I am new to this, but here it goes...I am 32 years old and I just had a pituitary tumor removed 3 weeks ago. I have been trying to find out how people felt after the surgery. I of course have headaches, and dizziness. But it actually feels like my head is clearer...before my surgery I couldnt seem to form a thought, I was so weak. I still have weakness but not as bad. My eyes used to hurt, and very hard to focus. I didnt have the best experience after the surgery, they didnt even give me discharge instructions. During my follow up with the O.R. nurse she finally told me that I cant sniff, blow my nose, try not to sneeze and dont hold my head down. She said for at least 2 to 3 months!! Is that for real???? I am on hydrocortisone 3 times a day, and before the surgery i was diagnosed with hypersomnia, because i couldnt seem to stay awake. I would wake up, and about 1 to 2 hours later I will fall asleep. I had to stop driving because i would fall asleep. I am more alert now, but how long will it take to start feeling normal again??? Will I ever feel normal again???
I find that a bit strange. My post op instructions were not to blow my nose, sneeze (keep your mouth open), use a straw, sleep flat (if you did not use packing, this is normal), bend over, or pick up anything heavier than 5 lbs for 3-4 weeks, not months.
If you were not given discharge instructions, you can call the surgeon's office immediately. If you cannot get them, then I would report the hospital and doctor to the state medical board.
Your HC dosing is also, IMHO, wrong, as it does not follow what a normal body does - and normally one would take the bulk in the morning, and then lesser in the afternoon, and none at night so one can sleep. I would not drive while on pain pills.
You will feel normal again, but you are healing from a major surgery so take it easy.
My discharge instructions were the same as rumpled. I too take hycortizone. Initially 20mg twice a day and kept reducing. Now I take 5 mg twice a day morning and evening. During times I am not well for whatever reason I have to triple the dose for 3 days then return to the regular cycle. I get the 20mg tablets anyway and break them into quarters because the 5mg don't work for me so my guess is that since I can't break them perfectly I probably get a little more than 5mg in some pieces and less in others. I take the larger piece in the morning and the smaller piece at night. As time goes on you will fine tune your system and know what exactly you need. Some days when I feel really fatigued I take a little more but never less.
I was struggling until I figured out what works best for me. Normally I was always very active but would find myself in bed all of Saturday after a 5 day work week with absolutely NO energy before 2-3pm. Now I am ready to get up at 7 am which is my normal time. I have been doing some reading and the more in tuned you are with your body the easier it will be for you to adjust your meds for a fulfilling lifestyle. My Endo asks me what my doses are and verifys it's working with blood tests.
My head was cloudy before and vision poor. I thought thw vision was age (49) and I just needed reading glasses but after the surgery I could not see with them. I took my contacts out and realized my vision was better up close so I now wear 1 contact for distance. I think my employees liked it better when my head was couldy because I am back and much sharper mentally. Good luck.
Did anyone else experience hoarseness? I was hoarse for 4 months prior to the surgery and told it wasn't likely going to be the reason. I had 2 surgeries in 4 days. The first left my voice worse but after the 2nd my family noticed in the recovery room it was normal.
Thanks for the advice. I was hoarse before my surgery and after it seems to have gotten better but not normal. I am so happy that I am more mentally clear now. I just have to learn how to go to bed at night, and get sufficient sleep. I am taking 30 mg of hydrocortisone, i take 5 mg at 10 pm. I feel like I am tuned in to my body, but sometimes its hard to read, because I have SLE Lupus, Fibro, and Chronic Anemia. Oh and Secondary Adrenal Insufficiency. I am just going to try and be patient.
Has anyone had the experience of the pituitary tumor and sec. adrenal insufficiency?
Did your Adrenals ever begin to function, or function normally?
RE hydrocortisone (H/C): Many of us to regain the ability to make it or partially make it, after surgery. So your doctor should be checking your levels regularly. Also you can help by paying attention to how the H/C makes you feel to help your doc to work with you to work out the best dosing/timing for you.
30 mg seems a little high for replacement. But then, if it is being used therapeutically for the Lupus that's another story. But, taking it at 10pm will affect your sleep if you keep a more normal schedule. I would def bring this up with your doctor, if you are having trouble sleeping.
After my surgery I came down with secondary adrenal insufficiency. I took 25mg spread out over the day with the last dose at 4pm. Now several years later, I'm taking 15mg, spread throughout the day. I also have the freedom to take an additional 2.5-5mg, if I will be having a super busy/stressful day.
But, I never take it after 4pm, unless I know that I will be need to be up really late for some reason.
For many of us Pituitary patients our adrenals work fine. The problem is that our pituitary glands don't not make ACTH (or don't make enough). It is the ACTH that tells the adrenal glands to make cortisol. In this whole time I've had two adrenal crises. This was because I had a flu and could not take the H/c orally. Because I live almost an hour away from the hospital I keep a dexamethasone injection kit on hand. Thankfully I've only needed to use it one time.
Here is my 13 year old son's experience, for comparison. He just had his pituitary surgery 3 weeks ago also. His tumor was mostly a cyst, that was squashing his pituitary, and it had reached the point he had very little hormone function - no growth hormone (the first to go), almost no reproductive hormones, almost zero thyroid stimulating hormone, and severe secondary adrenal insufficiency. He was put on hydrocortisone (only 12.5 mg daily, in two doses) and thyroxine (50 mcg once daily) two years before this surgery.
He got extremely ill after starting hormone replacement. It took months for his body to adjust to these meds. He was not given any other treatment and no changes were made to his doses, in spite of the illness. I "worked" with it and found he did better on 25 mcg thyroxine, and 15 - 20 mg hydrocortisone daily.
His vision changed when symptoms first began, three years before diagnosis. He suddenly had extreme light sensitivity and myopia. But he did not have peripheral vision loss as doctors said to watch for. They kept emphasizing this after diagnosis, because the cyst was just touching his optic nerves, they were concerned he would lose vision from upward growth of the cyst. They told me light sensitivity was not a symptom (but it was).
Meanwhile, they said nothing about the actual condition of his gland. Our second-opinion surgeon told us what was happening - the cyst was slowly expanding downward, flattening the pituitary, not endangering his optic nerves. ( It grew 4 mm in two years). So the whole time I was monitoring his eyesight for changes, to signal growth of the cyst, the darn thing was further damaging his pituitary gland, causing more, and possibly permanent hormone insufficiency.
Post-surgery, he is recovering well. You were lucky, syfy, to escape the hospital without contracting an infection. What antibiotic were you given for surgery? My son contracted C.Diff as a result of the cephalosporin antibiotic he was given during and just after surgery. He was so sick! He had to deal with this intestinal monster as well as the usual endonasal transphenoidal recovery bleh, congestion, nose bleed, dizziness. He didn't get a headache bad enough to take anything for it, amazingly.
He was switched to dexamethasone for surgery and is being kept on this at a low dose, 0.25 mg daily, instead of hydrocortisone. Different doctor, different treatment. They are hopeful he will regain ACTH function eventually.
He has other problems though. He developed severe orthostatic intolerance 10 months prior to surgery, and he still has it. It wasn't treated, all docs suspecting the tumor as the cause. He had orthostatic vitals done in hospital, and just missed the standard for a diagnosis of orthostatic hypotension, so for now they just say do physical therapy, see if it helps. HA! Tell that to somebody with severe POTS and see what they say. His tachycardia is scary, but he has a lot of health problems, I think are associated with loss of growth hormone and intestinal malabsorption issues.
His nutritionist had him do a test 5 months ago that included ANA - it was 1280. (His level was 320 two years ago). He may have an autoimmune disease developing - this needs to be rechecked asap, in my opinion.
He's always been sharp mentally and cognitively. No changes there.
Sleep - lots of trouble with sleep. I think he's always had high nighttime cortisol, even as a tiny child (maybe an early warning symptom? Also wet the bed until he was six, but I think this was from soy allergy - that's another sad story, for another time.)
When adrenal insufficiency began, of course he couldn't get up for school in the morning, but was okay late afternoon, and always up late - couldn't fall asleep. This got worse and worse, and I began homeschooling him after diagnosis, to help him deal with the fatigue and stress. (School personnel didn't understand the severity of the problem and were being difficult, kept pushing him to do his best etc. which he always did anyway, quite the perfectionist).
Anyway, he began sleeping in mornings, taking hydrocortisone even in late evening to help with nausea, stayed up later and later on the computer at night and - voila! - a completely reversed sleep cycle. Look up Delayed Sleep Phase Syndrome. Four months ago he began going to bed at 5 or 6 in the morning, and getting up at 2 or 3 in the afternoon, if allowed to sleep as long as he could. A few weeks before surgery he sometimes went 24 to 36 hours without sleeping, and last night he set a new record - 41 hours without sleep. He doesn't like this though, and says he wants to get on a regular schedule. The doctors seem to think it shouldn't be so difficult to change, but it's very difficult. At least, when he DOES sleep, he sleeps soundly for 8 or 9 hours, and wakens feeling rested.
He does have trouble trying to fall asleep and this is a big part of the problem. He trembles, and has something like adrenalin rushes that jerk him awake many times, just as he's falling asleep, and he has something like central sleep apnea at the time ; he stops inhaling for 5 to 10 seconds just before the rushes. His brain evidently isn't getting enough oxygen and it takes 20 minutes to an hour for things to sort out and let him fall asleep.
But he had many tests in the hospital after surgery and nothing very significant was found. He did sleep normally, 10 pm to 7am for a few days home from surgery,(he was so exhausted!) no rushes, so although it's bad again now, I am hopeful we can change this soon.
Actually, he does have some psychological problems now from all of this, which I understand is common with pituitary disease. He has "premonitions" that scare him and won't sleep in his own bed anymore, because he had a vision of himself lying dead in his bed. He sleeps in the living room on the daybed now. In fact, the orthostatic intolerance began the day his guinea pig died, in his bedroom. The shock was too much for him. Hmmm... I will have to look into this further, but finding a good psychologist, well, that can be difficult.
So there you have it - different, yet similar. Oh, my son's tumor was diagnosed as a 2 cm cystic craniopharyngioma, not a pituitary adenoma.
SYFY - what size and type of tumor did you have?
I the tumor was found in january of 09 and they said that it was about 5mm and so I was first put on Bromocriptine then changed Endo. and put on cabergoline 2x's a week. Well 6 months later when they found that the tumor had grown to 10mm, my neuro surgeon said we dont want to let it keep growning at this rate and not do anything. so middle of october i had the transphenoidal surgery and he said it was benign. When i went to the office yesterday they still werent able to tell me if it was a secreting tumor or non secreting tumor. So the nurse is going to get that info and call be back with it. I had also just received some labs back from my Endo and it had shown that my prolactin levels have gone back up. So i am going to have another MRI next month and repeat labs next month. I am not freaking out but do want to express concern that the prolactin levels have gone back up. Hopefully not one cell was left. I had an absolutely excellent surgeon, but as we all know the human body is tricky. I do experience alot of sleep issues and if the dose of hydrocortisone that i take at 10 pm is contributing to that then i want to stop taking it.
Has your son or anyone else experienced weight problems with the hydro.corti?
I am sick of this weight...uggggh
Your thyroid may also be off - has that been tested? Once you have pit surgery, well, the pit can get a bit, well, upset that it has been wacked and stop working for a bit so you have to watch hormones forever and ever.
Thyroid can also raise prolactin - I think you need more testing.
Usually if vision is directly impaired by the tumor, it is cutting off the vision on the sides.
However, many of us will tell you that after surgery that we find our vision to be clearer and have less headaches. The surgeons may find it anecdotal - and I don't know if it has been studied. I certainly saw better after surgery and was told to wait to change prescriptions for 6 months.
