pituitary tumor removed - post surgery slow recovery

[pioneerx]

Hi all,

I had an experience that I love to share and also some questions that i have no answer for.

About two months ago I had my nonfunctioning 13mm pituitary tumor removed by endoscopic surgery through nose. The surgery was OK except for a CSF leak that started during the surgery. A patch of fat was used to close the leak source. I had a spinal shunt for 72 hours to reduce CSF pressure and help the patch to stay.

The real problem appeared after one week when the CSF leak didnt stop as expected. I have CSF drops from my nose till now ! It stopped for only one week then started again unexpectedly. My neuro surgeon is actually surprised and he gave me one option, to wait one more week and if the leak goes on I will have another surgery to close this leak again :(

Do I have any other option? Is this continuous flow of CSF dangerous?
I am still recovering fro hormonal deficiency and I dont know what symptoms should I expect due to this leak?

Please if any one have answers help me and If anyone had the same experience please share

Thank you a lot

[rumpled]

The things patients can do are as follows...
- Lay flat. If you feel much better after laying flat, that is often a signal there is a leak (you already did this).
- Drink caffeinated drinks - if that makes you feel better, that can be a sign.
- Look at the drops - and see if they are clear? Clear fluid is more often CSF.

CSF has sugar in it, mucus does not, so if you know someone with a diabetes meter, they can use it to see if the fluid registers sugar (but that is an expensive option with the cost of those dang testing strips these days!). Another option that is cheap that some of my friends did is put some of the fluid on a coffee filter. If it pretty much stays put, it is mucus, but if the fluid spreads out and forms sort of a ring pattern, that can be CSF.

You are also so fresh out of surgery that likely this is sinus - even after packing, you are pretty packed up and still swollen from the surgery. Do try to use steam and if allowed, saline to help you out. No blowing, straws etc.

[rahul726]

I had my pituitary tumor surgery 3 days back. It was not painful but the only discomfort was the nasal packing. Post surgery sometimes I feel headache and heavyness in my head. I am still not sure about the CSF leak. I felt a couple of drops coming out of my nose today. The intensity of headache also doesn't change when I sit upright or lie down. What is the the best way to rule out the possibility of CSF leak

[rumpled]

You can write to any one of us - it may be harder to try to get a response to someone who has not been around for a couple of years. Starting a new thread and discussing your own story is best... (we cannot for some reason close old threads!) but a couple of us active people, myself included have had the surgery.
What type of tumor and what size? Do you have a really experienced surgeon? That is a probably the most important factor in outcome.

[Archie2010]

Hi ,
I am not even sure if you still even have this email address since it is now august 2012 ....but........ i had a pit tumor removed as well and have had some symtoms and am terrified. i need someone to talk too.

[rumpled]

I felt great after mine. It can really depend on the surgeon - packing or none, and what happens. I had very little pain - I think I had a tylenol. Mostly they keep an eye for hormone issues. The anesthesia is a big thing that always gets to me the most - I was tired.

Recovery can be deceptive - you don't look like you have had surgery so you may try to do things that you should not have. Avoid sneezing (open your mouth), straws, bending over (put stuff you need up before surgery, slip on shoes, slippers etc), and just keep an eye on your symptoms so you know if you are having sodium issues or other things that need attention.

Optic nerve issues may not be completely resolved by surgery - so you may need radiation as well. I hope you have a very very experienced surgeon (like over 500 lifetime, 1000 better) with a good staff and a good neuro-endo to keep watch on you after surgery. Once a pit patient, always one - so you have to keep watch forever.

[meetmom]

Can anyone tell me how they felt after Putitary Tumor surgery? I am having surgery next week due to loss of vision. Tumor is pressing against optic nerve.  Just a little a nervous don't know what to expect in recovery, whats the pain level?

[rumpled]

TD - yes, dynamic will show pituitary tumors better. They can detect the tumors by the uptake of contrast.

22Many - Yes - I know a few of us, even one who I jokingly call my tumor twin. Mine/ours were removed at the same time and er, they said we did not have the second kind so they had to eat crow at pathology as we had the symptoms, but they said it was not possible.

I personally find it weird that you are not given baseline tests - to know you are getting better vs worse and know what you are dealing with, and you need an endo anyway after surgery.

