Hi, my husband recently found out that the approx. size of the enhancing mass was 2.2cm in longitudinal extent, 1.9cm AP and approx. 1.6cm in transverse diameter. The mass extended superiorly into the suprasellar cistern and was slightly lobulated in appearance at its superior surfance. The pituatary stalk itself could not be demonstrated on the sequences and the cavernous sinuses were well demonstrated with normal appearances and without involvement with the cavernous sinus. The scans through the pituatary gland region does reveal the mass positioned within the pituatary fossa which was intermediate signal intensity on the T1 study, high signal intensity on the T2 study and did enhance fairly intensely with contrast medium on the post Gadolinium studies. The internal carotid artery was well demonstrated within the cavernous sinuses. Pse. explain how big is this tumour. What is the best treatment option. Regards, SHENAAZ
As far as pituitary tumors go, sadly this is on the larger side hence the *macro* adenoma call by the radiologist. I am only a layman (aka not a doc) so my read is not perfect but a guess - it says the tumor has grown up around the stalk (the stalk cannot be seen in the images) and the cavernous sinus is clear which is good.
I however cannot really tell if the tumor is near your optic chasm or if it is wrapped around the carotid - it does seem by what the report says the thing has pretty much filled the pituitary fossa which can be good in making it much easier to remove.
Treatments can vary based on type of tumor - has your husband done any blood, urine and/or saliva testing to determine the type of tumor? Some tumors can respond quite well to medications and the tumor can reduce in size with the medications and not require surgery or lower the risks in surgery.
Surgery may be the only option for certain types of tumors and if the tumor does not respond to medications (if that is an option). They should go through the nose and you should find a surgeon who is very very very very very skilled - as in has done more than 500 surgeries lifetime and more than 50 this year and has done quite a few of the macro tumors as they are more difficult and can have more potential for complications. Surgical skill is THE biggest factor in outcome of the patient - of course sometimes the anatomy of the tumor can work against him/her but you want the best to do it so don't mess around do all you can to get the #1 surgeon.
In the event that some of the tumor is left behind which is common in larger tumors where a surgeon cannot and should not get too close to say the carotids or the optic nerve, radiation is common. I would research the types and get the best type and not take what they have but what is best as the pituitary tumor is deep and some types do impact all tissues on the way in.
Please keep us posted on his health, type of tumor and let us know if you have more questions. There are resources in the health pages that may help. I also suggest you get copies of everything from MRIs to labs.
I would not see a "neuro" for this - please seek out a neuro-endo at a pituitary center for the proper course of treatment. A neurologist is not properly trained to treat pituitary and may not suggest the proper routes.
This requires specialized treatments - try a university or larger hospital. A regular endo may *say* they treat pituitary, but they may or may not do it well - so you really need a pituitary center so that your husband gets the proper testing (testing needs to be at the proper time, lab error is a huge factor! it kept me from being diagnosed for years!) and monitoring after removal as these beasts can come back as well as he will almost surely need one or more hormone replacements for life, living and quality of life - this is not something to play with.
Without a range (every lab in every country differs) it makes it hard to tell! If that is elevated and that turns out to be the tumor, medications should be tried first as medications can (but not always) work on prolactinomas. There are two options (but may be three depending on your country that I know about).
They may want to debulk the tumor - but meds can work before surgery to reduce the size of the tumor as well. I would make sure that they do ALL the hormones as while prolactin can be elevated (or low), it can be the pressure of the tumor aka mass effect and not really the tumor. So it is important to get a really really good endo as well as the #1 surgeon around.
Thank you so much for further advice. Numerous blood tests were done today. Hoping to get results tmrw. Unfortunately in the Republic of South Africa, there is no Pituatary Centre, but I am trying to get an appointment at a good endocronologist. I dont know if we have a neuro-endoc in this Country. Will keep you informed. Thanks.
Thank you so much for info. contacted someone at PICOMSA. Awaiting to hear from them. All blood tests are normal except of Testo reading 108 and the reference is 180 - 739 which is low. Now I am more confused. What type of tumour is this. Does not look like Prolactin?