I had Pituitary Tumor Surgery in June 2003 at Tampa General Hospital Well I was very tired for the first 3 years now I have a little more energy But I have been having trouble sleeping at night. I cant seem to get on a regular schedule. I don't know if others have had this problem I did go to the VA But I was told I do nt have sleep apnea. So its not that.I was divorced soon after the surgery my ex wife did not like me not being able to work. I did care for her dad that had altimeters for 3 years. After he was put in a nursing hime I was told I was not needed there any more After being married for 12 years I found out she had been cheating for the last 5 years of my Marriage. I am relived to be pout of that abusive situation Oh I forgot I was verbally abused and Mentally abused as well after my Surgery I was made to feel I was not worth anything. So it has taken me 5 years of counseling at the VA to get back some self esteem. I have not dated much and I don't have any friends here in Gainesville,Fl. So for me it was a down-heal ride to the bottom I was also homeless after going to my parents for help. I was put in jail for arguing with my Dad I had made up with my dad and had a good relationship after that happened in 2005. I came back to Florida in Jan 2006 Thank God The VA was here to help me get my SSDI I had a great Case Manager who drove me to Atlanta,GA for the hearing. I am still unable to work now. I dont have a socal life but I am, talking to 2 women online one who is also disabled and does understand where I am now.
I am also disabled after my pituitary and adrenal surgery. I am on SSDI too. But it sounds like you have been through the wringer!
How much hormone replacement are you on, and are you still being monitored for your hormones? Have you had any follow up MRIs? Did the surgeon deviate your septum - therefore you are having breathing issues? That can happen.
I am 36 years old male and here goes my story pertaining to the pituitary gland:
In Mar/2010 I noticed that my left eye sight didn't seem as good as the right one. The difference was really negligible so I thought I only needed new contact lenses. The optometrist changed my contacts lenses as she always does, but for the first time in 23 years I wasn’t really satisfied with the results. She booked an appointment for a vision field test. The results showed a big loss on my left peripheral vision and a small one on the right. She told me I needed an MRI because my eyes were not the problem. I had an international trip that night, so I decided to go anyway and follow up the problem from there. The MRI and the neurologist confirmed her suspicion: I had a macroadenoma on the pituitary gland. I had no other symptoms apart from the eye sight and apparently my tumor was non functional. To be honest, I exercised from 3 to 6 times a week and I felt like I was 20 years old.
The surgery went fine in November, but from the beginning I was urinating 500ml every hour. I was put on ADH which really worked wonders. Apparently the rest of my blood tests were OK. I got painkillers and antibiotics in the hospital. I was told not to blow my nose, lift heavy stuff, bend over, cough or sneeze with my mouth closed.
When I got home after a 2 hours trip, I felt like my house was at -10oC. I couldn’t get myself warm. After 15 minutes like that and with my hands getting num and purple I called 911. I kind of freaked out because I thought it could be a cloth, stroke or any of these nasty things. The guys from EMS looked at me like “really?”. After I explained the situation to them and anecdotally started shivering they took me in just in case. They didn’t find anything serious so they released me. I personally think I have developed some sort of circulatory issue after the surgery.
The ENT surgeon checked my nose two weeks after the surgery and told me everything was fine. The dripping from my nose continued for two weeks. I really freaked me out trying to tell “regular” drippings from CSF leaks.I am still waiting for my endocrinologist appointment (4 weeks after surgery) and to return to the neurosurgeon (8 weeks after surgery). Quite frankly, I thought I was going to be followed up a lot closer than I was.
Three weeks after the surgery here goes my status:
- I am sleeping well on my side. I am not sure I should be doing it though.
- I feel usually tired during the day
- I am very very sleepy at 11:00AM no matter how well I have slept the night before. I got back to work, but it is really hard to work like that.
- I have almost no headaches (except if look down for too long)
- Until a few days ago I had pains that would move from one part of my body to another. I am not sure whether this is from a throat infection though.
- My heart rate was historically around 65. Now it is inexplicably around 95. I have no idea if this is due to the surgery itself or due to a messed up hormone.
- I have low appetite. I used to eat like crazy before the surgery. Strangely enough, I am not happy with this :-)
- If I stand up too quickly, I may feel dizzy. As I mentioned before, I think this is a symptom of a circulatory issue. Hopefully something transient.
- I never had trouble with cold, but now I am constantly feeling very cold. Circulatory issues anyone? :-)
To sum up: I felt like I was 20 years old and now I feel like I am 70 years old. I am still thankful though and I am hoping that my new issues will go away after a few weeks. If not, I hope that some hormone replacement therapy will do the trick.
You may or may not have suffered pituitary apoplexy - did they do a follow up MRI? If not, get to a pituitary center and get a neuro-endo to get some follow up. You should have gotten, yes, a full battery of testing, imaging and more hormones - if not surgery. You need a pituitary center - not an ENT - a pituitary doctor, pituitary surgeon - all pituitary people and then you can get the treatment you need.
You do have a CSF leak - which is nasty enough. But something changed up there and they have not addressed it. BTW, a macroadenoma requires immediate surgery. Someone dropped the ball.
Sounds like a leak to me. It can be patched through the sinuses. This is dangerous as it is an opening into your spinal fluid for meningitis!!! consider it an emregency particulary if you have actual fluid coming out of your nose.
I got a CAT scan the day after the surgery. The neurosurgeons told me that the results were fine. On the hormone side, I got tested very often in the hospital (right after the surgery), but they only addressed the antidiuretic hormone. I was happy to look at the other hormones later, but I thought it would be one week later, not four weeks. You know what, this conversation inspired me to call there and ask for an earlier appointment.
When it comes to leaks, I failed to mention that I had a leak during the surgery and they patched it with a fat graft. Since my surgery was an endoscopic transphenoidal one, I had quite a bit of "OK" dripping (blood and mucus from my nose). It was hard though trying to tell the OK dripping apart from a possible CSF leak. Until now I am scared with the possibility of having a micro leak that does not reveal itself but will get me meningitis.In a week I think I will leave my head hanging low for 5 minutes and see if something drips... I don't want to do it now though as it is still a bit early.
When it comes to the delays, by late August I had an MRI that showed the macroadenoma, but I went through a bunch more tests and DRs before getting the surgery scheduled to November.
Sorry, I wasn't very clear about the CSF leak in my first post: I did get a leak during the surgery and it was patched. All or almost all of the drippings that I got after the surgery were from my nose (blood and mucus mostly), but sometimes it was kind of clear enough to get me thinking if that particular one was a leak from the graft. I didn't get any drippings in a while now, so I am planning to run a test in a week by tilting my head forward for at least five minutes and watching for any dripping. If I get anything clear I will go straight to the ER.
Right now I am only on ADH. The endocrinologist at the hospital checked my blood many times, so I am assuming that the other ones were not too bad. In the other hand, if the other hormones are fine how come I am experiencing all these changes with my body?
Do you feel better if you lay flat or drink a lot of caffeine? Those are stop-gap ways to help leaks (as in you can do them at home).
I had crud coming out of my nose for some time - if it smells horrid, it may be infection. If metallic, that is CSF. Another way to test CSF is to use a glucometer as CSF has sugar, and snot does not.
Usually one gets more follow up post op pit - and has replacements for hydrocortisone (cortisol) and thyroid - which may account for why you feel old.Growth hormone is usually the first hormone to go but that is usually a more subtle downturn in most people. Do you have copies of your testing? If not, get a copy. In range is one thing - but where you should be is another.
it seems that I didn't have a leak after all, or if I had one it was a transient one during the healing process. Thanks for the information though. I am not the type to freak out easily, but the notion of having the juice around your brain leaking through your nose was a bit too much for me to stomach.
I will keep on taking my hormone replacements and hope that from now on things will only get better.
For sure, pituitary surgery is not exactly lots of fun :-)
My blood work revealed that I am on the low side of a few hormones. For now the Dr. put me on a low dose of a few of them (e.g. Prednisone 5mg). In a few months I am going to go through what I think is another cortisol stimulation test and then we are going to go from there. Hopefully I will no longer need some or all of the hormones that I am taking now.
my son had a pituitary surgery in june he cannot control his moods and at time he hits myself and the rest of our family and now he is in prison he says one thing one minute and something different the next is there any connection to his unbalanced behaviour and his condition
What kind of tumor did he have? Did he have adequate replacements after surgery and was he compliant in taking his meds after surgery? After surgery, the pituitary is not as functional and can effect his mood greatly. It could also cause him great pain. If he had poor doctor care, they may not have understood the emotional and physical aspects of the pituitary. There can be a connection but not knowing the tumor, the surgery, the meds - it is hard to say for sure, yes.
Yes you should test your thyroid and my tsh levels were always normal but then they did diff thyroid tests like t4free and they finally discovered my thyroid problems. I'm 23 yr old that has suffered through the headaches and sleep and fatigue issues for years and they just kept telling me I had depression. I demanded an MRI which they didn't wanted to give to ms cuz " it would just come out normal" and found a large pituitary mass against my optic nerve just had the surgery last week and it ended up being a cyst. I really hope my hormones come back because none of mine are working now. Also the surgery triggered my urine output to increase called diabetes insipidus. I hope this recovery is fast because it's tough on me! And I really hope yo have children soon.
I have diabetes insipidus too. It is a weirdest condition known to man I think! Make sure that your doctors are checking your thyroid, cortisol, growth hormone and sex hormones regularly. It takes a while to get them all balanced if you are off. But it is well worth it as you will feel so much better. You won't really know what you've lost permanently for at least six months. If your DI clears up that will be a good sign that you are regaining hormones.
Good for you for pushing for that MRI!
Rest and take care
Found your info very helpful. Live in UK had surgery on dec 15th 2010. Struggling now. Regularly feeling very lightheaded, as if I will pass out.
Feel weird about an hour after taking hydrocortisone. Had issues with balance and falling prior to surgery.
Take 5 mg hydrocortisone at 8am and again at noon.
It is 1.30 am here and probs sleeping again.
Also feeling sorry for myself which is ridiculous when so many are far worse off than me.
Had a large microadenoma apparently for over 20 years.
What is your blood pressure? What kind of tumor was it - was it secreting or non-functioning?
Your cortisol replacement is too low really to replace unless you have had testing - and are you on thyroid or other hormones too?
Don't feel ridiculous - your hormones are off. It makes you feel off.
Do you crave salt? Are you thirsty?
I've just had a small tumour removed on my pituitary gland 2 weeks ago and like most of you I have simlar symptoms of feeling exhausted and dizzy, I'm even a little firghtened of walking to the local shop as I sometimes feel the need to want to pass out!
I understand some of this is a normal part of recovery but what really frightens me is that I'm slightly dehadrated, not on a dangerous level but I'm craving fluids and sugar product big time, I'm going to the toilets lots even through the night, my blood tests are apparently normal (no diabities indicated, hormones ok etc...). I also get spells where I feel like I may black out! when this happens I get headaches and my right pupil is a little bigger then the left, I cannot get up I need to lay down. The Nero team thought it could be because of swelling....but 2 weeks later!.
I do still have a slight leak from my nose but it's not enough for me to be concerned.
Does anyone think I should worry?.
I still have my P. gland.
I'm taking 20 mg of Hydrocortisone.
I may of been over doing things slightly.
It probably would have been helpful to start your own thread...
It does sound like you are overdoing it - you don't look like you have had major surgery since you don't have visible stitches or a cast but you HAD MAJOR SURGERY. In so, you need to take it easy for a month or so.
At two weeks, you should not have any leak - please contact your doctor to make sure it is sinus. You don't really want a sinus infection at this point because you are still healing - take it easy!
