Had labyrinthectomy with BAHA on Thursday; home on Sunday

Letting you all know the laby went well. As with others, the first 2 days were nonstop spins, but it began to settle down. The kind docs and nurses at Mayo have been helping me along with a variety of nausea-inhibiting meds, some which make me quite sleeply. I am back at home now with my lovely daughter in charge. Can't wait to eat her cooking instead of the hospital's!

I a little too loopy to write much today. Will be in touch tomorrow.

:-\

 

Other than being a little bobble-headed, things are going pretty well here. Surgery was Thursday afternoon and took about 2 1/2 hours for both the laby and BAHA implant. I'm glad I got them done at the same time and can spare a separate surgery and recovery. The week before surgery I was anxious -- not so much about the surgery, but about the recovery and the thought of knowingly giving myself perhaps the worst vertigo spell ever. I felt much better after the pre-op consultation with Dr. Neff, and went into it in upbeat hopefulness.

Dr. Neff did the surgery at Mayo Rochester MN, and I am grateful to have been in his competent and experienced hands. Some years ago he co-authored a paper advocating the use of facial nerve monitoring during labyrinthectomy surgery in order to avoid the risk of nicking the nerve, and I think that is now standard practice. There's just no substitute for experience when doing a surgery like this. The surgeon uses a microscope and has to hit a tiny target with his drill. S/he has to know the landmarks on the way while avoiding complications. They don't use imaging equipment during the procedure.

I asked Dr. Neff about the 95% laby success rate -- what is the cause of the 5% unsuccessful surgeries? Turns out it comes down to diagnosis rather than technique. If a person still has vertigo after this surgery, it is because there is something other than Meniere's going on in that ear.

Mayo took good care of me; however, the Rochester clinic only takes Meniere's patients from Minnesota and the adjacent states. I was glad to be in the hospital during the first few days, which kind of blurred into each other. A lot of slow spinning the first two days, but nausea and pain were well managed by IV. By Sunday I was able to take a seated shower by myself and walk (er, shuffle/lurch) down the hall with a walker. Dr. Neff left it up to me whether I wanted to go home that afternoon or stay another night. Since the dizziness was largely gone and nausea was well-managed with oral meds (zofran, compazine, lorazepam), I felt ready to cut the ties. I've only used Tylenol for pain, but they sent me with a 50mg tramadol prescription to take as needed. I'm also on a preventive course of antibiotics.

At first I used a walker in the house; today I'm moving unassisted from object to object and getting around pretty well. The Mayo team prescribed a bedside commode and a bath transfer bench, but we didn't get around to getting them right away, and haven't needed either. I still use a walker outside, though.

One thing that was a little bothersome is that I wear glasses, and they come close enough to the stitches to irritate after a while. Dr. Neff's suggestion was to temporarily remove the side piece. I'm feeling very upper-crusty now with my faux opera glasses!

Thanks for all your support and encouragement -- especially to those who have gone before me and written about it. I'm glad to have taken this step.

 

Day 5. I've found that removing the sidepiece of my glasses didn't work so well with progressive lenses. There isn't enough stability left to keep the center of vision in one place, and it seems to mess with the vestibular function. The 2/3 glasses are useful at the computer or for reading when sitting still, but it's not a solution for vision when moving around.

I mowed the lawn today. A little nausea means it's good for vestibular rehab, right?

 

Day 9. My apologies for the long post that follows, but maybe some thoughts will be helpful to others considering laby and BAHA in the future.

Yesterday I had my post-surgery follow-up at Mayo, and the dressing was removed from the implant abutment. Both the implant and labyrinthectomy incisions are healing very well, and over the next several weeks the sutures will dissolve. The MRI showed no problems and everything in its right place. Pretty much it looks like I just have a bad haircut.

