Avatar universal

Pituitary gland macroadenoma removal - state 1 year post-operation

Hello good people!

I'm writing on behalf of my mother, who last September had to undergo an tough operation involving the removal of a macroadenoma of the pituitary gland. While the operation was successful, it left her with a hemiparesis on the LEFT side. She was also in a coma for about two days after the intervention. The nasty bugger was apparently massive and had done some major damage to the pituitary gland and reached the hypothalamus, although damage done there was apparently very minor. The epicrisis mentioned about 90% of the tumor having been removed.

Post-operation, we've done several MRI scans since then, showing no residual mass in the location with no new signs of a tumor reappearing. We're constantly doing rehabilitation, so she is now able to walk (with our support, still losing balance when in open spaces) and perform various exercises with her hand! :) (still can't preform daily activities - long road ahead there!)

For medication - she is prescribed  Dehydrocortison (5mg tablets, 1 in the morning and 1/2 before bed) and Nootropil (1200mg, twice a day - contains Piracetam). For the first few months, she was also prescribed Citicoline, but has now stopped taking it. I'm not mentioning other minor minerals, vitamins and eating supplements, but can do if need be.

However, there are a few things worrying us as far as her current state goes, so I'd like to tell you about them here in the hope of some suggestions and opinions, in case there is something we should be worrying about...

1) Vision: The RIGHT (not left!) side of her face remains somewhat numb, and her right eye can barely move in all four directions. Opening and closing of the eyelid is fine. She says she feels her ride side as if being "extruded outwards". This leads to a weird vision resulting in difficulty of spacial awareness, especially in open spaces outside - leading to a lack of perfect balance. One night I tested her trigeminal nerve sensitivity (temple, cheek and lower edge of the mouth) - all three locations had low sensation, lowest towards the mouth. Maybe some nerves are still constricted? She was prescribed some glasses in accordance to her state, but are there any additional things we can do? We've been told to "wait" and that things will slowly get better...

2) Eating is very difficult. She went from eating pureed foods to regular, firmer foods, but she can't really chew properly - cheek, lips and tongue on the RIGHT side are still mostly numb, so managing food with her tongue inside her mouth is tricky. She only eats on the left side, but food tends to drip sometimes and after a few bites her entire mouth goes stiff. We were recommended injections of botulinum toxin in specific parts of the right side, because she has a hyperactive muscle which apparently needs to be relaxed. We had an "expert" perform the manipulation three months ago - there were no improvements... Currently, we are looking to contact another specialist in Slovenia for a second attempt, this time with different injection locations. Apart from botox, is there anything else that might relax her face and allow for easier eating? Medication suggestions are welcome, or even special types of exercises.

3) Walking has progressed a lot, but she still has a major issue when it comes to gait and stance due to her left ankle twisting. Very often, the ankle goes stiff and slowly twists inwards, not allowing her to step with her entire foot on the ground. We were told her gastrocnemius muscle is hyperactive and constrictions are leading to this unwanted twist of the ankle. Some days stepping is fine, others it's a nightmare and her entire gait/walking is outright wrong. We noticed that shock occasions, such as a car passing by close or having to cross a street immediately twist her ankle. We are performing electric stimulations, in addition to lots of massages, stretches and exercises. She is now squatting and has proper strength in the leg, but due to this ankle problem walking is very difficult... Are there any other methods we might apply to improve this? Apart from the gastrocnemius muscle bit, it seems her brain is still heavily susceptible to stress and the commands she is getting are forcing this constriction...

Lastly, I should mention that multiple blood tests in recent months showed increased levels of calcium and B12 in her bloodstream. We have an upcoming SPECT scan of here parathyroid glands in a few days, to see if a tumour might be causing this. We were told she should drink lots of water...

So, that's that. Sorry for the wall of text! I can provide additional information if needed, like more detailed breakdown of medication regimes, MRI scan reports and so on. Any suggestions are welcome - mainly for the mouth, as eating difficulties are currently the main factor for depression and whatnot... Thanks in advance! :)
0 Responses
Sort by: Helpful Oldest Newest
Have an Answer?

You are reading content posted in the Brain/Pituitary Tumors Community

Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.