You could be borderline DI - that is diabetes insipides - it happens after pit surgery that the pituitary is very unhappy about being wacked and so it acts up for a while and you hope that does not become long term. Your doc needs to keep an eye on your fluids and your sodium as there is a condition called SIADH that can be super nasty and even life threatening so please, keep on testing and if you feel wonky go to the doc or emergency room.
I am not happy about the pupil thing, the black outs etc - do you get copies of your tests and what are they testing? Are you at a pituitary center? Can you get another opinion?
There is an expert forum here too where you can ask a doc questions - I am just a person who had the same surgery and knows others who had it.
Thanks for your feed back rumpled,
already over the last few days I've felt a little better I think I have been over doing it so I'm now trying to rest up a little more.
Your right about the diabeties insipides I spoke to a Nero doc he's said I have all the right symptoms for this and it's likley I have it I now have to see my own GP to get some nasal spray to hopfully keep control of this problem I was told this could just be temperory so fingers crossed on that.
Apparently my sodium levels are ok :), He seems to think the pupil thing is not related to the surgery in any way but after reaserching on the internet apparently your pupils can mess up when dehadrated so it maybe due to that, either way I'm making sure I keep a close eye on my health and in the mean time trying to gather as much info as possible to keep my mind at rest.
I have no idea what the docs are testing me for so I think I may have to find that out soon!! I know it's not normal to want to black out and since I wrote this luckly I've not felt that way, but if I do I think I may just go straight back to the hospital.
At the moment bed rest seems to be working so my advice to most people out their pls try not to run your life like your in perfect health like me it may come with frighteneing consequences!! Thanks again I'll keep you posted if things get worse.
I've also been taking an extra 5mg of my Hydrocortisone not instructed by the doc, but I've found it seems to be working better for my recovery a little more energy I have now then before, so knowing yaself and what works for you is good advice.
Not happy that they are saying DI without doing any testing... BTW there are nasal sprays and pills - some people use a combo of both to keep yourself regulated. But an endo or someone needs to do something to monitor you so you get off the medication when you don't need it anymore.
Get copies of all your testing! Keep an eye on it - that way errors are kept to a minimum.
Sorry you are having problems. My surgery was in oct 2005. It took me approx 8 weeks to fully recover. Have you had your potassium and sodium checked. This can be common to get these levels after this surgery. Mine went complete opposites of what normally happens with this surgery and had to be constantly monotired for a while.
I did have all the terrible gross aftersurgery nasal byproducts for quite sometime. Good Luck!!
I had my surgery in Jan 2006. I had diabetes insipidus too. With me, the DI was awful. I was so thirsty!!! I would drink from a toilet bowl if had to! Also, because of the mass fluid intake,I peed every 30 minutes. This is annoying in the day...but AWFUL at night when you want to sleep. I was up every 30 minutes wanting to drink, drink, drink, pee pee pee.
Be very very very careful and drink as much as you can when you are not medicated. It is so easy to get dehydrated and really have problems because of that.
It is good to record all of your fluid intake and output, so that the doctor will have an idea about "your DI". I did this, while we found the right method and dose of DDAVP for me.
I found the nasal spray to be much too strong for me. When I took it, I did not pee for over two days and gained 6 pounds of water weight. I called my endo, when this happened and we dealt with it right away. I was told to go to the ER. First they checked my electrolytes and I was was instructed not to drink, until I was peeing again. So once the DDAVP was out of my system we went really slow. So I ended up doing better on the Desmopressin (DDAVP) pills. I did well on 0.1 mg (the smallest dose) pill twice a day. I also weighed myself every day. If I was holding onto too much water, I cut back on my intake or skipped the DDAVP every once and a while. When on the meds it is very easy to become overhydrated.
Eventually you find a rhythm that works and it becomes a background issue.
I now I take only 1/2 of a 0.1 mg pill before I go to bed and don't take in during the day.
Just to update you that I went to my GP & once again you was right, I tryed to gert some nasal spary and she wouldn't perscribe me any without the Nero's advice so I went back to the hospital and they did some more blood tests and a urine test after dehadrating me for 3 hours, but apparently their now saying I do not have DI everything is showing up normal (what ever it is their testin me for as I still keep forgetting to ask).
The Nurse I seen was very sympathetic and answered alot of questions for me she did say I had all symptoms for DI & it can be hard to detect espechially when your drinking plently as it dilutes your urine, but at the min they still can't detected this in me dispite not drinking for 3 hours.
She did detect while talking to me that I have oral trush (not something I wanted to admitt to) but apparently this is quiet a normal thing to get after surgery, when your body is very run down etc...so this could be part of the reason I'm drinking and dehadrating so I now have some medication for this and was told that if my symptoms didn't improve after this problem has cleared up then I'll have to go back on the ward over night to a full urine measure, but their is a waiting list so I'll be waiting approx 6 weeks for this to happen.
I'll keep you updated should my symptoms improve before this. x
Good for your GP! I think it is not great to be fobbed off when he is not qualified and probably has never even heard of DI. The dehydration test is common - that is how you test for DI. You may be borderline or just recovering from surgery.
I hope you get the thrush cleared up - it does happen and yes, you are run down. Do take care to rest and take care of your self.
Hello, I’m Wesley and I am 27 years old. Recently I had my functioning macro adenoma tumour removed over three weeks ago. Thinking back to all the issues I’ve been having before being diagnosed by my neurosurgeon, I could literally highlight everything on a checklist for having a pituitary gland tumour.
It all started with really bad, sharp, quick headaches about 3 years ago now in January 2008. At the time my family doctor dismissed such complaints as stress, as I was in school on my placement at the time. My headaches or migraines were arresting as I had to stop what I was doing and literally cradle my head. This would happen in a wave and leave after a quick 30 seconds, and would happen about 7-9 times a work week. What would set them off would be quick fast movements, as in getting up from my desk too quickly etc.
At the time he told me to start “meditating”. He gave me a CT scan later when I demanded someone look into my head, and the CT scan at the time had showed nothing. However, my Neurosurgeon said a CT scan wouldn’t have showed anything anyways, and if my doctor was serious an MRI would have seen something.
At the same time, I got hired for a government job in the fall of 2008 and had to move out west. This occurred at the same time I began drinking excessive amounts of water and urinating constantly. Again, my family doctor didn’t even check me for diabetes until my parents (who have a history of diabetes, which he knows) told my doctor to check me for it. The tests came back positive for diabetes and I was immediately placed on Metformin. My blood pressure was also becoming out of control with 158/90 levels and I was placed on Linsinopril for my Hypertension. My sugar levels were high ranging from 9 – 11 and I later transitioned to a full blown diabetic on Insulin 5 shots a day of Insulin N and Insulin R. Mind you, I was a bit overweight, however nothing to precipitate such a dramatic turn in health over such a quick period of time.
I completed each day a 45 min treadmill run. I kept my sodium levels to less than 1300 mg a day. I also have had for three years excessive sweating issues. Coming out of a shower I’d have to literally lie on a bed in front of a fan for 25 minutes before I could put on dry clothing!
Fast forward to Mar 01 2011, my life changed! This is not an exaggeration!
The first day of my 2 ½ year career as a social worker where I dropped my caseload and left work sick! Here I was having more and more successive sharp, quick migraines like I explained at the start of this post; however they were multiplying and leaving a sort of headache “aura” in my head that I couldn’t shake. I also was getting a prominent stabbing pain in my right eye. Just had my glasses done and eyes checked two months prior with no issues.
At home, I lie on my bed with hands over my eyes, any noise, light caused great pain. Drove myself to the ER and doctor on call misdiagnosed me initially as having Trigeminal Neuralgia, a facial nerve disorder. I was prescribed with the anticonvulsant Carbamazepine. I think most of all I was initially relieved to have this pain for years I’ve been dealing with “diagnosed”. As soon as I took the medication the pain had gone away, for one day.
The next day on Saturday, the headaches were back and this time with a vengeance! At this point I was duelling between wanting to pass out or to continue to vomit in the toilet from my headaches.
That Saturday evening I again drove myself to the ER feeling like I was about to have an aneurism, the pain was incredible. Told the doctors of my history.
They began to place me on pain medications for my headache. By the sixth pain medication they placed me on hydromorophone (10 times more powerful than regular morophone). This only seemed to dull the pain to acceptable levels for me to sleep. As they gave me this, my right eye in front of the Neurosurgeon began to droop right in front of him!
Long story, they sent me to an MRI at 2 AM and confirmed that I had a tumour on my pituitary gland. Two days later I was transferred to the Neurological unit at Winnipeg Health Sciences and had transsphenoidal removal of the tumour and full pituitary gland.
My neurosurgeon could not get all of the tumour as it had spread into the cavity behind my right eye. Three weeks later I am awaiting on the pathology results still of everything to determine with a radiation oncologist on how to proceed treating with Gamma Scalpel or drugs to get at the remaining tumour behind my right eye. I still experience headaches about once a day above and in my right eye where the remainder of the tumour is still located.
4 days in the hospital I no longer needed my 5 Insulin Injections, my blood sugars stabilized to ranges of 4.5- 5 and ranged to 7 after meals. This has remained three weeks after surgerory I have not needed insulin. My Endocrinologist now believes I am cured of my diabetes I’ve had for over three years. I no longer have hypertension. My levels have ranged 133/88.
The battery of post tests my Endo believes I am experiencing diabetes mellitus; I am constantly urinating and drinking fluids. At Health Sciences they stated I had zero testosterone in my body for a 27 year old. This has been true with my lack for sexual appetite, constant fatigue.
I am exhausted to the inner depths of my body and I need to nap like I am 70 years old in the afternoons. I consistently feel chilled. I am on 25 mg of Cortisone a day 1 full pill in the morning and half in the afternoon, but it gives me hardly any energy. My appetite has dropped, as has my weight. I’ve dropped 30 lbs in over three weeks alone!
Here is the kicker! My Neurosurgeon suspected, and my Endocrinologist confirmed by grabbing my hand after the first two minutes of our initial appointment that I am a “textbook classic case” of having Acromegaly. A condition where my pituitary tumour was secreting high levels of growth hormone past my puberty stage, only affecting my fatty tissue growth around my hands and feet. Not the classic gigantism, but a rare form of it.
Everything has fit together like a puzzle! All my sudden downward spiral into bad health within two years. I feel liberated that I almost have a second chance at life with the reversal of my diabetes, excessive sweating, headaches, high blood pressure etc…
Alas, an MRI would have shown the lesion before it had grown into the optic chasm perhaps...
Are they going to put you on somatostatin to get the rest of the tumor under control?
Once your growth plates are sealed, acromegaly can causes a different set of symptoms - like what you had.
You may need other replacements like thyroid - so keep an eye on your tests. I am panhypopit - cushing's.
Somasostatin? I am four weeks into this, so I don't know all of the terminology or pharms. It sounds familiar... My Edno has a list of about 5 new meds he wants to prescribe me, however he is waiting for my results from 9 vials of blood and a urine test. I follow up with him tommorow. I will keep you informed as to his actions.
At the same time, my pathology report should be coming in and will be forwarded to a neurosurgeon and radiation oncologist in the area that I will be dealing with. Apparently they will be the ones to determine if its drug therapy or targeted radiation.
Am I to assume that drug therapy is for more mild tumours left behind? Because the remainder behind my right eye is causing some re-occuring headaches over my right eye forehead and inside my right eye. Something I want them to know before they start discussing follow up treatment.