Some tumors cause high readings - that means the tumor itself is secreting. When the hormone is low, the tumor can be impeding the hormonal secretion either by pressure or another hormone interfering - often those with Cushing's (elevated cortisol) have low testosterone. That is why it is important to get lots of hormones tested and the entire loop. Hormones work this way - the hypothalamus signals the pituitary, the pituitary signals the gland and then the gland secretes and signals back completing the loop. Hypothalamus issues are rare so it helps to test the pituitary to gland loop to see what is the real cause of the issue. Multiple hormones can be involved - like in prolactin type tumors, androgens (estrogen, testorones LH FSH dhea sulfate sex binding hormone) should all be tested. Keep in mind that there are many forms of testosterone as well so make sure they do bio-available so it captures all the types - so it pays to know the tests (in some cases better than the docs) so you get tested effectively.
It is very confusing. I hope you find a good doctor - just make sure you get copies of everything.
Thank you so much for your advice. Just consulted with neurosurgeon who suggested surgery is the first line of treatment for a non-functioning pituitary adenoma. We now go back to SKILLS. Its getting more complicated than I thought.
thank u so much. Sorry to hear about your power and hope everything is OK after hurricane. We have now been to a Endo who requested numerous blood tests at the correct times (8 to 12 hours) fasting and done first thing in the morning at 8 am. Results came through. Everything look Ok only Thyroid Antibodies being Anti - TG Antibody is 3 times higher than normal. The Anti - TP ANTIBODY - normal. It looks like it no longer a non secrettory pituitary adenoma. Geeting more confused.
It is possible to have concurrent issues - for instance, I had Hashimoto's thyroiditis (which is antibodies), PCOS and a prolactinoma AND Cushing's (as well as other stuff) all at the same time - so having thyroid antibodies off can really mean the thyroid is off as that is a thyroid test. TSH is a pituitary test and if you told me that was super high well that can be a rare TSH secreting tumor - but I have not heard of (but then again I am not a doc) of a specific pit tumor that makes thyroid antibodies go nuts.
So, he could have a concurrent thyroid issue - it does happen. Both will have to be treated - IMHO pituitary first given the size... and after pituitary surgery most people need thyroid replacement anyway.
It is confusing. Keep us posted. We are having a snow storm now so if the power goes again - it may be another delay.
Hi, hope your hurricance is now over and all is well. My husband has seen a endo and after numerous blood tests, it has now been confirmed that he has a non functioning pituitary macroadenoma. Surgery is the first line of treatment. My husband's tumor is 22mm. Is this a big tumor for the neuro surgeon to remove in one piece? Very worried.
It won't be removed in one piece... even my smaller 5-6mm tumor was removed in pieces. They go in with round curettes and scrape it off the pituitary - all while avoiding the carotids and optic chasm. There are some doctors that are now perfecting the technique to remove whole - in other words, tease it off and then pull it off in one piece (there are some papers on outcome of whole removal vs pieces) so you can look at surgeons that do that. They are looking at that in terms of recurrence rates.
Part of the tumor is in an area where it is considered inoperable - it is full of blood vessels and nerves. He will likely require radiation on that part so the tumor just does not come right back.
As long as he is in the hands of a truly competent surgeon - the doc should be able to debulk a lot of the tumor, then radiation will have to take care of the rest of it. Again, research type of radiation and go for what is best, not always for what the hospital has.
Thank you. Will let you know. We managed to get hold of a professor who is the head of neuro in a academic hospital and also teaches at the university. Hope he does a good job. Thanks once again for all your advice.
Don't hope - ask questions.
If not, travel.
I don't like to say this - but I have met people blinded by bad surgeons - others that the doc was inexperienced and just removed the entire pituitary (it was easier, I guess?) rendering the person panhypopit immediately - both causing radical changes to their life in hours.