As for the zipper - nice idea! Pitzip! I think you should patent it. Oh and I know a few who have had three times.

[2time2many]

rumpled, so it is possible to have 2 different type of pit tumors???? I am going for surgery on the  17th and the neurosurgeon did not order any blood tests to figure out the type of the tumor saying it would not change. (The first time it was non functioning, and my initial blood showed not too high prolactin) This time around I am very moody, anxious, that was not there the first time. So I am suspicious it might be a diff type.
And a question.. will this thing keep coming back? I am hoping the 2nd time is the last time , should I order a zipper up my nose :)  I certainly don't want to go around the 3rd time....

[testdeprived]

dynamic protocol? is that why my mri with/without contrast barely showed my 2mm tumorz???

if i  get dynamic protocol will it show better?

[rumpled]

FYI - a neurologist does not have a clue how to treat a pituitary or hormonal issue, so likely you will leave that appointment very frustrated. You may find a rare one that is clued in, but I don't know any.

However, he may order the MRI - hopefully the place will do it correctly (pit MRIs have to be done right to get some of the smaller lesions to show up - it is called dynamic protocol - so when you make the appt - ask about it).

I actually had two pit tumors - prolactinoma and Cushing's, so I was a bit er, complicated and due to that, of course, they could not diagnose me for forever as well, cripes, they figure  you can't have one freaking pit tumor let alone two different kinds. I know someone else just like me in Ohio - and another in NJ - so I am not the only one, but the docs are slow to catch on. As for mis-diagnosed - yes, no, yes! Stuff like PCOS, fibromyalgia, migraines, etc - see, I really had that stuff - but the underlying pit issue kept the treatments from working - so until the pit was treated, nothing helped. But they treated me symptomatically, and none of it worked. I was also a mental mess. Emotional etc. My tumor twin was bipolar!

Get to an endo - neuro-endo.

[chelle000]

thanks rumpled,  Its great to get support.  
I have neuro appt a wk on monday, hoping that i get a good one, and that i get some answers.  Im half expecting to get told its migraines and be referred to their headache clinic.  I do truly beleive thers more going on, i just dont feel myself anymore.  I wish i could let my family know the extent of what i feel, but they are all under stress themselves with other stuff i dont want to burden then with all this too.  Dont get me wrong they have been great, my mum has me staying with her at the moment til i get neuro appt.  Im sure she thinks theres something wrong, which is making me more reluctant to tell her ALL that is going on.  
Im not on any other med other than painkillers, so i dont see any other cause for the lactation to be honest.  Some days i feel ok, others are like im not here at all.  What were your main symptoms if you dont mind me asking, and how did you finally get to the diagnosis, did it take a long time, did you have any mis-diagnosis beforehand??  Sorry for so many questions, but id like to get as much info before appt.

Thanks so much xx xx xx

[rumpled]

My prolactin was normal - and I still had a small prolactinoma. That being said, it could still be thyroid or medications, or other medical issues going on. They should be running more bloodwork - and concentrating on the hormones - and do a pituitary MRI.

You are not intruding.

Also - find a neuro-optho - not just an optician. And a great endo.

[chelle000]

hi all, i have a post here somewhere on yhe site, but reading this 1 was very interesting indeed.  I feel like a moaner now,lol.

I am sorry to intrude, but was wondering as you have been through the initial stages if you could help me plz???

I am due a neurology appt in 2 weeks after suffering really bad headaches vision probs, and lactation (not preg).  My prolactin level was ok and optician cant find any preassure on optic nerve (also seeing opthamologist in 2 wks)

my balance is slightly off, and memory is getting a bit less,lol  Im only 30,
doc not happy with me, and wanted me admitted to hospital, but with 3 young kids, that aint an option at the moment

Can anyone relate to this, i would be very grateful for your view. thanks for reading.  xx xx

[rumpled]

Incidentaloma is said to be found "incidentally"  such when they are doing an MRI for something else - like a headache. Or when they cannot tie the adenoma to the tests and thus assign it to a proper name.

I agree that they really do have symptoms, and that the docs are really idiots about pit tumors because the symptoms range from in your face to subtle - but they are there.

"Non-functioning" do have symptoms. They also tend to be larger and more aggressive growers.