Somastatin specifically targets acromegaly...in fact, had you been tested well before surgery, you might/may have/could have avoided it with the shots has now the new protocol treatment is the shots and not surgery. I know with your eye involvement they jumped at surgery. Acro now has a medical treatment which is nice and that can shrink the remaining tumor however the medication is expensive and that may not go under your plan and you must remain on it the rest of your life to keep the tumor in check.
Read up on radiation for the pituitary - it takes a while to work from 6 month to 5 years. It can also have a bunch of side effects. They are not going to tell you that. I would push for the medication as you may have less side effects once it takes down the size of the rest of the tumor and you won't lose any good brain tissue.
Thank you. I had my follow up appointment with my Endocrinologist today. He stated that he may have been incorrect in his jump to diagnose me with Macromagly. He had a look at my CT scan I had three years ago (the one that didnt show up my Pit Tumour), and he said that the CT Specialist and him felt that my bone growth was "negligible" and that he no longer feels I may have Macromagly.
I had previously stated to him and to my Neurosurgeon who had originally brought up the Macromagly, that I've always had big hands and big feet and that this was nothing uncommon in my family. They felt otherwise at the time.
Meanwhile, to confirm we are still waiting on my results of the growth horomone in my body. Apparently that test came back "screwed up", and I have a req to redo it. My Edno was amazed to state (he is also a bad diabetic at 60 years), that I am now "cured" of Diabetes with my numbers. He stated that my Diabetes Melitus is slowly going away, and it is nothing of concern. This is consistent with my thirst going down, however I still have to urinate quite frequently. I can wait however.
My Testosterone levels in the hospital were a zero! However, that takes another week for that treatment to come in from the labs. For a new hospital their quite slow.
My Thyroid was 5/10 and he has placed me on Thyroxin 0.75 MG. I asked if this is the cause of my extreme fatigue a sluggish thyroid and he said it is possible, as well as my testosterone levels (once they come back) we will know better.
As for me asking to increase my Cortisone from 25 MG he said that would be dangerous, If I didn't want to have arthritis at age 45 he would rather not want to increase it. I found that quite a warning, as I have read other posters on here adjusting their Cortisone levels by themselves regulating on 'how they feel'. That might not be such a good idea for them!
When I first read your post, I confess I thought you had what I had - which was Cushing's. A lot of the symptoms overlap for many of the tumors.
Cortisol suppresses testosterone - as well if your pituitary was wacked during surgery, it sometimes takes a while for it to get over being manipulated and start producing hormones again. So your LH and FSH may be low.
I have no thyroid so I take 175 and 15mg cytomel - a lot more than you take. You may need a lot more.
If you want to read about people playing with their doses - head over to the adrenal insufficiency community! I have not heard of arthritis (cortisone treats arthritis!) but osteoporosis and steroid myopathy yes.
my symptoms were not nearly as bad as yours (mostly partial loss of peripheral vision), but I did feel terrible for a month after the surgery. I was extremely cold, tired, light headed, sleepy and without any energy. Once I got the right hormone replacements, things got way better. I still feel a bit sleepier and colder than I used to be, but I am alright with that. I want to keep the replacements to a minimum! The testosterone replacement works wonders, but the one that I was prescribed is not particularly cheap.
Hi everyone, this is my first time here - I found out in January I have a 9mm pit tumor & have since been on Cabergoline & Bromo - both of which give me nasty headaches. Has anyone had the feeling of something in their throat - I saw a couple had the hoarse voice - I seem to clear my throat a lot & have an appt with an ent and it may be a totally different issue but was wondering if anyone had an opinion.
Also, in regards to surgery, this may sound silly but after the surgery I understand there is no blowing your nose etc for a time after so I guess you become a mouth breather - when I first read that it freaked me out a bit because I have had issues with swalling for years & had the balloon procedure done a few times so the thought of only breathing through my mouth kind of sent me into a panic - any thoughts anyone can share would be greatly appreciated. I am hoping I will not end up having surgery but fear since the meds give me migraine'ish headaches & the dr wants to raise my dosage that is where I will end up. Thanks for any input.
They put you on both at the same time or tried one at time? I assume this means prolactinoma. The meds have side effects - they can recede over time but the hump can be be less than fun.
If you end up at surgery - ask a lot of questions. Some surgeons use packing and some do not. Some allow saline rinsing, and some do not. If you get a non-packing saline rinsing guy, you can breathe through your nose. Most suggest getting a vaporizor or humidifier which helps you breathe as well (keep it clean!). Some work with an ENT during surgery as well so the nose and sinuses are well protected but the docs don't want you to be uncomfortable. Always sneeze with the mouth open.
Welcome! And sometimes it helps to post a new post instead of at the end of an old thread that has a lot of mixed stuff... I wish they would close this stuff...
I'm 4.5 weeks post op from having a non functioning pituitary tumor removed. knew I had this tumor since 2009, kept an eye on it with regular MRI's, but since there was no growth my Dr. said we'll just leave it alone. About 8 -9 weeks ago i started having severe headaches. So severe i couldnt function, another MRI showed the tumor had grown ( had actually begun to hemorage inside itself), so we scheduled surgery. Surgery went well and i was without a headach afterwards, but only for roughly a week. The headaches are back with a fury now. had an MRI a few days ago that showed something risidual on pituitary gland. Waiting to hear from my surgeon today. Anyone else experienced severe headaches post op exactly like the ones they had pre op? losing my mind from these headaches, percocets dont help, even got 16 ml of morphine at emergency room, that didnt help a bit!
You had what is called pituitary apoplexy. Did anyone ever do testing to find out what type of tumor you have - as in lab testing?
Size is a factor with some tumors but with pituitary it is function so you have to have lots of lab testing - over time - to determine the type and even tiny tumors are removed or treated (some can be treated with medication) so sadly, it seems you did not have a proper neuro-endo or a proper surgeon that treats pituitary on a regular basis.
Headaches that bad may mean a CSF leak - GO SEE YOUR DOCTOR as headaches that severe are not supposed to happen. Do they lessen when you lay flat, or have caffeine?
thanks for the reply rumpled! i dont really see a change when i drink caffiene or when i lay down. i did have a csf leak during my surgery, which they patched with a fat graft from my side, but after a post op ct scan and mri dr. says he sees no sign of a leak. My most recent mri does show something residual,since my last post to you i have spoken with my surgeon, he says its nothing to worry about, but im not very comfortable with that, so im in the process of having all my records sent to University of Virginia's neuro -endocrine unit ( they specialize in pituitary disorders). These headaches are vicious. Im sure my surgeon is skilled but I feel im not being taken very serious with these headaches. not to mention upon release from the hospital after my surgery i mentioned how stopped up tight my nose was to my nurse, she checked my chart and said nothing was red flaged as far as nose blowing, so go for it. At the time i knew no better and started blowing my nose. Wish I had done some research on that before I had started the blowing. Worried i may have done some damage ( surgeon assures me i didnt). my surgery was on sept 27th, had bad headaches for 18 days prior to surgery, and have had them pretty much ever since. What gets me is I didnt have headaches for my 2 day stay at the hospital, until I started blowing my nose. Waiting for records to get to UVA then hopefully i'll get some answers!
Oh and as far as testing, all i had done were mri, ct scans and general blood work, i do see an endorinologist as my testosterone levels were found to be low due to the tumor ( levels are doing fine now). other than that, thats it. was told my tumor was nonsecreting, and was a macroadenoma.
my wife has since reminded me that my intitial post i wrote i was without headaches for roughly a week after surgery, which was wrong, was more like the 2 days after surgery that i was in the hospital. had to clear that up! lol thanks
So you did not have surgery with a neuro-endocrinologist present on your case - and it was not an experienced pituitary surgeon? That doc would have told you no sneezing, no blowing of the nose - NO STRAWS even - to not put any pressure on the surgery site.
Who knows, sadly, what an inexperienced surgeon removed or did not remove during surgery... it pays to have the best the first time so you avoid issues. UVA has a very experienced surgeon so hopefully they can review your file and get you back in to clean you up.
My surgeon is a neurosurgeon, he was assisted by an ent, he assured me he does this type of surgery a few times a month. I do see an endocrinologist but i have to admit, he wasnt involved with the surgery. The first I heard of no nose blowing , no straws , etc, was from the internet after I was home from surgery. That was pretty depressing on its own. I currently get a testosterone injection once every 2 weeks, which i was getting even before my surgery, otherwise im on nothing else. I went with this surgeon because hes highly recomended in my area, which now I realize means zip where a pituitary tumor is concearned. So much regret now, wish i had better informed myself. im at the level of pain right now that normaly a person would jump in the car and head to the ER, but the ER here would basically give you some pain meds and stare at you then send you home 5 hours later. Been there done that. Thanks for your replys on this, feel pretty alone on this whole thing.
Don't feel alone - you are NOT.
I have met many like you and know those in the aftermath - you can come out of it. Do run your records to several pituitary centers and try to get in ASAP. Now that you have an idea, make sure you get enough rest, the right meds, and make sure you are in a humid environment, open your mouth if you have to sneeze (so you don't), sleep with a wedge pillow or in a lazy boy to stay upright a bit... the pain can be scabbing (they also don't tell you that some really large scabs can drop out) and the nose blowing may have loosened up so you have a borderline leak?
Are you comfortable in any position?
You should probably be on other hormones - thyroid often is needed, and you should be getting checks on electrolytes too - sodium can go off. Cortef is often needed as cortisol can go wacky as well. You had low testosterone - that often means cortisol is elevated? What type of tumor did you have - did you get copy of pathology and surgical reports? You say non-secreting but... you sound like you had symptoms!
Recently had surgery at Stanford to remove a pituitary macroadenoma. Had my first surgery the 19th of Oct., and the second surgery on the 27th of Oct. During the first surgery a spinal leak needed to be patched and they put a lumbar drain in me. On the sixth night in the hospital they gave me a blood patch to see if this would eliminate my headaches. Amazingly the headache went away within 10 seconds. The spinal drain was then removed. The blood patch was done at 8:00pm that evening and I called my husband and told him I would probably be discharged the next day. Sorry to say.... they headache came back full force at 3:00am that morning. Later that day they were preparing me to have another blood patch done, but this time they did it in my room and had me lean over the bedside table on a pillow while sitting on the edge of the bed. As soon as my head was resting on my folded arms, my nose began to drip as that of an IV drip. The blood patch was then put on hold and surgery was scheduled for 8:00pm that evening to repatch the leak. The first patch was done with animal fat and the second surgery was patched with my own sinus tissue. After this surgery, they packed my sinuses and again put in a lumbar drain, After 3 days my sodium levels dropped due to the amount of fluid being drained. Was finally discharged on the 4th of Nov, even tho I was still experiencing headaches. Tomorrow will be 3 wks since my second surgery and the headaches have only improved slightly. Terrible tired and nose still feels tender, probably from tearing the sinus tissue to pull back and use as the patch. Don't feel as if I still have a leak or if another blood patch would work. The headaches were initially so bad when I came home that I was vomiting everything I ate. Have been on anti nausea meds, pain meds and 6000mg of sodium a day since I've been home. Any idea how long the headaches will last, or when the fatigue will subside? Have an appt. with Endo on Fri. and a CT scan and followup with ENT and Neuro on the 29th. Still have my pituitary and they believe they got all of the tumor except for maybe a little around the optic nerve of my left eye. Stanford normally keeps anyone that has pituitary surgery 3-5 days just to be safe, but I certainly didn't expect to be there 16 days. Will post an update sometime after my follow ups.
I'm with Rumpled on the questions about whether you feel better when you lie down or drink caffeine.
I've now had two leak repairs done at the same facility, as you. I would not leave the Bay area until you and your medical team is 100% sure that you are not leaking. Now is the time to fix it. I urge you to strongly question your docs about this. Mainly, because you said that the headache disappeared after that blood patch.
