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Recovering from pit tumor surgery need tips/tricks please
Hi I'm a 35 year old male recovering from removal of a 2.3cm pituitary adenoma which was wrapped around my carotid artery. They went up the nose to remove it (no packing) and used a fibrin fat graft at University of Michigan Hospital (Dr. Sullivan is an excellent surgeon). Recent biopsy staining results of the actual tissue have suggested it was producing both Prolactin (levels around 300) and Gh (positive Gh supression test) also had a slightly higher rate of cell division than usual. (Should I be concerned about that they didn't really elaborate on it with me...?)
Anyway the good news is the surgeon thinks he got all of it on follow-up MRI. There was some increased bleeding during the procedure at which point they did an emergency angiogram in my groin which was negative for any carotid bleeding or damage. I spent 2 days in the neuro ICU then was discharged home. Right now I am post-op day 7. I have no headache (gone on post-op day 4) or clear drainage (only occasional solid bloody drainage after waking up). Some scabs falling out now as well. I have been having issues with constipation which is problematic because they told me to avoid straining which I found impossible. I have slightly low sodium as of my lab results yesterday. I regained my FULL sense of taste and smell post-op day 3 but now (suddenly) and of great concern to me everything tastes like a strong metal or chemical cleaner. Again I have no clear drainage even when I lean forward and no headache. They did put me on Augmentin...
Any tips tricks advice answers greatly appreciated. I can answer peoples questions as well! :)
Anyway the good news is the surgeon thinks he got all of it on follow-up MRI. There was some increased bleeding during the procedure at which point they did an emergency angiogram in my groin which was negative for any carotid bleeding or damage. I spent 2 days in the neuro ICU then was discharged home. Right now I am post-op day 7. I have no headache (gone on post-op day 4) or clear drainage (only occasional solid bloody drainage after waking up). Some scabs falling out now as well. I have been having issues with constipation which is problematic because they told me to avoid straining which I found impossible. I have slightly low sodium as of my lab results yesterday. I regained my FULL sense of taste and smell post-op day 3 but now (suddenly) and of great concern to me everything tastes like a strong metal or chemical cleaner. Again I have no clear drainage even when I lean forward and no headache. They did put me on Augmentin...
Any tips tricks advice answers greatly appreciated. I can answer peoples questions as well! :)
I saw my period at the age of 12, however by the age of 14 it dissappeard. By the age of 15 I went to the doctor because I started lactating and suffering with severe headaches. Prolactin test was done and it was pretty high. Doctor sent me for an mri which revealed I had a microadenoma. I was put on bromocriptine and stayed on it for 5 yrs. There was no improvement. Was still lactating, severe headaches and no period. Prolactin levels we still very high. Doctor then decided to put me on cabergoline. Stayed on this for 10 yrs and still no change. My prolactin levels are still extremely high, still lactafing, sever headaches continue and still no period, also suffering with infertility at this age of 30. I have had enough. Being on meds for 15 yrs and no improvement. In fact headaches are more frequent and more severe. A week ago I went for a second opinion. Did an mri which revealed the tumor has doubled in size. Now is a macroadenoma (1.5cm). Doctor told me after being on meds for 15 yrs that this tumor is growing. Meds not working so I need to have surgery. I am afraid of having this surgery. Don't know what to expect. Any advice plz
Perhaps these 'answers' are too late as now one month has passed. I am about 7 weeks post-op. I also had the metallic taste which has pretty much gone away. I had drainage of some sort for about one month but since I have allergies and it was not a constant drip medical professionals were not concerned. Of more concern to me is that I have bouts of sadness and crying that no one really has much to say about.
I am realizing now that I was not told much about what would happen after surgery and the future is uncertain. The only thing that was mentioned was the chance of a type of diabetes--NOTHING else. It turned out that low sodium was a risk and I was not told about this. I am very concerned about the side effects of hydrocortisone and NOBODY mentions alternatives.
I am realizing now that I was not told much about what would happen after surgery and the future is uncertain. The only thing that was mentioned was the chance of a type of diabetes--NOTHING else. It turned out that low sodium was a risk and I was not told about this. I am very concerned about the side effects of hydrocortisone and NOBODY mentions alternatives.
Quick update. I am one month post-op now. I got my first round of hormone testing and all of my hormones have normalized much to everyone's relief. My senses of taste and smell have begun to recover especially since recieving my first post-op debridement from the ENT who says things look great now. I've also started Nelimed saline nasal flushes which have been a life saver in that regard. No more rotten flesh smell and taste or at least it is very seldom. I do still have lingering random patches of muscle cramps and muscle pain after the surgery despite having a normal thyroid level and normal CPK drawn. Something I did not have before. I guess it's just due to the massive crash in growth hormone and rise in testosterone levels. I also have a great deal of eye and skin dryness again attributed to changing hormone levels. My facial appearance has changed and I seem to be thinning down going from 203 down to 190 since the surgery.