So ask about how many surgeries they have done and experience with macro-adenomas. Ask about the risk to his optic nerve and how the anatomy of the tumor will increase the risk of the surgery and what he does to mitigate risk. The size does increase the risk - so skill is at play here. Ask about how the surgery is done and ask the doctor to show you the tumor on the MRI and explain things to YOUR satisfaction in your language so you are comfortable. Will he be in ICU for a day after surgery or straight into a regular room? Ask about CSF leaks, and post op infections as well - they are minor complications - but can happen. Also ask about contact after surgery.
I hope you have a good endo as well to manage the post op testing and medications. He will need a lot at first. It will then taper to regular monitoring. I felt like a pincushion for a while.
Consulted with neuro surgeon who informed me that he has done hundreds of these ops. He has got a very high success rate in debulking the tumor. In my husband's case as the tumor is 22mm and depending where the tumor is, he informed us he will remove at least 90%.
Hi there. When we saw the neuro prior to surgery, he informed us that he was also concerned that there was some asymmetry between the right and left cavernous sinuses with the left cavernous sinus being larger than the right. He can only advise when he goes in to remove the pituitary tumor. What do you think.
I can only tell you that imaging only goes so far. So when the surgeon goes in there, things will be clearer - hence my point about you want lots of skill behind those hands.
The surgeon will not be operating in the cavernous sinus though - that area is inoperable. But the surgeon should be able to tell more about how the tumor is situated and what it is pushing on, growing in what location, firmness or gooeyness of tumor (those are medical terms... ok not) etc.
It is a good idea to get a copy of the pathology after the surgery. The surgeon typically talks to you right after the surgery too. Mine came out during but my hubster was sleeping LOL...
Oh things they don't tell you - they put you in a halo device to stabilize your head for the surgery. I had no pain from the surgery - but the screw holes drove me nuts for a few days- so have on hand some good antibiotic cream (or ointment - it is greasy though) to clear that up quickly. Lip balm is a must. Slip on shoes (you cannot bend over for a while). Put things he will need above waist high so he can reach them. The surgeon will have a preference of no saline allowed or allowed - and a humidifier may help breathing. No straws. Depending on techniques, he may need to sleep elevated on pillows for a while (depends on packing or not) I took a no packing surgeon. Surgical recovery usually only takes a few weeks - hormonal takes a lot longer.
Thank you. What screw holes are u talking about? They informed us that surgery will be performed through the nose and 2 small cuts will be made by youils and that the nose will be packed for at least 48 hours.
They put a frame around the head to stabilize the head during surgery. The head has to be held stable as well as up. In order to attach it to the head they attach it with three or four screws. I was not told before surgery either. But somehow they have to stabilize the head.
Thanks for the advice. Like you say, the drs dont tell you. Under what circumstances can a neuro remove the pit gland. Just so worried. I did emphasise on quite a few occasions for him to try his best and save the pit gland. Tks.
A good neuro-surgeon can - it really now is up to the anatomy of the tumor and how firmly it is wrapped around things. Most skilled surgeons do their best to save as much of the pituitary as possible.
I know one lady who had a child with a not so large tumor and found a local surgeon who offered to do the surgery for free. She did not ask any questions and I begged her to ask about experience and go for a skilled surgeon instead of just local. The doc removed the entire pituitary of a kid who had not even reached puberty. Now the kid is stuck in a life of having to replace all hormones to even grow, go through puberty - maybe have kids or whatever - expensive and medications for the rest of his life for a *free* surgery. I only know of one surgeon around that will remove the pit after aggressive tumors after multiple surgeries as a last resort- it just should not be done normally. I don't even think they really know all the hormones secreted.
Excellent! Now there is surgical healing and hormonal healing. He should be on some replacement hormones for a short time to heal. Testing and then they should see if he can come off - which is not fun.
Just make sure he takes it easy. With no visible scar, he may think all is ok, but he did have a major surgery. Any weird changes like to thirst or peeing, pain, or feeling oddly - call the doc.
Just trying to help. You were really so helpful every step of the way for my husband. Once again, thank you so much. God Bless you. I know that a few years ago he had surgery when they removed the tumor and now it has grown again to 25mm. It is benign. The problem is his getting headaches and seizures. The doctors refuse to do surgery and instead are treating him with medication but I still have to find out what meds his taking.