[testdeprived]

i believe that all tumors are symptomatic. i just thought that an ;incedentoloma'' and a ''non functioning tumor'' were both synonymous with one another.

both are ''said to be non symptomatic''

like i thought my ''non symptomatic tumor'' was called non functioning?

[rumpled]

TD - Nope...

It causes physical symptoms - usually headaches and visual ones but then when the tumor gets large, it can press on the pit and cause hormonal issues not from the tumor per se, but from the pressure on the tumor.

Pressure can also happen from smaller tumors - hence why a non-secreting tumor can cause hormonal issues. Scar tissue and the like can do it.

Also, depending on whether the tumor grows up or down depends on what happens. Up towards the optic nerves causes the eyesight to be effected, down towards the nerves causes more headaches. There is not a lot of space there, hence why even a tumor of 1cm (10mm) is significant.

[testdeprived]

i thought nonfunctioning mesnt it was ''not causing symptoms''

[horselip]

Hi pioneerx-
I had a very similar situation to yours. A CSF leak after pituitary surgery. Mine was very small and I went two years before we figured out that this was what was happening as caffeine and any type of swelling (I have allergies) would make it go away. It was when I got meningitis that the puzzle was finally put together. I had to do a special type of nuclear scan to confirmed that I did in fact have a leak. They put these cottony pleglets into my upper sinuses (ouch) and then injected a special dye into my spine. Ended up that the scan did not show it. But some of the dye was on the pledglets.

LSS I had the leak repaired by an ENT. He went through the nose to the skull base and patched it with some sort of bone-like stuff. We had a pituitary surgeon there just in case they needed to go into the sella region to make the repair.

[rumpled]

Pred is actually, IMHO, the worst form of corticosteroid replacement you could be on - oh you could be on dex. What is he trying to do to you? Make you never sleep? *sigh*

The one most like the body makes is hydrocortisone (not the cream, but the pills) or cortef in brand name. And you probably do need other hormones - after a pit wack, the thyroid is going to go way down if not disappear, and so you need that, and you may start to need other ones. Waiting is er, weird. I got testing right after my surgery by my endo.  You will need to be followed by an endo forever now - so I would get to one sooner rather than later.

The most common infection is meningitis with a CSF leak - that is what they worry about -  you basically have a pathway to the brain open. I am surprised that they are not making you lay flat and drink coffee!

Ever thought about consulting another doc? He should be able to figure out the leaks.

I had a friend that had psuedotumor cerebri - she got /gets lots of leaks from her anatomy and the surgery made it worse. It would not hurt to get opinions. I had an infection after my surgery and had to have a second surgery - I agree, not the best thing, but sometimes you have to do it.

[testdeprived]

oh well, im glad they removed it for you, and i hope you recover!

[pioneerx]

Actually all doctors I visited insisted to remove it since its 13 mm .. which means its macroadenoma .. big enough to cause trouble to surroundings

[pioneerx]

Thank you rumpled for your helpful info

infection sounds big .. could I do anything to avoid it till the leak closes or another surgery is made?
Could the leak also cause confusion and imbalance? or this is due to hormones deficiency?

I dont take any replacement except for 2.5mg cortison (prednisone), my neuro surgeon thinks we should solve the leak problem first then I will follow up hormones with another doctor

Currently Im afraid if I go for another surgery to close the leak it may open up again since there is no apparent reason caused it to open again after the first surgery

[rumpled]

You don't want a leak of CSF - it is a pathway to the brain and thus, well, infection. So it is not a good thing. Symptoms are generally what you have, the leak and a often a nasty headache.

Does laying flat or drinking caffeine help? There are meds out there, but they must have determined that they are going to have to do surgical intervention. I would  however, try to lay flat as much as I could and see if it will close up on its own. Drink a lot of caffeine too - er, that should help you lay flat. Not. But honestly, for some reason, caffeine does help close up leaks.

I have a friend that had one that leaked a lot - not sure if it is anatomy or what, but some people just seem to do this.

TD - "non-functioning" only means it is not secreting hormones, but it is 13mm - large enough that is could interfere with eyes, sit on a carotid, etc. so anything that size is routinely removed by competent doctors.

[testdeprived]

you found a doctor to remove a 'nonfunctioning'' tumor? god bless.