Well just in case anyone ever reads this doing research into what someone's post-op course was like I'll summarize my post-op course here. Who knows maybe it will help someone like me trying to read about people's experiences after surgery. This was the first major surgery I ever had. Didn't even have a primary care doctor before being diagnosed in June (four months ago) seems like 4 years ago now with all the anxiety and doctors appointments.
Post-op Day 1: Severe head and neck pain. They had to push morphine several times to get my pain under control while admitted in the Neuro ICU. Spent most of the day taking meds, catching sleep interrupted frequently by nurses and residents doing neuro checks to make sure I was OK. Too much pain to eat anything. They kept encouraging me to drink fluids constantly. I was catheterized (first time in my life) so constantly producing urine. Could barely breathe out my nose had to mouth breathe. Constantly leaking bloody mucus out of my nose had to control it with kleenex.
Day 2: Still headache, neck pain, back pain. Pain meds started helping better. Catheter was pulled. Went into urinary retention retained around 1200ml of urine so I had to be straight cath'd to get the urine out. Twice... lots of fun. But that night apetite returned and I started urinating normally again. Nose opened up a bit but still a mouth breather. Still leaking bloody snot (not CSF just some serous bleeding). MRI came back negative for any residual tumor despite them having to abort the procedure early due to bleeding. Sodium level normalizing.
Day 3: Discharged home. Long drive around 4 hours which was suprisingly tolerable despite frequent restroom stops along the way. Pain was now bareable with just oral meds oxycodone. Taking cortef to make up for the cortisol they assumed would be low. Taking amoxcillin. At this point my taste and smell were suprisingly normal and I had normal apetite.
Day 4: Slept in my own bed still mouth breathing. Humidifier (clean it thoroughly use a filter) was a godsend to helping me sleep. Also use the saline nose spray every hour very helpful to opening my nose more. Making sure to not sneeze, blow my nose, or lift anything heavier than milk jug for 2 weeks. I noticed cortef was making me feel very bad after taking it the opposite of what was supposed to happen.
Day 5 and 6: Much of the same. Felt good enough to take a SHORT walk around the neighborhood in the sun no hills. Felt very good to do that but was left winded at the end rare for me but not suprising. I was constipated from day of surgery till today had first BM thanks to dulcolax.
Day 7: I talked my NP into ordering a cortisol level on me because cortef (physiologic dose) was making me feel so bad. So I stopped cortef this day to prep for test next day
Day 8: Cortisol level came back normal without using cortef so they took me off it. Continuing pain meds sleep meds antibiotic. On this night I suddenly started experiencing taste and smell disruption when it was normal just hors before. Everything taste rotten or "medical" very alarming development. Also started hacking up old blood clots dark black red clots from back of my throat.
Day 9: BMs have normalized. Still bad taste and smell. Still on antibiotics. No headaches. Developed right thigh tendinitis.
Day 10: Started doing Netipot flushes to try and get my taste back. They helped me breathe better through nose but no help with taste and smell.
(To be continued)
Post-op Day 1: Severe head and neck pain. They had to push morphine several times to get my pain under control while admitted in the Neuro ICU. Spent most of the day taking meds, catching sleep interrupted frequently by nurses and residents doing neuro checks to make sure I was OK. Too much pain to eat anything. They kept encouraging me to drink fluids constantly. I was catheterized (first time in my life) so constantly producing urine. Could barely breathe out my nose had to mouth breathe. Constantly leaking bloody mucus out of my nose had to control it with kleenex.
Day 2: Still headache, neck pain, back pain. Pain meds started helping better. Catheter was pulled. Went into urinary retention retained around 1200ml of urine so I had to be straight cath'd to get the urine out. Twice... lots of fun. But that night apetite returned and I started urinating normally again. Nose opened up a bit but still a mouth breather. Still leaking bloody snot (not CSF just some serous bleeding). MRI came back negative for any residual tumor despite them having to abort the procedure early due to bleeding. Sodium level normalizing.
Day 3: Discharged home. Long drive around 4 hours which was suprisingly tolerable despite frequent restroom stops along the way. Pain was now bareable with just oral meds oxycodone. Taking cortef to make up for the cortisol they assumed would be low. Taking amoxcillin. At this point my taste and smell were suprisingly normal and I had normal apetite.