It is roughly a couple of weeks since surgery? He should be improving, not going backwards. I would contact his doctor and checked or talk and maybe to get so hormone testing to see where he is at just to make sure all is ok. At this time I was sleeping better, not worse. The surgical site should be healing up and closing and he should be more comfortable, not less.
Don't wait - call. There can be sodium abnormalities and other uncommon post-op issues that happen so it is better to be on top of them rather to let them get out of control.
He should only be getting better so changes should be looked at. It can even be an infection (we can be immuno-compromised - I had an infection without a fever, for instance). I would so much rather be safe than sorry.
Hi I found this posting after feeling so frustrated with the side effects of dostinex , so usual story found a tumour in 2007 numbers where around 1500 had breast leakage no periods had a MRI scan it was only tiny around .8mm tried dostinex hated it ,went back to E/ doc he said well there's not much I can do ,so I decide to go off meds and live happily ever after .Well 2012 around 3 months ago started to get headaches could feel some thing behind eye yes tumour has grown its now large and on nerves eye sight is ok . So went to a new E/ doctor she tried dostinex again ,forgot numbers where now 10,000 so after one month it came down to 7000 she said this was still to high so we double meds the side effects are horrible not coping ,I was a athlete but not handling the training the dizziness ,mood swings etc etc . But I was worried so I tried to stay on it , 6 weeks later down to 4000. Then next blood test numbers are on the rise 4500 ,I have had enough off to the neurosurgeon on Friday cannot take dostinex anymore feel like crap for 7 days can't go to the toilet normally constipated all the time etc etc
But the more research I do on this tumour it's not a good thing to have I feel for all that are going through this .
I am in Australia they have just started a Class action on Dostinex from some of the side affects that where not stated 2 years ago ,so why would anyone want to take it .
They can do basics - blood count and electrolytes as if infection or sodium issue, that can show most items. Look up SIADH and just keep an eye out.
Startrek - there are class action suits on many meds as far as I know this one is related to heart issues, but they still can help many. There is another option - parlodel (bromocriptine) which is an older drug. In some people the side effects are severe and so surgery has to be considered. There are other meds out there and not sure if Australia has approved them (the US has not - they are available in the EU).
Surgery has its own risks so while it is a good option - it carries life long consequences - likely you will lose thyroid and maybe growth hormone. If you have a great great surgeon, hormone loss should be minimized but if your tumor is wildly wrapped, large or your surgeon inexperienced you can lose many more. So you will have to replace one of more some forever some temporary. Pituitary is forever - and you will always have to keep an eye on it. Check out the resources on the health pages.
So sorry I have high jacked a post ,I should look before posting my own . It's a interesting class action here for Dostinex it's for changed and abnormal behaviours for periods 1996 to 2010.
So surgery should be the last option ? Have a Prolactinoma tumour haven't had a period for 8 years :) breast leakage weight again even on a diet. Can get so cranky . Dose at the moment for Dostinex is 2x 500 mg I take on a Sunday night knowing Monday will be bad ,but now the side effects are getting worst very confused and dizzy very tired as well all week . As a athlete I have had to cut my training down not coping . As I stated before my levels have started to rise on meds my E/ doc is worried and has sent to a Neurosurgeon who specialises in Pituitary tumours. So unsure what to do now reading this forum and all the dramas everyone has had . I have just started a new dog walking business which I love,it's very is good at the moment not handing working with people . So if I was to have surgery would I be up and around in a couple of days could I exercise or am I kidding myself ?.
That is kinda strange as a basis for a suit - given that the tumors cause abnormal behaviors as well - depression, anxiety, bi-polar etc.
If you are still not well on the medication, you need another review and a better doctor - the point of the medication is to remove the symptoms and that is not happening. When is your last MRI and has the tumor grown?
You are kidding yourself. Surgical recovery takes a few weeks - hormonal can take a long time depending on hormones lost - at least thyroid and some are temporary some long term. Depends on surgical skill and anatomy of tumor.