My initial pit surgery was somewhere else. Like you, I had a severe headache after my surgery. My headaches greatly reduced after a csf leak was discovered and repaired. This has now happened twice.
Like you the million dollar question is whether the headache is leak related or nerve related (or both)?
It is also possible that you will need some hormonal replacement and this will help with the fatigue. However you are still post-op and the testing might not might not show this right away. It can take six-12 months for the deficiencies to show up. When you see the endo ask about testing protocol for the pituitary hormones.
So I just found this site and am so glad I did. In 2003 I was diagnosed with a prolactinoma. And was treated with bromocriptine. Since then I have had regular MRIs every 6 months. Just over two years ago I decided to get braces(which stopped the MRIs). In that time I started having prolactin issues. My levels always came back normal so my endo said nothing to worry about, but did put me on gabacoline. In the meantime, my headaches have gotten gradually worse, I am tired all the time, dizzy, gained about 30 lbs, I now have ache, my hair is brittle and falling our, I can no longer exersice, and my arms and legs feel extremely heavy. I felt like my doctor was not listening to me. And I was right. I got my braces off a month ago and called seattles pituitary center at Swedish hospital. My MRI showed a 5mm tumor and my labs show that it is a gh producing tumor. (also found out that my thyroid is not functioning). My next step is to do the labs again to confirm, and then surgery. I am very nervous. I have struggled with pseudo tumor ceribri since I was 10 and I know the pain of csf headaches. Any suggestions on questions I should be asking the doctors?
I really feel for you, sorry. I can understand why you are nervous.I've had 3 surgeries so I can share some of what I would asking, if I were you.
The good is that thousands and thousands of pituitary surgeries have been performed successfully. Also, I have heard good things about the facility where you are getting treated. Good, YAY!
Without knowing your whole story I have a few thoughts that might be helpful. The dry brittle hair sounds thyroid to me, so ask if you can begin replacement on that hormone soon. You've already been diagnosed.
I would also suggest that you ask to see your lab test results and discuss them with your doc. Have him/her tell you which ones are out of range and what it means.
Also make sure that you understand why surgery is being recommended and how it will be done.The technique, that will be used, and the number of surgeries completed [by the surgeon] would be good to know. You should def. ask about the status of your optic nerves and carotid arteries if you have not already be told.
What do the docs say about the initial diagnosis of a prolactinoma vs the current GH secreting adenoma.Do you have two growths; or was your elevated prolactin caused by the GH secreter?
You mention above that you've been battling PTC. Do you have a shunt, or take meds like diamox? Will they be doing and sort of coordinated surgery for the PTC and pituitary surgery?
Is this the type of info that you want, as I can keep on going....?
Horselip gave you some good advice! Prolactin can raise because the a secreting lesion (for another hormone) can press on the area, or it could be a separate lesion (I had that) hiding out so when they do surgery, mysteries will be solved.
Surgery can be scary but afterwards, it is totally worth it! You will feel like a different person.
Get copies of all your tests, and learn up all you can before - and get the pathology report too. Hang in there and post back when you can (it would be best in a new thread - this one has a bunch of people in it)...
Alas, posting at the end of a long thread with many posts that are um, various - it sometimes leads to your thread getting lost - so it may help to start your own thread.
If you have not contacted your own doctor - I would and soon. Six weeks is pretty soon after surgery and things may or may not happened. I hope you followed orders to not lift, how to sleep, straws etc.
It is a major surgery - and some of us take longer to heal than others - what type of tumor did you have?
#1-remove Rathke's #2I had a csf leak after my first surgery. #3Then the csf leak came back.
....Right now i am leaking again...so there is talk of yet another surgery to put in a shunt and repair the current leak which is coming from the temporal bone over my left ear.
There USA condition called Diabetes Insipidus. This is caused because the pituitary surgery caused you pit gland to stop making a hormone called ADH, anti-diuretic homonym. Once they figure out if you have this there is a medication called desmoppression that you can take that will help.
I have a question, how long does the feeling of a brain surgery last?? I had a brain surgery because of a malformation of arteries in my brain that was located in my cerebelum, the post suregery effects i only had them for a few days, i could walk and all my senses where perfectly working, i didn't needed any help for nothing but now I have a feeling of numbness above the area where they made the surgery and i don't know what these could be, may the stretching of the skin or the titanium screws they put on me to seal the skull? Its been almost two months since the surgery. Thanks.
The numbness is probably from the scar tissue forming. I would go back and see the doc - or go see a dermatologist who can maybe do something about the tissue. But it may just need time - but see the doc just in case.
I know after a number of my surgeries - some of my scars had the numb feeling and sometimes a bit of... lighting type pains (brief fast bright pain) and after a time it went away. I get hypertrophic scars - not quite keloids but close.
Need help! My 19 yr old daughter has just been diagnosed with pit tumor and will need surgery... She has been going thru so much since mid senior yr of high school...excessive hair growth on body...major hair loss on head, no period for 9 months and yes...she she has her V card... She is a sophomore at a great university (Theatre) and I'm wondering if any of you can tell me about your recovery time...I have NO idea how much school she is going to miss...she is slated to study in Italy in Jan 2013... I am seriously confused...got the call from her Endo who was leaving that day for vacation and so I have waited a week to finally call her tomorrow...any helpful comments? Thanks!
What type of tumor does she have? Some can be treated with medication.
What is the size of the tumor, and where does it lie? What testing has she had, and is it complete? Is she at a pituitary center - and is her surgeon super experienced - over 500 lifetime? This is very important as experience makes for the best surgical outcome and will reduce the number of hormones she will have to take post surgery, typically (anatomy of the tumor also is a factor).
Recovery varies in us all - surgical recovery is pretty fast in just a few weeks, hormonal recovery is another thing so it all depends on her hormones and not knowing anything about the tumor...
Get copies of everything - research! Knowledge is king here - and make sure you have great people on your side.
Just had pituatary tumor surgery last week and I was wondering if anyone else has the feeling of saltyness like youve been on a desert island excessive thirst that wakes me up every hour also peeing alot. How long does this last. Dr put me on meds but now my ankles are swelling so I dont know if Im retaining to much water even though im peeing alot confused. also I feel like im blowing up weight wise.
If you read up on the rest of the thread you will see others had this same issue and it is not unheard of post pit surgery but it is a great idea to get a lot of testing after surgery and get copies of all testing. Always do that. In fact if you did not do that before surgery try to go back and get old tests too.
Diabetes insipidus may be only temporary but in rare cases can go on for a while or forever. I hope you had a great surgeon as that and tumor anatomy pretty much dictated outcome and how many hormones are lost.
Keep an eye on sodium levels and report the swelling to the doc. Postoperative there can be nasty life threatening complications with sodium levels so keep tabs on yourself.
I've read and re- read everyone's comments and I am scared. I am 32, have a tumor the size of a bloody golf ball in my head and have only one symptom- amenorrhea. I have 3 kids, a job and husband and am so afraid this surgery will ruin my life. I am very active, and need to be. It is who I am with my life. I am so afraid of being unable to care for my family.
I read about the chills, headaches, inability to have energy...my dr says 3-6 month recovery to be normal again. That feels like a lifetime right now. I need to stop being such a baby about my fears, but I guess i needed to say it here cause I am too much of an independent person to admit it to my friends or family.
Thanks everyone for posting. It really helps!
Are you being treated by a neuro-endo? Do you have an excellent experienced surgeon on your side?
Any surgery carries risks - but the fact that you are in good shape now to me bodes well for the future - factors being skill of surgeon and anatomy of the golfball up there.
Surgical recovery and hormonal recovery can vary - surgical is usually not bad but hormonal is variable.
Of course you are scared! It is new, unknown and pretty much all that is on the internet are the negatives - it can go well. You will have to get some help and know what is normal and what is not - so to some extent you have to know enough to know if what you are feeling is ok or the verge of something bad. Some pain ok, a lot no - and sodium levels can go wacky but that is not common.
Start a new thread if you have questions and we are here for you.
Thanks. My biggest fear is my normal life will be over. I just feel like my lack of symptoms should let me escape this surgery lol. I am in Alberta, so I have a neuro, endo, and ent working together. They are all rated on md as great...not the worry of the surgery so far, just recovery. That scares me more than anything. I feel like I am losing my life as it is to have a surgery that may only give me hormone replacements for the rest of my life... It makes me angry I even have to suffer when my life is great today. The fear is the rumour is so large it will soon effect my sight- so why wait till then?
So difficult to know I will have no work, be lethargic for weeks and unable to care for my family for a surgery I have no horrible symptoms- really, what woman isn't happy to be rid of her period? Haha. Thanks Rumpled!
On Oct 22, I had my 3rd Pituitary surgery, 1983, 2003 & 2012, started at age 40. Pre surgery symptoms were similar to those mentioned, headache, pressure and my left eye always bothered me, but the last surgery was the best of all 3. In April, MRI showed that the space was filled, decision was to remove once again, by the same surgeon (he must be close to retirement), I didn't see the surgeon until the third after surgery, he came by and told me that my tumor confused him, he saw cavity when he went it(I knew why as soon as he said that, I'll explain later), he did remove something but unsure of the cavity part so I had to stay for 1 more day just for the MRI he requested. He came back the following day and he was very please with the result. When asked what the cavity meant, he simply put as 'tumor liquidified'
3 months before July 31, 2 - 3 days out of a week, I would have the tumor symptoms, it was very uncomfortable and need to take regular p.m. naps. I was calling the booking office, hoping to secure an early date, just wanted to get over the surgery ASAP but my energy level was good.
On the night of July 31, a relative with the Power of Healing prayed over my tumor, for the following 3 months, I did not experience any sign of headache and other symptoms, I even wrote a letter to my surgeon, requesting an MRI but no response from him, so it went my pre-op and surgery.
I do believe that it is God work, a miracle.
I have been home for 5 days now, had my first blood test, next blood test will be Nov 15. My post surgery symptoms, only headache, dizziness but it doesn't seem to go away I'm on Apo-Tramadol/Acetaminophen for headache and the usual med. Prednisone, Eltrosin ( for the last 30 years).
I would love to hear anyone whose tumor was liquidified
I had just about every symptom of Cushings- it was confirmed and I had a 3 cm tumor removed from my ituitary in August. Since then I have gotten sick a few times- strep, shingles in my mouth, and a virus that would not go away. About 3 weeks ago my body began to ache. Now I have a hard time walking, getting up from a sitting position, going up/down stairs. i won't even attempt to squat down to pick something off the floor. I can't get comfortable becausemy joints and muscles always hurt. What could this be? I am on synthroid and hyrdocortisol. Thanks!
3cm! That is huge - did the surgeon get it all? Was any part inoperable?
What post-op testing have you had and what dose of HC are you on? It sounds like your immune system is compromised. I got a lot of issues before my surgery - I had shingles twice, oodles infections and healing was compromised. I still have muscle issues. Part of the pain issues can be that your body is adjusting to the loss of the high dose steroid and going to a normal dose - steroid myopathy - it is quite painful... when you wean off the replacement dose it will hurt quite more, again. You may need some pain support for a while. Your doc should be aware that weaning and cortisol lowering hurts quite a bit. You should see a rheumy maybe about testing for antibodies - after my steroids went away, I found I was nicely self-treating myself for hidden disorders that came to light. Steroids can hide a lot.
You also have to keep an eye out - my tumor grew back. Make sure you monitor forever. Start a new thread please (this one is long and full of so many other people's comments - it is so confusing!).
