Calling all post-translab patients!

[acousticlady]

I would really appreciate input from those of you who have gone through translab surgery
   - What happened to your facial nerve immediately after the surgery, after 3 months, long-term?
   - What happened to your balance immediately after the surgery, after 3 months, long-term?
   - Did you experience headaches?  What about down the road?
   - Dry eye?
   - Tinnitus?
  - Any surprises or repercussions?

Did any of you have the surgery in the Boston area with Dr McKenna or Martuzza? 
Thank you so much.  I am so appreciative of any insights you can offer.

[Brewers7]

I never really had a problem with headaches and I did not have Tinnitus, but I did have just about every other complication imaginable.  I am told that my situation was EXTREMELY RARE. (Apparently I am part of the 5 - 10%.)  Most seem to be home in a couple of weeks without any major problems.  Someone recently posted that they were home in about a week.  Awesome.  When is your surgery?

[psmix]

I've had translab twice (the first one didn't get the whole tumor.) After the first surgery, I did have bad headaches for a couple of weeks, mostly first thing in the morning. They subsided pretty quickly though. I began elevating my head when I sleep and that helped some. No problems with the facial nerve after the first surgery, but I did have double vision and messed up taste buds for a week or so.  The deafness was like a cotton in the ear feeling, "white noise" a lot of the time, and my voice sounded really funny inside my head when I tried to sing - like a bad speaker. Balance was not too bad; I had probably lost most before the surgery anyway. I'm still a little unsteady in the dark, and bleachers or steps with no railing challenge me!

During the second surgery my facial nerve quit working. I woke up with almost complete paralysis on the tumor side (though I could close the eye a little bit.) The nerve is very slowly coming back. I'm almost 8 mos. post-op. I have a tiny little bit of movement, and some synkenesis developing. I've started to work with Jackie Diels to try to stay on top of this. I should get most of my facial function back to almost normal eventually. No bad headaches after the second surgery, other than surgery-related healing. I get some mild headaches sometimes, but Tylenol takes care of them. I have an eyelid weight and still use heavy ointment in my eye 24/7 since I don't have a spontaneous blink. That means I really only see out of one eye, but I'm pretty used to it. I'm pretty used to the deafness, too, and it doesn't bother me much. Cocktail parties can be tricky. I get tired. My stamina is about 90% of what it was before the surgery. Overall, though, I feel good and am doing all of my normal things!

There are so many different stories. I hope this helps. Good luck!
Pam

[schmidtkat]

Hi Acousticlady,
I had the translab. approach for my AN surgery on Sept. 2nd of this year by the doctors of the HEI in Los Angeles. What I can provide for responses is bases soley on my experience, and as you will read on this site...experiences vary.
Tumor Removal  -- My surgery went remarkably well. Dr. House and Dr. Schwartz performed the translab. and successfully removed 100% of my 3+ tumor.
Facial Nerve  --  No damage to the facial nerve. Came out of surgery able to move my face basically normal. On the scale of 1-6, with 1 being the best, they told me I was better than a 1.
Balance -- Since my balance nerve had already been effected I was told it would be an easier transition. Immediately after surgery I was very unsteady and probably even moreso...scared as I moved around. This improved greatly. I do still have some balance issues, particularly in the dark. However, I am only 6 weeks post-op, so am doing VERY well.
Headaches - I really did not experience headaches as one of my symptoms prior to surgery and have done well since. Initially after the surgery I had some headaches for the first 2-3 weeks. These were not horrible and were manageable with meds. The past 2-3 weeks I have had virtually none. If I push myself too much during the day I do end up with one. Again, these are very managable for me.
Dry eyes -- Yes, I do still have some of this with my left eye (surgical site). However, it too is pretty minor. I can use drops as needed and usually only put them in before bedtime. The first week I used them quite regularly during the day. My eye is not painful.
Tinnitus -- I had this prior to surgery and immediately after surgery. The sound changed after surgery to more of a buzz or hum for the first few days. Now I rarely notice it. Occassionally if I am in a very quiet environment I might hear it, but certainly is not a constant issue for me.
Surprises -- For me the biggest surprise was how well everything went. I was told to expect 12-14 days in LA. I had surgery on a Friday, was released to Seton Hall on Tuesday, had follow up appointments on that Thursday and flew back to Iowa on Friday. Everyone on the medical staff was fantastic! I would recommend them in a heartbeat.
Other -- I am at home recovering, taking it easy. As my local ENT reminds me...you look great, but remember this was major brain surgery. Your body needs time to heal and adjust. There are many adjustments...hearing loss in one ear, balance, eye sight, fatigue, etc... But if you approach this with a positive attitude and allow yourself a little humor in the healing process it all helps. I have been blessed with a huge circle of supporters and prayers. This truly has carried me through. I am so hopeful not to have a set back at this point and am just appreciating the blessing I have received.
Hope this helps. Send a personal message if you want more. ~ Kathy

[VTSurvivor]

I had my AN removed in 2004. I have a weight in my eye for eye lid closure and also use heavy ointment nightly. As for the facial paralysis, that is an on going issue. My doctor told me to not expect any other growth or movement after about two years but I can honestly say I continue to get small changes still after 7 years! I can't say my face will ever be like it was but it is exciting when you get any movement back. Balance will always be an issue but our bodies are amazing. Mine has been able to compensate for almost everything that has changed. I too have issues when I am tired or it is dark.The one thing I haven't seen mentioned and I am not sure if I am the only one who experienced this but I had to relearn all my fine motor such as writing, typing, hitting a nail with a hammer, picking up small things etc. My doctors were more concerned about  warning me about the gross motor issues. All of fine and gross motor issues are temporary, which is a wonderful thing!! You can get through this.

[Rivergirl]

I had McKenna and Martusa on May 31st this year, they are both awesome Dr's, great bedside manner, Mass General is a really good hospital, felt kinda privileged to have my surgery in one of the great medical Mecca's of the world.  If you choose them you are in good hands.  I had a very small amount of facial droop that cleared in days, now only noticeable in pictures and mostly by me.  I am single sided deaf as a result but in a lot of ways my hearing is more acute, no longer have the muffled sounds so in that sense it can be positive.  I had just minor problems with balance as my balance nerve was dying for a couple of years pre surgery so I had already compensated a lot.  My tinnitus is better, I had very loud sometimes piercing, chirping now I only have what I call normal tinnitus......which I have gotten used to, only in the silence is it bothersome.  I think I had a good recovery, I worked hard at it and my husband was a pusher to get me moving.  The surgery was long and hard on my body and the first few days I would like to never remember.  My best advice is to be in very good shape going in and I was not, be prepared and it will be easier.  I just had my 4 month follow up and there may be a small amount of residual tumor, something showed on the MRI but Martusa says it may be nothing to worry about so I am not going to worry, for now.  Hope I answered a few questions, I try to be truthful about my experience.