If the LH and FSH were low too - for men (I am not sure the levels for men - that I don't usually see the ranges for, sorry!) that could impact the testosterone. Low T all of a sudden could certainly impact mood - as most any hormonal change could do. I hope that they identify the changes and start to bring his levels back towards a normal.
Also, if he is on replacement hydrocortisone - sometimes higher levels of cortisol can suppress T - so it may happen that off it, it may go back to normal. Not knowing what he is on, dosages etc - hard to say. Hormones are so dang variable - at least how that feels to a patient!
When we consulted with Neuro, he informed us that he removed the entire pit tumor as well as the cells. Did hormones blodd tests. All blood tests taken for hormones including LH and FSH. Everything normal, except for very very low Testotrene. He therefore requires no medication for any of the the other hormones, except for low T. Thank God. My husband is also battling to sleep. Will he get back to normal. Tks.
Normally TSH would be abnormally low - like mine is .0006 (range is .3 to 3) just from the surgery - that is typical. After surgery one also typically gets hydrocortisone to support the cortisol production (actually to replace it temporarily) as the pituitary is a bit unhappy to be messed with during the surgery - so a loss of a hormone can be temporary at this point. If the pituitary hormone is normal though and the gland hormone is low - then the source is probably the gland - so they should look there.
I did look it up in medical papers - low T can cause insomnia - so when they treat it, that can resolve.
Hi Rumpled hope you having a good day I watch with interest how you try and help everyone on the forum .
Going back to the class action it's certain behaviours eg ,compulsive gambling,eating ,hyper sexuality or punding . I presume that between 1996 and 2010 these behaviours where not stated in the side effects that come with Dostinex .
I hate taking Dostinex with a passion ,went to see neurosurgeon on Friday my tumour is around 3cm by 2cm so he told me which I was very surprise at that radiotherapy would be the preferred way to go if it had shrunk a bit ( need new MRI great more money to spend )by doing that I would have a more positive out come that it wouldn't return . He tells me my pituitary gland has been taken over by the tumour so either way I don't think it will be possible to save it . If it hasn't shrunk he suggested maybe surgery then radiotherapy . I told the him about the effects Dostinex was having on me and I said I am not taking it a anymore he said that was a very bad move to just stop he said there was another medication I could take but it was very hard to get but didn't said the name either . Not much will happen till mid Jan waiting to get in for MRI . I would really appreciate your advice because I like the idea of not having surgery after reading about the leakage etc but I thought radiotherapy was a last option and should be not be used .
Dang, I thought that was another drug... some of those side effects are rather strange!
I took bromo - I felt like I was run over by a truck so I agree.
As for radiotherapy... my layman opinion is that I would do some research and in my thoughts, I see that as a LAST option in most cases (certainly NOT all) due to it taking a long time to work, side effects, and all... it may have to happen after surgery if a tumor is so invasive or in places that are inoperable.
Whoa - by save *it* does he mean he cannot save your pituitary? That is extremely strange. Removal of the pituitary is not normal. I only know a few (actually one) surgeon that will do it on purpose. I know of lousy surgeons that will do it though. I would get another opinion - I would not want that surgeon.
Hi hope u keeping well. My husband is improving slightly with regard to feeling down but this because of his low testotorene. Wanted to ask you if it is normal for him to have numbness in his toes and when he moves it, the numbness goes away. He also perspires intermittently. He still cannot sleep and the doctor gave him sleeping pills for 1 month. He is also constipated but I also noticed he eats very little. Regards.
I have not heard of numbness in toes associated with surgery. The sweating can be since hormone issues can cause weird sweating. It can also mess up your intestines and appetite. After one of my surgeries I did not eat for a week I just did not have any appetite. I hope he can find the correct fiber supplement to help (I use an inulin based one) and once his testosterone is back to a normal range, he starts to feel better.
Hi, hope you enjoyed your Christmas and New Year. It has now been 7 weeks for my husband's pit tumor op. His appetite is back to normal; not constipated but the only issue remains is that he is not sleeping at all. He has to take a sleeping pill everynight. How long will this take before his sleeping pattern will return to normal. Regards.