I had my surgery to drain my cyst (18mm) which on my pit gland . The Surgeon said it was only water in it and not needed to remove the bag ( as this will required an open surgery which he said only the last choice if he must ) . So I had a laparoscopic surgery , everything went well ( base on what the surgeon said ) and I even did not have any bruises ,except a big long cut under my uper lip ,is this normal in this kind of surgery ? .
Now it s the day 28th but I stil have a sharp strong headache whenever i get upright ,only for about 20-30s but its hurt like hell and coming the same time it s a hot air come out from my nose + noise like bubbles blowed and this hot air smell metallic . Anybody has this problem as well ?
I forgot to mention that I did this surgery in singapore on 25th Oct 12 ,then took a 2 hours flight on the 2nd Nov .. Was not bad during the flight but when it started to land , the blood exuded from my nose ,of course my head hurted badly .
Anyway, i still have a cyst that drained ,and the surgeon left the hole in case if its refilling ( but he said the percentage s very low , 2-3% ) . But the headache comes sometimes does worry me , so if anybody has the similar situation ,please give me some advice .BTW I do have sinusitis , about over 10years up to now and I did take pills for it once about 6yrs ago when the headache went horrible ( actually I went to check for my sinusitis and it was a goodluck in a badluck that they found down I had a cyst on my pituitary gland ! )
It is extremely rare to have open surgeries these days - as well as the surgeries through the lip. Most use the nostril as it is more direct, has a better view and allows for an easier healing for the patient.
It sounds like you have a CSF leak. You need to get to a local surgeon and get help immediately. There may be medications to help - but staying flat and actually coffee can help.
Thanks for your advice rumpled . Actually myself thought it was strange when the surgeon cut under my lip cause he used my nose as well ... Dont know if it helped me not to get any bruises on my face ??!! . But my surgeon s one of the top 3 in singapore so I should trust him i guess thou he keeps asking me to wait to recover .
But you are right, i should check with the local surgeon before it gets worse.
My surgeon told that I had not only a cyst but also a bag full of water sticked on it , so they had to first remove my cyst then drain the bag and their choice that to get rid of the water throu my mouth .... I dont know if that makes sense but i hope he did not cut my lip for fun !!
The pill im taking Arcoxia 120mg ( etoricoxib ).
I will go to check if its a CSF leaks tomorrow and will take MRIs as well.
Thanks for your advice rumple
There are different surgical techniques - upper lip used to be common and is still used but nostril is more common now. Sometimes the choice is for anatomical reasons - it could have been that for you.
The nose is connected to the throat. Plus a surgeon would use suction?
You are only on a pain medication? Have your hormones been checked? I am glad you are being checked for a CSF leak. Surgical recovery usually only takes a short while and you are past a month so it should be done so it seems something is off. Hormonal recovery typically takes longer.
Did you get copies of your pathology report and surgical reports? If not, I would do so.
I dont really know honestly .. Just know that my operation took 4 hours , but one of my cousins had pit gland tumor and his only took 1hour , and like you said , they used his noses , nothing else . However my cyst was located in a very difficul place, it was hidden behide the pit gland and up to close to the brain + there s a piece of bone right in front of my pit gland ( they had to take CT scans to make sure if they could do laparoscopic surgery for me ) so the entrancing was narrow..thats all I was told..
Yup, only that medicine plus other pain killer + pill to protect my stomatch and pill to keep my noses clear..thats it.. They did check my blood but im not sure there were anything to do with my hormones... I have my MRIs ,CT scans , blood test reports but not surgical reports ( as my surgeon said the operation went so well that they did not even put me in the recovery room that was why I did not ask ,plus did not know anything about it ) ..
Thanks rumple.. Find your advices are really helpful !!!
I would get copies - make sure you know. If the cyst was *on* the pituitary, you may need some hormonal support at least temporarily. And things do change after surgery - the pituitary is not fond of being handled.
I would advocate as I do usually - get copies of everything and make sure you know where the cyst was and what was done - and lab tests before and after (and always from now on). The surgical report would give you details on why it was 4 hours - that is pretty long. Pathology would say what they found.
I do have everything except the surgical report .. I dont know much about hormonal support but very sure I do need some pill to help me to be back to normal sleeping time as have been on a reverse sleeping schedule ,and does not matter how well i slept during the night ( by pills ) ,then i still sleep during the day as very tired ( specially around 9 to 11am , and 5 to 6pm ) . Anybody else have this problem ? And why ? What can we do ? If its normal after the surgery ,then how long this will take to get back to normal ? Im really strugling with this problem thou I stay home to rest but I have a business to run and this problem would hurt it .
Thanks again rumple and lets see what on the MRI tomorrow !
I don't normally run across that from surgery - just jet lag. Any melatonin tests? Was anything near your pineal gland? Or your cortisol cycle is off. It is rather normal after any pituitary surgery to have a cortisol replacement to support you for a short time.
Thyroid may also be off. That is why I asked about hormone testing.
Can they find out the CSF leak by take MRIs and CT scans? Cause im back in Singapore and went to see doctor but he said the pictures look good now so he does not know why I still get pain . Then he give me 7 days pills which makes me sleep lots ( I ll sleep all the time if dont need to get up to take pills in time ) .. Please advice me as I cant force the doctor to check the CSF leak for me if I dont know fairly well about it.
They can take pics - and they should also look to see what comes out of your nose and take swabs. Sometimes the holes are tiny and keep in mind MRIs are 3mm slices - so a hole can be much smaller than 3mm and still be leaking! An MRI is much better at soft tissue, CT with bone. The swab could be done locally to confirm the leak before they do imaging.
The *patient cheat* is to use a friend with diabetes - mucus has no sugar in it but CSF does - so fluid with a reading on a glucometer is likely CSF. There is also a method using a coffee filter - mucus does not spread but CSF spreads in a ring pattern.
Horselip is much better at these questions - she actually has one - and lives with one, sadly, long term.
Hi, I have been reading your posts re: pit tumor. My husband just had his pit tumor removed and the entire tumor was removed and the pit gland saved. The only problem is his battling to sleep at night and is forced to take a sleeping pill.
Hi.. I stil have the bag in my head cause to take them all out ,it ll require a major open operation so the surgeon just removed the cyst and drained the bag throu he knows the fluid might fillfull the bag oneday . Talking about messing with sleeping schedule , doctor gave me Seduxen but did not work ,so recently he gave me a punch of heavy duty one that makes me feel like I sleep to dead however its slowly getting used to the pill and now its 2am , 1h after taking my pill , im still here writing to you ;) .
Your husband s very lucky thou . Me, not only sleeping problems, I also think I have CSF leak but the problem s the fluid does not pour out like a river , hardly any from my nose , but just from the back of my nose so cant tell what it is .. And the fact I keep talking about it to doctor makes he think Im going insense ,so he gives me some pills which s only use for people have mental problem ... Its sad when sometimes doctors think they know almost everything but the true is they never experienced themself . But Im being a good girl, taking pills everyday only to prove that its not helping my headache . As we all know that nobody understand our own body than ourselves, we just dont have enough words to describe it ! Tomorrow s the last day im on pill ,then after that doctor ll have to check what i ask for thou 1000 times i hope he is right that im ok ( as dont like the idea that he thinks im crazy ) then I can cross check on it and work on some other plans to find out what cause me the pain.
Please see my previous reply to momcat. I am wondering if your hypersomnia could be related to the pituitary tumor? I have been recently suspected of having "secondary hypothyroidism" which can be caused by a pituitary tumor. I was checked for one in the last 1970s after the birth of my child b/c of galactorrhea and high prolactin but scans were negative.
I finally took the operation to fill the holes in my head which caused me CSF leak thou there was no liquid came out of my nose neither any leaking that I could see ,even the doctor could not see anything wrong on the MRIs . But there was a little tiny hole , so would like to share my experience with everybody . Hope this help anybody who having headaches like i had .
Happy new year !
I truly learned alot while reading ur reply My daughter who's 20 now had a Rathke Cleft Cyst of the Pituitary Gland which was sitting on the left eye socket nerve she was 1st diagnosed in Feb 2010 she had 3 surgeries from April 2010 to March 2011 all 3 surgeries she had complications after surgeries Because of this Cyst she has low thyroid low cortisol and adrenal insufficiency as well as peripheral vision loss but that came back after her 1st surgery she also has a severe learning disability and ADD but was taking off the ADD medicine pretty much as soon as she started it as a young child because her brother who had ADHD got Tourette's from the medicine before she was 16 yrs old I applied for SSD and or SSI for her she was denied of course but we have been still fight for it thru a lawyer now and this was way before any of the Pituitary issues or other health issues due to it arose she has alot of trouble falling asleep at nite but once she does finally fall asleep in the very early morning hrs will sleep most of the day away I think the sleeping has alot to do with this Pituitary issue she alot has gain alot of weight but before being diagnose she was very sick and lost alot of weight 60 lbs suddenly she now had severe headaches all the time and mostly her left eye goes blind for anywhere from a few seconds to a few mins she is now seeing a Neuro-Opthalmolgist who has just done blood work with over 18 different tests but nothing was found and he has ordered a CAROTID ULTRA SOUND which we are trying to get done as soon as she is feeling better she's sick right now she also sees a Neurosurgeon, ENDO , ENT, beside her Pediatrician still and will start back with a Neurologist the drs don't know why she's has the headaches or this blindness and I wanted to make sure she doesn't lose her vision with this type of Cyst they say it's a birth deffect so we think she was walking around with it for almost 17 and a half yrs I just don't think many people know everything anyone that has a Pituitary issues has to really truly deal with anyone have any help or suggestions plz I'm willing to check into everything I can thanks so much for just reading...
I also forgot to mention that I had taking my daughter to a Neurologist for a second opinion as to why she was always falling and breaking all different kind of bones at one point she broke her left wrist and within 2 week she broke the right that is why she was seeing a 2nd Neurologist who ordered the MRI that found the Rathke Cleft Cyst the 1st Neurologist said it was her weight and referred us to their Endo department at St Christopher's Hospital for Children. I could go on and on about this subject and everything she went through and all the problems she still has I think because it of
I would highly advise you find a pituitary center. The neuro-optho is a fantastic idea while a neurologist is simply not trained in pituitary. They may be able to order a scan, but they don't know the testing and the proper surgeons (who need to be super skilled) to treat the lesions.
Sadly, a lot of us have multiple issues in many different areas due to pituitary hormones. It can effect you anywhere.
I would suggest checking out the health pages - in particular the Magic Foundation may be of help to you. You need a specialized center to help with your daughter. I wish you had started a new thread - it is hard to keep track of new storied in mixed up stuff like this.
After reading all these post I finally found someone with the same symptoms as myself. After the pituatary surgery I had pain so severe I wanted to die. It was mainly on the right side of my head. The doctor could not give me an explination. The medicine that was given to me might as well of been a grape. I know this sounds crazy, but the pain was so bad after the surgery two days after I got home I had to literally cut my hair off. My surgeon is being evasive when I ask key questions which makes me more suspicious. This is my life. I am going into the 7th week and I have healed 75% but now I am at a standstill. I don't know if this is part of the healing or if there was a mistake made. I did not have these constant headaches prior to surgery. My son asked me why I drink so much water now? I cannot lie down. It hurts something horrible. It feels as though flluid is gathering at the back of my head. Of corse this means I can't sleep. My job is lifting all day. Some of us can't stay off of work forever. It was determined that I did not have diabetes and there was no hormone treatment necessary. My symptoms don't appear to be typical. My headaches are 24/7. My quality of life is not the same. I by nature am not a sickly person. If there was a complication during the surgery would the doctor have to put it in the report? My report says no complications. I go through constant prayer and meditation as to not add additional stress to the situation. I walk one hour a day. Medicines only dull the pain, never relieve it.
