My exerience

[Joy2u]

Hello everyone and thanks for being there.

I`m not an official AN sufferer but instead had an unknown cyst removed from my brain stem during 7 hours of surgery on May 8th of this year.
My consultants  treated IT and me as tho it was an acoustic neuroma as all my symtoms were the same.
As most of you , I lost my hearing on that side too.
And thankfully my cyst proved benign.

Since surgery I remain extremely unbalanced, tho my consultant  feels this will improve with time.
 
2 weeks after surgery I suffered facial palsy on that side, which righted itself after another week.

6 weeks later I had a cerebal leak and was set for a repair op,  but thankfully that repaired without intervention too.

Recently I caught a flu type virus which has sent my balance into orbit again and given me back the dreaded earache which my local doc is  currently treating.
On examination my earache showed  inflamation to the middle ear .......and no pain  at the op site!
Which I thought was good news! 
Local doc is pondering whether to send me back to the consultants  for a review, as my balance doesn`t improve tho.
In fairness this local doc usually treats bunions and stuff and brain surgery`s way out of his league.

My questions are........has anyone else caught a virus post op ? 

Did it sent you back to the starting gate?

Did it mess up your recovery ? 

Common sense tells me that a virus will track to my weak spots...especially as my weak spots haven`t healed properly yet from May surgery.......................but you know what its like?  A worry !

Any tips on recovering  balance would be appreciated ....thanx

Joy

[Jim Scott]

Hi, Joy:

I'm now 4 months post-op and no virus - but I would assume that catching a virus anywhere close to your surgery would cause recovery problems. 

Balance usually does return following AN-type brain surgery - but - you have to work at it, including exercises and practice.  Everyone heals differently, as this board will show.  I 'came back' from my surgery fairly rapidly with few problems but others have myriad problems for months and sometimes years on end following surgery for these 'benign' tumors that affect various important nerves around the brain.   Loss of equilibrium and fatigue are two of the most common complaints.

I would strongly suggest you consider consulting your neurosurgeon for the continuing balance problems as it would seem that your current Primary Physician is a bit uninformed on this kind of problem.  You may need PT for regaining your balance, something any surgeon with AN experience would know, and share with you.  You might want to ask your PP for a referral back to your neurosurgeon based on the balance problems you are still experiencing.  They should be showing at least a bit of improvement but the virus could be thwarting that.  I'm not a physician so this is simply my opinion - and worth about what you paid for it.   

I wish you well.   


Jim

[Gennysmom]

I had Translab 7/5, a CSF 7/19 fixed by lumbar drain.  On 9/16 I came down with one heck of a cold virus, sneezing, coughing, etc....making me really nervous because of the leak.  I'm just getting over it, and it was 2-3 times longer to do that than the other people that had it around me.  It didn't seem to do anything to delay my AN surgery recovery symptoms, just aggrivated them for a bit.  Balance is the same as it was before the cold, pretty good, but I still kind of list to one side sometimes.  My doc thinks it may always do this. 

[Joy2u]

Thank you Jim and Gennysmom for replying to my recent posting about a post op flu/cold  type virus.   


I know just what you mean Gennysmom,  by a cold type virus hanging around longer than everyone elses,  but considering the trauma our  brains  have been thro, I suppose it`s to be expected?
Cripes, I imagine you must`ve been  nervous after a CFL with all that sneezing?
I was definitley below parr for 2 yrs before being diagnosed and had no inkling as to what my problem was?
But even so, like you,  have that climb back to our usual health and a virus is the last thing we need!!!
   Hope you`re getting on much better now....good luck and good health!


Thank you also Jim, epsecially for your comments on the dreaded balance issue. 

All of which I`ve taken on board.

With some  post op  hiccups, I think that I  slacked a bit in pushing myself with excercises .  And have begun working at them  much harder. 
 I wish you well in your health and thank you very much in  pushing that point home to me. 
 
I suspect we`re all  out on a limb in our local communities , with barely anyone around us  really understanding our surgery and all. 
 So this forum is invaluable for this kind of information from a fellow who`s been there.   

I`m still battling a virus which has certainly tracked to my  weak spots from surgery.
 The good news is that my earache`s gone .  Sinus  problems now....grrrrrr!
But thats small fry ...after our surgery!

I live in a small town in the UK and just everyone`s going down with a virus that`s making them dizzy ....so don`t reckon my balance has a chance ...do you?
I`m just hoping it isn`t `bird flu? `   ( just joking)

Apart from all the above...........

Has anyone with an AN on their brain stem,  noticed that they had high BP before the op but which is  much lower now? 
I was always riduculously healthy with a normal BP ....but just before my diagnosis , my BP showed sky high.......(months before I had cause for concern!  )

 On researching,  I found that  problems with the brain stem causes high BP. 

Post op......mine`s back to normal without medication!   

It would be interesting to hear if anyone else has found this?

Thank you again ANA for allowing me to post, I`m not officially AN ..
.but with a rare benign tumour, that the surgeons and audiology are treating  as such,  now that  its more or less gone.

Joy from UK.

 95% removed,  4th May at Addenbrooks Unviversity Hospital, Cambridge.  England .