Do you have the option of seeing another endo? After all, he had a large pituitary tumor removed - he needs monitoring and there may be other hormones that need replacement. I know growth hormone helped me sleep and that is often lost in surgery. Especially soon after surgery - it can take a while to get stable. Some do - some don't. I was a less stable person. LOL.
I have a pituitary tumor (macro) and am presently seeing physicians and having several tests, (endo, MRI, eye exams, etc.) - it has been so enlightening and helpful reading your conversations with SHENAAZ, as I ready myself for this surgery. I live in Texas and am being treated in Austin area. I would like to know approximately how long it takes from the time of the surgery to when you actually feel well enough to carry on daily activities. (I am retired.) I realize everyone is different. I am a very positive person and active and if all goes well with me, would you say 3 weeks until I am up and around. I have spoken with my endocrinologist and realize she will be following me for several weeks to months after my surgery.
Jan 11, 2013 is the last post I see between you and Shenaaz. How is her husband doing now and is he back to a 'normal' life.
Hi this is Shenaaz. Thank God my husband is back to normal. Rumpled was extremely helpful. Getting the right surgeon i.e. skilled surgeon is of utmost importance. After the removal of the pit tumor, my husband was in ICU for 2 days and 1 day in highcare and when he went to the general ward on the 4th day, he was already feeling better. This is because the neuro surgeon removed the tumor in one piece and save the pit gland. Again I cannot stop thanking God. Wish you all the success.
I am very glad to hear your husband is doing well. I hope my surgery will be just as successful. I feel very confident about it and am a very strong person. I know that God will watch over me. Thank you for your response.
Yes it does. Is this the sister of your husband? In which case the doctor should be on the lookout, perhaps for MEN - multiple endocrine neoplasia.
Pheo (I just can't spell all that!!!) is an adrenal tumor and the main symptom is high uncontrolled blood pressure. It can cycle as well. The surgery would be similar to the one I had - except only one adrenal would be removed. She should find a surgeon that has done a great deal of laprascopic removal and few conversions to open as open surgeries are a huge (11" min) scar and a much much longer recovery and abdominal surgeries are not the most fun. I prefer the pituitary. I actually used a guy who did a lot of lab bands etc. as they do a lot of abdomnimal surgeries, cancer surgeries (mine did Sharon Osborne's cancer surgery!) and have the special equipment to make the surgery easy on the patient.
Hi thanks for your reply. Jee what havent you been through. May God keep you well. This is my brother's wife. She will be seeing the dr today to discuss. Should she check her pituaitary gland? Will keep you informed.
I was looking through your posts and the excellent responses you'd got. Of interest, how is your husband receiving testosterone replacement therapy? Is he having injections or rubbing a gel onto the skin daily? The gel method is preferred as it keeps a steady state, whereas the jabs cause ups and down in testosterone levels. Your husband is highly likely to be deficient in human growth hormone. It is one the the earliest hormones to fail. Inadequate levels cause significant medical and quality of life problems.
Internationally, there is a tendency, even amongst endocrinologists, dismiss low levels of testosterone in males. When I was 52 I was told my level was "normal". In fact it was the level of a 90 to 100 year old man. It was an early sign I had a pituitary tumour.
With regard to human growth hormone, many pituitary patients who require a lifetime treatment, just don't get the drug. It is taken by daily injection, rather like the insulin a diabetic takes. It can make a massive difference in health and quality of life. To test for deficiencies in human growth hormone and cortisol requires special tests which involve blood being taken over a period of hours.
I live in England. Here we have a charity called the Pituitary Foundation. It is an excellent source of factual information and it has a website.
Hi thanks for your info. I put my husband on herbal tablets (1 tab twice a day) which we get here in South Africa called Hormone Booster by Solal and its doing wonders to him. Recently took T test and its gone up from 90 to 230. What is also amazing all the other tests like cortisol etc., is all normal only the T was low. Even prolactin was normal. Dr did about 10 blood tests and all showed normal. Pse. also give me the webiste address for Pituitary Foundation. My husband has to do an MRI this month just to check for the tumor and the healing process. Regards.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.