I hope that your surgeon is not the only doctor post-op - you need a neuro-endo after (and actually before) pituitary surgery. If you are drinking that much water AND peeing it out, it sounds like diabetes insipidus which is not the diabetes everyone talks about (sugar diabetes) but water diabetes - and you need to get testing and meds to get control.
After pituitary surgery it is highly likely that you will be on at least one if not more medication for the rest of your life. You may have had some hormonal loss and you have to replace. Some of the loss of hormones can be life-threatening so it is important to know what is going on. While a surgeon is an expert at cutting, they are not an expert at the hormones so he/she would not know that.
As for the pain - that is not typical. However, I have had myself after a second surgery in the area gotten trigeminal neuralgia. These nerves don't always lie in the same place in every person - even my dentist has to hunt around for me for numbing me. So I was miserable too. I suggest that you find a neurologist that helps with pain - specifically nerve pain - and there is a class of meds to try that may help you. The meds do have side effects but you have to try and see which one works with the least side effects.
That is my best guess based on experience. I also get horrible headaches when my sodium is low and cortisol is low - so if you are not on a cortisol replacement that can also happen.
You can get a quality of life back - but I don't know the replacements you are on (AND YOU NEED THEM! sometimes just for a while while the pituitary heals) and then wean back off. You need a pituitary center! I hope too that your surgeon was super experienced.
I advise getting a copy of your pathology, surgeon's report and labs - pre and post op. BTW - what type of tumor did you have and how large?
I just had the surgery a week ago. I have sneezed, coughed, sniffed, laid flat - I have not blown my nose. I had no choice but to sneeze & cough. They told me I could as long as I did it with my mouth open and nobody said anything about laying flat. As for sniffing - are you kidding me? All that stuff in your nose and you aren't supposed to sniff? Okay, now I am worried - is sniffing really a problem? If it is then I have a major problem. I am really feeling very tired, like I want to sleep all the time - very exhausted. I sleep with a CPAP machine and can't use it right now so I am using an oral appliance that is only 30% effective but it's better than nothing. I have found myself waking up out of a sound sleep taking a strong sniff in through my nose to unclog it. I hope this isn't a huge problem.
Yes - the sniffing is a problem. You cannot use a straw - sneeze or do anything that will put undo pressure on the surgical site. You can open the site - akin to opening any surgical site only it is a bad place and you can develop a CSF leak. Then you will need more surgery.
Try this - take a biggish bowl of salted water (throw a good couple of spoons in there) and microwave it until super hot. I usually put a silicone or other soft trivet to help handle the bowl. Hang your head over the bowl and hang a towel over your head and steam yourself until you are clear. Repeat as needed.
Ask your surgeon how he feels about saline spray - some allow it, some do not. That can help if allowed. Also a humidifier or vaporizer. Some like to sleep more propped up - in a lazy boy type chair or wedge pillow.
I am using saline spray 3x's a day and Nasonex once a day. I have sniffed quite a bit - haven't had any pain (or drainage that I know of). Whatever drainage I have had has been clear but it's minimal. I see my ENT on Wednesday so I'm sure I will find out some answers then. I started taking my garlic supplements again and those seem to be helping the mucous thin out so it's not so disgusting. I am a nose breather so when you tell me I can't do this that or the other that has to do with my nose - it's tough. Also this time of the year is difficult for me because of my sinuses - I tend to be a human barometer so I'm constantly having sinus congestion problems. And when you live in Central NY it's a day by day thing. I really feel good, better than I thought I would. I just hope the doctor tells me I haven't screwed anything up by all my sniffing (and sneezing and coughing). I failed to mention that the pituitary tumor I had is associated with Acromegaly. The neurosurgeon told my husband that the surgery was 100% successful. I'm assuming that means they got all of the tumor.
I saw my ENT yesterday. He cleaned and suctioned out the junk in my nose. That was fun!! I'm not a fan of things like that but boy can I breathe better. He told me I could blow my nose lightly - that was a relief. He said to use a saline spray rinse because there is still a little that needs to be cleaned out of my sinuses. All looks good but he did say to take it easy still. Most of my life I had no problem taking it easy but I feel so good I would love to start exercising again and go back to work but I won't be foolish.
I will definitely get a copy of the pathology report - thanks for that tip.
I will post again after I see the neurosurgeon and the endo dr.
Hi I just had the same surgery Jan 14 2013 . The hospital stay was 6 days I wanted to die most of those 6 days. Now home I am so stuffed I to have been sniffling . My husband asked do you think you should do that ? what else am I suppose to do I can't breath blow my nose or take it anymore. It all takes time but I get frustrated and all the meds they sent me home with don't help the problems either. I currently have D1 under control with meds. Going to Dr. Thursday for first post op I guess I'll see how that goes.
Peachesbaker 12, You poor thing!! I truly feel for you. I would not be happy either. I was only in the hospital 1 day - surgery Friday - home Saturday. I've really had absolutely no problems since I've been home except I am now VERY foggy and off balance. Is this common? How long will this last., Rumpled? I'm not sure what D1 is - can you explain? I don't understand why the dr isn't having you use the saline spray. It's really kept me quite clear. I also use Nasonex as I said before, once a day. And I take Allegra once a day. I used the NeilMed Sinus Rinse yesterday. I am not fond of it. (The ENT never told me how often to use it - he doesn't talk at all and I've been so foggy I can't think right so I never asked him any questions - tell me why these doctors don't give you an instruction sheet to follow!!!!.) It made me feel like I had been swimming - I'd rather not use it but I will if I can find out how often. BTW, I saw an ENT because he was part of the surgery. I agree with Rumpled - you definitely need to call your doctor. Let us know what happens.
I believe D1 is DI - diabetes insipidus. Water diabetes. It can be a temporary complication after surgery where the hormone ADH gets wonky and the body cannot regulate fluids so the person is thirsty but the fluids are immediately passed.
Some surgeons allow saline, some do not. It is just the philosophy of the surgeon. The steam should be ok. I was also advised a humidifier is fine - it goes without saying all this has to be super clean.
Sinus rinses are not great. I had a huge infection after my surgery and had to be re-opened surgically then use a water pik to rinse my sinus twice a day. My hubs said the screaming bothered him as well as that I had to show him the giant scabs (that is the story I am sticking to) that came out.
I was not allowed to use steroids (as in the nasonex) - but then again, my tumor was a steroid producing type. I had enough of that.
Foggy - post anesthesia and major surgery... give yourself a break. It takes time to get back to yourself. You are still healing!!! It can take a few weeks to a month for surgical healing, hormonal is another story - that is longer and varies. Not sure for your tumor not experienced with those patients - but it takes a while longer than surgical typically for most.
Thank you for saying that. I am not dealing well. This fogginess has really got a hold on me. Surgically I think I am healing quickly but hormonally I think I am a mess. I've been crying quite a bit today as I am doing right now. It's not helping my sinuses any. I don't like feeling foggy. Part of it is anesthesia but I have had a problem with fogginess periodically through mty life. I thought once the tumor was removed I'd never have to deal with the fogginess again. We thought it was related. Back to square one I guess :-( It's so disappointing. Maybe once the fogginess from the anesthesia is gone and I go to the endocrinologist & get the hormones tested things will be different - I can only hope.
It is good you reached out. Hormones make us a mess. I know that post op I have recovered a bit and *look* better, but my tumor left me with a lot of hidden damage and I am on disability. Most of my friends (the few I have left) and family cannot understand - of course this is after years of telling me to diet and exercise.
The tumor itself has impact on hormones and that makes, in most from what I know, for foggy brains. Post op it can and does get better but I must say that a lot of us don't get 100% back - it is a percent and that percent can vary from a lot to a little depending on length of illness to severity etc.
This disease took a long long time to creep up on you and it is going to take a while to recede as well - so as frustrating as it is, it is not one where you have surgery and come out on the other end like a new person. Bleah... I wish! You need a lifetime of monitoring and may need changes to the hormones you replace, and other hormones may need to be added.
Pretty much my support system is only people that are in my same boat - aka other pit people.
You made reference to diet & exercise - why? Did you gain weight? Lose? I work for Weight Watchers. One of the things I had problems w/was weight gain & it wasn't from anything I was doing wrong - I would gain weight & not be able to lose it. After my surgery the weight started going down fast. After 13 pounds down it has stopped & I'm at a standstill again. My endo when I first went to her told me i needed to stop eating so much - I was insulted. I have followed WW for 34 years - my weight gain was not from eating. I counsel people how to get rid of weight - it stopped working for me.
You have painted a bleak picture of life w/acromegaly. Why don't you have any friends left?
Like you, I just wanted to say that I've gained weight too. And it really requires a ton of focus for me to lose one pound. I even have a B.S. in nutrition and was a Registered dietitian.
Ease up on yourself!!! When doctors (and others) say things like that it makes my skin boil. It can be hard. I once had a doctor that I disliked so much, because of those types of statements, So whenever I meet another pitpat that lives in my area we talk stink about this one endo.
Because my feelings were so hurt, I made a little voodoo doll and wished that she would get a pituitary adenoma and blow up like a balloon. Mean, sure. But it made me feel better and i moved on.
I don't have acromegaly but i am panhypopit and deal with a bunch of medical schtuff.And yes the pituitary gland, taking steroids, being less active and hypothalamus stuff has made me a little more generously proportioned than I would like...
Most of my good friends from childhood are still in my life. And my family is supportive. But no one but a pitpat "Really" gets it.".. I had probs with my folks in the first few years that i was sick. But I kept educatiing and even started bringing my mom with me to some of my medical appts.I think that this is what really helped us, but my mom was open to it. My pops cares but does not "get it". He never will, I think.
Not everyone's folks are still alive. And some of us have family that don't care to make that effort. I have found that by being involved in forums such as this one.your fellow pitpats just get it more because they deal with some of the same stuff.
So yeah, things can be rough. But I feel very lucky to be alive , most of the time, : ) and have a decent life. It's just different than I thought it was going to be.
Sorry I painted such a bleak picture - I am in the midst of a pity party...
I had Cushing's disease. If you look at the pics on my profile, you will see that I gained quite a bit. Not every tumor causes that - however, acromegaly can cause some physical changes. Met a few patients just not in the network where I am in regular contact. I know my tumor changed my appearance drastically from my face to my body and I have never regained that back. I eat a pretty healthy diet (except for oodles of salt, which I need) and I track my food but more than one doc has called me a liar to my face.
I am panhypopit now too. And no one around me really gets it. My husband is pretty good - he has kept me alive a couple of times when my cortisol gets wonky low and I get too stupid to take meds because when my cortisol drops, I can't think. But the rest of my family pretty much thinks I am ok, a freeloader, and why do I sleep so much? I should exercise more, etc etc.
I had a great job where I was a manager, traveled a lot and was in a fast paced work environment - I just will never be able to do that again and it makes me very sad. I miss work and my old life and frankly no one understands the loss and just dealing with a new body, the hormones and all. I feel lucky too - I am alive, but I just won't be like I thought I was going to be.
Friends just don't know how to deal with the *new* situation. This is not unique to us pit peeps though - my cuz with cancer said the same thing happened to her so when she recurred, she spoke to me about it. People don't know how to be around us. What to say. I know my hubs is tired of the tumor talk but it seems every time we pits get together, it happens. LOL.
I wish you had started a new thread... this one is a hodge podge of different people's stories.
I had Cushing's myself. The FDA has recently approved a couple of medications for Cushing's however they are not great for women unless they are post-menopausal or have had children since they greatly effect estrogen.