Tylenol is all I’ve needed for pain since coming home, and I haven't taken any of that since yesterday morning. I haven’t needed nausea medicine in three days and have had no vertigo since leaving the hospital. On the day of surgery I stopped taking the diuretic that was prescribed more than a decade ago to reduce fluid build-up that could provoke vertigo – it's so nice to say goodbye to those medication side effects. The doctor said I’m okay to ease up on the low-salt diet and will be able to eat normally after my 3-month visit assuming all continues well.

Yesterday I was able to take a walk on paved paths around a pond without any assistance. Yes, my gait appears a little drunken and wandering, but there is improvement every day. It will still be a month or three before I’m able to turn my head well enough to be able to drive, so on Sunday my daughter will take the temptation of my car back to Chicago with her. I have ongoing nystagmus (jerky eye movements associated with faulty vestibular signals) which makes it slightly difficult to focus on objects, and that is to be expected. Therapy exercises are challenging, as they should be, because of the nystagmus. Both balance and nystagmus will improve as my brain continues to accommodate to the missing left vestibular function and relies only on the right.

I think there are a few reasons that my recovery has been going smoothly. First, it's my hypothesis that meniere's had been so advanced (i.e., I waited so long) it had already robbed me of most vestibular function on the affected side, and my brain was probably already retraining itself to rely on signals from the good side. That means improved balance and reduced nausea/dizziness. However, I can't reconcile this hypothesis with how I could have had such a bad vertigo flare for 5 months this year if there was so little vestibular function left. Why not a quiet "burn-out"?

There are also psychological factors that have played a role in my perception of the laby recovery. I haven't had to deal with the disappointment of post-surgery hearing loss that some people face. I had a truly hellish first half of the year with near-constant incapacitating vertigo, which now makes any post-surgery discomfort easier to take. Until now I did not realize just how much the anxiety of the next attack had imprisoned me even during the times I wasn't spinning. I had become afraid to leave the house, didn't socialize, and lost my confidence and hope. With the definiteness of a labyrinthectomy, that anxiety has evaporated. Gentamicin injections wouldn't have done that for me, and it's the main reason I ultimately chose the surgery. It's impossible to have the faulty vestibular signals that cause meniere's vertigo if there's no labyrinth to give any signals at all. There are only two ways I could have vertigo in the future -- one, if there is some other disease process than meniere's; and two, if the meniere's presents bilaterally. After 17 years of completely classic presentation of the disease, there wasn't any uncertainty in the meniere's diagnosis. And, as my surgeon said, if there is something other than meniere's happening, the labyrinthectomy will reveal that and it can be treated accordingly. As for bilateral meniere's, testing shows no evidence of it, and there's no point in worrying.

The simultaneous BAHA implant is also helping with my hope and my confidence. Single-sided deafness makes socializing uncomfortable and encourages isolating. The BAHA is far from a perfect solution, but anything that can help to remove even a small barrier like the "head-shadow" effect is a positive step. I think a cochlear implant would be a much truer prosthetic for restoring hearing on the bad side, but without FDA approval for one-sided CI, it's not covered by insurance and is prohibitively expensive. CI would also be a benefit for those of us who become bilaterally affected, which may be why it's available for one-sided meniere's patients in many other countries. But this is all a discussion for another thread.

Typically Dr. Neff sees patients at 1, 2, and 3 months post-surgery, but because things are going so well, I can skip the first two of those and will see him again at the three-month mark. At that time I will receive the BAHA device and have it activated. It will transmit sounds from bad side to good side, so I won’t have to finagle the seating arrangement at Thanksgiving this year. I have much to be grateful for.

 

June, have you tried CROS hearing aids? A mic in the bad ear transmits sound via bluetooth to a receiver in the good ear. They were more helpful to me than any other hearing aid, but I couldn't tolerate having something in my ear so gave them up at the end of the trial period. The BAHA works in the same way, but I understand sound quality should be better because the bone vibrations get picked up directly by the good ear without having to go through air in the ear canal.

Doing a trial of CROS hearing aids might be helpful in assessing BAHA.