Day 4: Slept in my own bed still mouth breathing. Humidifier (clean it thoroughly use a filter) was a godsend to helping me sleep. Also use the saline nose spray every hour very helpful to opening my nose more. Making sure to not sneeze, blow my nose, or lift anything heavier than milk jug for 2 weeks. I noticed cortef was making me feel very bad after taking it the opposite of what was supposed to happen.
Day 5 and 6: Much of the same. Felt good enough to take a SHORT walk around the neighborhood in the sun no hills. Felt very good to do that but was left winded at the end rare for me but not suprising. I was constipated from day of surgery till today had first BM thanks to dulcolax.
Day 7: I talked my NP into ordering a cortisol level on me because cortef (physiologic dose) was making me feel so bad. So I stopped cortef this day to prep for test next day
Day 8: Cortisol level came back normal without using cortef so they took me off it. Continuing pain meds sleep meds antibiotic. On this night I suddenly started experiencing taste and smell disruption when it was normal just hors before. Everything taste rotten or "medical" very alarming development. Also started hacking up old blood clots dark black red clots from back of my throat.
Day 9: BMs have normalized. Still bad taste and smell. Still on antibiotics. No headaches. Developed right thigh tendinitis.
Day 10: Started doing Netipot flushes to try and get my taste back. They helped me breathe better through nose but no help with taste and smell.
(To be continued)
Thank you for the reply and advice!
I got a few blood tests done and sodium has returned to normal. I've been behaving in terms of bending lifting no blowing nose etc. Taste is around 50% of what it use to be but better than a week ago when everything taste "rotten". I spit up 20 or so blood clot looking things and it seems to get better day by day. They told me I had a lot of bleeding 700ml during the procedure almost needed a transfusion so I guess every sinus is filled with blood now.
The thing that worries me most now is I started having severe neck pain in the muscles of the right side of my neck 5 days ago. Maybe this is just residual muscle cramping from the vice they put my head into? ... but hasn't been this bad since day 1 post-op then suddenly day 14 post-op it restarted after being gone awhile and now my eyes are dry all the time and getting right thigh cramps and constant pain. Maybe hormone flux? Maybe due to the emergency angio? I can't be sure... I'm not vomitting and have no rash or fever I've been watching for other meningitis signs but so far just the neck pain.
Again thank you for your replies!
I got a few blood tests done and sodium has returned to normal. I've been behaving in terms of bending lifting no blowing nose etc. Taste is around 50% of what it use to be but better than a week ago when everything taste "rotten". I spit up 20 or so blood clot looking things and it seems to get better day by day. They told me I had a lot of bleeding 700ml during the procedure almost needed a transfusion so I guess every sinus is filled with blood now.
The thing that worries me most now is I started having severe neck pain in the muscles of the right side of my neck 5 days ago. Maybe this is just residual muscle cramping from the vice they put my head into? ... but hasn't been this bad since day 1 post-op then suddenly day 14 post-op it restarted after being gone awhile and now my eyes are dry all the time and getting right thigh cramps and constant pain. Maybe hormone flux? Maybe due to the emergency angio? I can't be sure... I'm not vomitting and have no rash or fever I've been watching for other meningitis signs but so far just the neck pain.
Again thank you for your replies!
It is pretty common to have taste issues and even to get a sinus infection after surgery.
Congrats on being on the other side! Make sure you follow instructions like no straws, bending over and rest rest rest. It can be difficult as it can look like no surgery happened but you had a major one.
The sodium drop can lead to siadh so that has to be watched carefully.
Sorry for delay, posts have not been all that active here...
Congrats on being on the other side! Make sure you follow instructions like no straws, bending over and rest rest rest. It can be difficult as it can look like no surgery happened but you had a major one.
The sodium drop can lead to siadh so that has to be watched carefully.
Sorry for delay, posts have not been all that active here...
2 Comments
You likely have an infection. See an ENT .
I'm post-op day 20 now. Taste has returned to mostly normal no further blood clots in my throat. I do still have severe right side neck pain though. Worried it's a complication of the emergency angio (which was negative) that they had to do on me because of the abnormally increased bleeding during the procedure.
New developments today unfortunately. Had to get up to be 5 times last night. I thought I was out of the woods in terms of Diabetes Insipitus... is it possible to develop it 8 days post-op? Also my sense of taste and smell has hit the rocks... Everything I eat, drink, smell tastes has a disgusting rotten metallic/chemical taste or odor to it. I don't understand why that would suddenly cahnge after 6 days while being on antibiotics...
1 Comments
Well post-op Day 10 has arrived. Only very mild headaches now. Urination and GI tract have returned to normal. Unfortunately I still have a very disturbed sense of taste. Everything still tastes and smells like rotting flesh or metal. Hoping it comes back eventually.
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