Surgery was the only option before and I had it. Your neuro-endo has to evaluate if you are a candidate for one of the medications, or even a short term course of ketoconizole which has side effects as well.
Cushing's has to be treated - it cannot be left alone as it is a destructive disease. The destruction may or may not be evident, but it is there is most people but the degree can vary depending on length of disease. Test levels is not an indicator. I suggest you find a very very experienced surgeon as the tumors for Cushing's are very difficult to remove as they are typically softer than most other types. In any case, experience is always needed to have the best outcome no matter the type.
I know I need to learn as much as I can about life wtih acromegaly and I certainly want the truth. It's just hard dealing with things when I'm in this brain fog and I'm so exhausted. You've had a lot you've had to deal with - much more than me - so I really should keep my whining and belly aching to a minimum.
I looked on your profile page but didn't see any pictures of you. My brain probably wasn't computing at that time - I will look again.
I really appreciate all that you have shared Rumpled - the more you share the better for those of us who want to know everything and are knew to this. So my question is do you have Acromegaly or was that not one of the illnesses you've had to deal with?
I have it restricted to friends - I just added you.
I did not have acromegaly. I had prolactinoma and Cushing's disease. I have met several people dealing with acromegaly though and they seem to have a lot of the same issues - with a few differences thrown in but I don't keep in touch with them.
The brain fog is AWFUL. I actually started dealing with brain fog when i contacted Mono when I was 16. I would deal with it periodically throughout my life. I lost a couple of jobs because of it - I would stay out of work for long periods of time because I couldn't think straight - my reflexes were slow so I was afraid to drive - I had no idea what it was - my doctor was not any help, he would put me on antibiotics and send me on my way. And this is how it went for years & years until I thought I had Chronic Fatigue Syndrome. I diagnosed myself because of symptoms. That was when I started pushing through the episodes. I learned how to live my life & live with the symptoms. A few year back I was tested for sleep apnea & discovered I have severe obstuctive sleep apnea. The brain fog seemed to stop happening for a time. I had to havesurgery a few years back & because of the anesthsia (I think) after surgergy I was in a brain fog for a whole year (a very difficult year for me). Then it was discovered in during that year that I may have Acromegaly. I waited almost a whole year before getting it checked out - why I don't know - stubborn I guess. I finally went to the endo & it was confirmed - yes, I have Acromegaly. I was so happy I had an answer. FINALLY!!! I thought my brain fog would be no more - HA! A week before my surgery the brain fog visited me and decided to stay I guess. And it's worse than ever - fun for me! Then I read about all the other issues with this illness & I thought I was cured. HA again. God help me!! And He has & does - I could not have gotten this far without Him. He is my Help & Comforter & the Glory & Lifter of my head. To God be the glory!
It can get better - but I can tell you that most of us hope for sudden changes after surgery but most of us find that the changes are as gradual for the better much like we noticed the changes for the worse.
As I said my patience is not on a high level. Do you know if there is any way to reverse these posts - as in most recent first? BTW, I am so glad I found this site. It's comforting to know I'm not alone and when I say brain fog or spacey I'm understood. It makes dealing with this bearable. A special thank you to you, Rumpled.
I just found out that I have one of the nations best pituitary clinics within 45 mins of my home. I will be going to see them soon. Knowing that there is a clinic that close, and that has a lot of experience with this type of problem, makes me feel considerably more at ease.
i have microadenoma. i am 30 yr old female. i have been on dostinex for going on 3 months. doctor said it would be ok to take half of a .50mg pill for the last few weeks because of side effects. then bloodwork got done this past week and my prolactin level is now a 1.8 it should be a 4.8 and no lower. so now i have to take the whole pill once a week( half a pill twice a week). i am ok with dealing with the side effects if i dont have to have the surgery. heck i will take whatever the doctor says to just so i dont have to have the surgery. after reading up on it and also seeing peoples post surgery comments. i dont like surprises so i looked it up on the internet and i am scared to have it done. i know it can grow and wrap around my artery and do damage but i dont know if i can handle the damage it may do to have the surgery. i am married and have a 7 yr old son to think about. my son doesnt even know what i am going thru and wont unless in a couple months i am told the surgery is what has to be done. i had hormone tests done while on birth control and my levels were really low. so i got off the birth control and 3 months later my levels were better but my prolactin level wasnt. so i switched to a better doctor and he did an MRI and found the tumor. it is less than 1mm when that MRI was done. i just want this over with and i am praying the dostinex takes it away cause 6 months is coming up fast and when it is up I will have another MRI and if it isnt gone I am gonna have to have the surgery. i am happy to have found your comments so i know what i am getting into. but I have had meningitis at age two(which i dont remember but mom said it was horrible cause i almost died) and i dont want to have a leak post op and open myself up to meningitis again. there are risks with every surgery i know but i am not ready to take those risks. i hope my doctor being optimistic about me not having surgery is true .
I am sorry for what you are going through. It always seems very scary in the beginning - but you are not alone. You also have to realize that the people that are posting on the internet are not indicative of the whole population - they are seeking more help so it can be skewed a bit more to the scary stories. There are people out there that manage on their meds with a prolactinoma and do quite well.
That being said, I hope you are being treated at a pituitary center. For a 1mm tumor, it sounds like it must have been a dynamic pituitary MRI? Smaller tumors and heck even some larger ones won't wrap around an artery. They can grow up and grow down - but most of them really don't get big enough to do that. Mine (both of them) were around for over 12 years and neither got very big. So it really just depends. I had the surgery and I know many people that had it - it is an anatomy issue as well as a surgical skill issue in whether you get a leak - so they are not common. So while I understand the fear after what you read, I can tell you in reality, it does not happen often. I had the surgery and I must say if you use a super skilled surgeon, it is not bad - I have had 12 surgeries and it was among my easiest. Hormonal recovery was not fun or easy - but the surgical side was not bad at all.
There are other medications to try - parlodel - as well you can try different dosing regimens - more often with less dose etc. nights with food - talk to your pharmacist.
Most prolactin tumors are treated with meds - as long as it responds, you won't have to worry about surgery. But you have to stay on the meds forever for the most part. I would appreciate though if you would start a new post for questions. This is a long thread with so many stories in it - very confusing to find things.
I had 2 Pituitary Surgeries and my BLA (Bilateral Adrenalectomy) At UAB. Dr Riley is my Neuro there and she is awsome! And Dr Porterfeild is who did my BLA. I was in remission for 6 years after my first Pit surgery and in 2011, I had a reoccurance, Pit source, even though my pit was removed totally in the first surgery. the 2nd surgery was unsuccessful of removing any residual cells, they were most likely in the carnivorous sinus. In July of this year, I had a BLA, my levels are good and I am dropping weight. before my forst surgery I was 320 and went down to 160, had tummy tuck and breast reduction. I am now 210, only got to 231 this time but still a huge gain. I hope you like UAB, they are AWESOME!!
Hi,my names Ella, I live in the UK. I had surgery to remove a non secreting tumour 19 months ago. It was 9mm when they operated but it turns out they only took the coating out-there was a cyst inside. Now I have a 5mm cyst in my Pituitary Gland. My surgeon didn't take a tissue sample but thinks its a Rathes Cleft Cyst. I have numbness in my 4 front teeth and upper mouth from the lip incision and still experience soreness in my sinuses. I have regular MRI's but my 12 yr old son has Friedreichs Ataxia and is unable to walk,feed himself or bath himself and Im worried that surgery may be needed again in the future-has anyone else had partial surgery or the cyst left in?
I had a pit gland tumor removed 3 days ago. I was not put on any meds besides saline spray & pain pills when discharged. I too gained LOTS of weight from the tumor, 60 pounds. Did you have to exercise excessively, day & night to lose weight or did it decrease on its own since the tumor was gone ?
This is an old thread with stories from many people - which makes it ever so confusing.
It helps, in future, to start a thread (a new post) that is all about you.
If I had to guess, it sounds like you had Cushing's. I had that as well. If so (and please find out as it could be acromegaly or another tumor. So it really helps to know all the details on your tumor.
If you do exercise, you can do damage as the cortisol can effect muscle and bone. Other hormones can also have long lasting effects. Once the tumor is removed, your body will slowly return to normal - but it may be a new normal. Some do drop all the weight, some don't. It has only been 3 days - there is surgical recovery and hormonal recovery. Be patient with yourself. You cannot exercise now anyway until you recover surgically, then you have to know what the hormones have done, and replacements etc.
I had my huge macroadenoma (pituitary tumor) two days ago, spent only one day at the hospital, and the surgery has been a success (all of the tumor was removed).
Prior to my surgery I, too, gained 50 pounds. I notice I've completely lost my apetite, but that is probably because my nose is still packed with filling material from the surgery and I can't smell anything, thus food is tasteless.
I'm feeling pretty well considering this has been a major surgery. The only side effects are extreme thirst and peeing (temporary diabetes insipidus, it is getting better now), nasal congestion, and some random headaches (I'm taking fiorecet for that).
I had a tumor the size of a small a third eye in the back of my nose. Pretty bad, yet I was standing the next day, texting, reading websites in less than 24 hs. I was lucky to be in the 95% with no major complications. I just hope that my hormone levels get back to normal too, so I can shed weight (I'm 150 pounds now) and my amenorrhea is fixed up.
Hope that my testimony is useful, good luck everyone!
My tumor was removed October 2013. So its now a bit more than a year after the op. All my hormone tests are right no problems there. But i still suffer from aches and pains jumping through my body like little lightnigh flashes and freaky twitchy feel toes and fingers especially when im relaxed or trying to fall asleep. I get cold super fast but my right arm feel like someone is injecting ice water into my bones and is way worse than the rest of my body then other days it feel like my muscles are littterally on fire burning from the inside out. My finger nail beds burn like crazy sometimes. About % months after the op i started getting super dizzy when i move forward walk fast or drive in a car not when i sit lie down or stand up fast. It feels like someone is compressing my brain squeezing it together on both sides i feel dizzy my heart starts beating very fast my legs go lame all just in a few seconds then the cycle starts again??? does anyone have these symptoms ? marissa.***@****
My tumor was removed October 2013. So its now a bit more than a year after the op. All my hormone tests are right no problems there. But i still suffer from aches and pains jumping through my body like little lightnigh flashes and freaky twitchy feel toes and fingers especially when im relaxed or trying to fall asleep. I get cold super fast but my right arm feel like someone is injecting ice water into my bones and is way worse than the rest of my body then other days it feel like my muscles are littterally on fire burning from the inside out. My finger nail beds burn like crazy sometimes. About % months after the op i started getting super dizzy when i move forward walk fast or drive in a car not when i sit lie down or stand up fast. It feels like someone is compressing my brain squeezing it together on both sides i feel dizzy my heart starts beating very fast my legs go lame all just in a few seconds then the cycle starts again??? does anyone have these symptoms ?
Nothing against you Yehuda88... but this thread is a confused mess!
The person you are posting to is mixed in and in a part that is 6 years old, so sadly I don't know if he will see it, but yes, you do have a point.
I do hope that NO ONE will ever post in this thread again... it is so much nicer and easier when you post in your own thread so you have all responses to one story in one place.
It is also harder on phones for a long thread like this to load.
Thanks for having a great blog/info list here. It confirms a lot of what I have been going through but most importantly that I'm not alone. Would have been even better if I found it pre-surgery.
I'm a week out from surgery and going through the pain management scheme so it was good to gleem the length of time this could take. I look forward to the next chapter but my question is on the physical recovery. After the removal of the 24mm tumour and a small CSF leak there must be some idea as to when the Pituitary and surrounding structure settle into a new position and the WTF headaches subside.
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