Translab surgery completed October 27 - a success story...I wa

[Susang8]

I wanted to post my story to let people know that there can be positive outcomes.  I joined this site in July after my diagnosis of a 2.8cm left AN that was pressing on my brain stem and cerebellum.  After 3 consults with neurosurgeons and 1 with a Gamma Knife specialist, I made the decision to go ahead with Translab surgery (hearing loss wasn't a concern since my hearing in my left ear was functionally gone already).  I had the surgery on Monday, October 27 - it was 9 hours, they got it all, and I have absolutely no eye or facial issues at all.  I was up walking Tuesday morning at 8am with Physio.  But balance and dizziness have not been a problem.  Later Tuesday I did 2 flights of stairs unassisted ( with Physio guy watching) and then passed a series of balance tests administered by Physio and passed them all easily.  Aside from nausea immediately after waking from surgery, it hasn't been a problem.  I stayed in ICU after surgery for monitoring until my discharge from hospital on Wednesday morning and have been doing absolutely fine. My most sincere thanks to my surgeons - Dr John Rutka (Otolaryngologist) and Dr Michael Tymianski (Neurosurgeon) at Toronto Western and to the wonderful Canadian Health Care system. And my personal thanks to the wonderful people on this site who supported me on this journey. 

[ANGuy]

Thanks for passing along your great outcomes!

Did they give you something for the nausea and did it work?  one of my concerns about surgery is that I will be vomiting afterward and causing CSF leaks etc.  It might be a foolish concern, I don't know, I'm just wondering how that part of recovery is.

The single biggest problem with my symptoms is the dis-equilibrium caused vomiting from my AN.  It was absolutely terrible, and I'm not one too complain.  But dry heaving violently over and over again for several hours until the meds kicked in was really bad.  Now I have Zophran which is a miracle.  It turns off the vomiting instantly.  I just hope that it will always work that well for me.

Again, congratulations on your great outcome and thank you for posting it for us pre-treatment folks to read.

[joyce04]

Thanks so much..this is great information for those of use trying to decide which procedure to go with...

[Cheryl R]

How much nausea you may have immediately post surgery can vary.     I had some nausea for a short time and only vomited a small amount.     They will go to great length to keep you from vomiting a great deal to avoid strain on the brain.       The nurses and drs try to do the best they can to keep you comfortable.         it is ok to tell your dr or a nurse what you are worried about.    They have heard it all before.    Having you be less nervous pre op makes the whole surgery go easier.    We really all do vary in how our body responds to anesthesia and if you have compensated some with balance pre op.     Hang in there.  Do you have a surgery scheduled?
                            Cheryl R

[ANGuy]

No surgery on the near horizon.  I was diagnosed in June after having a series of symptoms that finally got me off my butt and into an ENT's office.  With 20/20 hindsight I see that I have been having very infrequent episodes dating back the last 8 years.  So, I've been WW for 8 years without even knowing it.  I'm at 1cm and my second MRI will be in Dec this year.

My plan A is to WW for 10 years.  One member of my team, a neurologist, thinks it's very doable.  His partner, a neurotologist, says I'll never make 10 years.  Sp, I'm just gathering info from others' experiences while I see how my AN behaves.

[Kathleen_Mc]

so glad to hear all went well!

[Susang8]

Hi ANguy...yes, I did have nausea and vomit a little immediately upon waking post-op but they dealt with it really quickly with Gravol IV I think...but they assured me pre-op that they had several meds for nausea and would not let it go on....the nausea may have been caused by the pain med they gave as I don't tolerate narcotic pain meds well.  After that, I declined all narcotic pain meds and had no more nausea/vomiting.  I was able to eat solid foods the next morning after surgery and have been totally fine - no pain, no dizziness, no balance problems, no facial/eye problems at all. WW was not an option for me due to size (2.8cm) and location (pressing on my brain stem and cerebellum).  Surgery was really my only option because of these factors so once I picked my surgeons,  I wanted a surgery date asap.  I am now on day 7 post-op, sleeping and eating well, and feeling really good.   I wish you well with Watch and Wait....

[ANGuy]

Thanks so much Susang8 for your specific answers.  Yeah, there are any number of things that can cause vomiting, from the meds to anesthesia to the vestibular issues and we would be exposed to them all, possibly at the same time.  I'm glad they have workable solutions for that as it was a big worry for me.

I may have issues with narcotics too.  I'm not sure.  The last time I took one was for some dental surgery, a percocet.  I took just one and I had the most horrible anxiety attack.  I KNEW something tragic was going to happen.  I was convinced family members were going to die or something equally terrible.  I was supposed to take one every 4 hours and i took just the one and was still freaking out 10 hours later.  It was like a nightmare, except I was awake.  I was told it was an allergic reaction to the opiate in the percocet.  I figured no problem, I'll just never take an opiate again as the dental pin wasn't that bad anyway.

Now I am facing the likelihood of having to take an opiate again for the likely surgery down the road.  I asked the surgeons and they said I shouldn't need pain meds in the first place and if I do, they can handle any anxiety issues with anxiety meds.  I was always under the impression that brain surgery caused surprisingly little pain as ironic as that sounds.  The surgeons I am dealing with confirm that.  Others' experience on this board both support and contradict that. 

You cleared up my vomit concerns and support the idea of pain not being much of an issue either.  Thanks again.

[Susang8]

One other piece of advice ANGuy...

I would strongly recommend that you get yourself in as good physical shape as possible prior to having your surgery - assuming that you have surgery at some point - and start doing some vestibular exercises to help your nonAN side compensate for balance issues.  I stepped up my workouts and added a number of balance exercises and I really believe that this helped significantly with my post-op recovery.

Good luck! 

[ANGuy]

One other piece of advice ANGuy...

I would strongly recommend that you get yourself in as good physical shape as possible prior to having your surgery - assuming that you have surgery at some point - and start doing some vestibular exercises to help your nonAN side compensate for balance issues.  I stepped up my workouts and added a number of balance exercises and I really believe that this helped significantly with my post-op recovery.

Good luck!

Will do!  I'm ahead of you on that.  While I never let myself go, I have been a bit lazy these past few years.  In the last few months, since being diagnosed, I have made it a point to get into a walking routine.  My balance is actually excellent.  I went hiking with my son the other day and we had to cross a stream using some logs that were already laid across it for that purpose.  Wobbly, wet, slippery logs and I walked right across them without falling in.  The PhD that did some fancy balance tests and all kinds of  hot and cold water rushing in my ears etc said my AN side was at 50% for balance function, whatever that means.

[Susang8]

That's great ANGuy...keep it up!  That balance testing sure is interesting, isn't it?  My AN side balance was down to less than 50% as well but I didn't have any balance issues either - clearly the other side of my brain was already compensating as yours likely is as well.  Hang in there and stay positive...in all honesty, my TransLab surgery has been pretty anti-climactic and I couldn't be happier.  Having surgeons who are very experienced in this type of surgery is a big factor in a successful outcome. 

[ANGuy]

Thanks for the encouragement.  I'm over the initial grief and anxiety that came after the diagnoses and am cool as a cucumber for now.  I expect that will change in the future if the time comes that they are putting the lines in my arms and wheeling me down the hallway.