One week update: Overall I’m doing ok. I had the severe nystagmus for about 2 days after surgery, then it started dying down but for another couple days after that my eye muscles were in a ton of pain. This part was sort of a surprise to me. The pain has since mostly gone away but I’m still having some vision issues. Especially at the beginning and end of every day, for a couple hours I really can’t focus well on anything near or far. It also happens if I try to watch tv or read for too long. Sometimes it’s double vision but mostly it feels like my eyes don’t want the align together correctly. I know I need to do more exercises to work on this. My husband assured me this will get better with time. Stomach issues have pretty much completely resolved. My walking is still pretty awkward but I’m trying to get up and about more and more. I can walk around the house unassisted with occasional use of a railing or grabbing a wall. Outside is a much bigger challenge. My husband got me a pair of walking sticks and I use those outside... so far only venturing about a block to our mailboxes and back. I’m not speedy and I now notice more variances in pitch of our sidewalks than I was ever aware of before but I’m doing what I can. Turning my head when walking is still a huge challenge and I know I’m very stiff necked the whole time. Again, I need to do more exercises. It’s so easy to just want to lie back where it’s totally comfortable and not push my body and head to do things it is fighting doing. Appointment at the end of the week to remove the laby stitches and maybe remove the cover that’s on the BAHA post, not sure.
I had the same eye issues after my surgery, they are just now getting better, today is just over 30 days for me. Part of the problem I have is I have to wear reading glasses when I work or read. Making the adjustment from the reading glasses back to no reading glasses made my vision very wonky for quite a while, its getting a lot better for me now and the transition is much quicker between the two. Hopefully yours will be faster. Walking and turning your head at the same time is difficult, I remember, but the more you do it the better off you'll be! Keep moving, keep walking, but make sure your getting plenty of rest as well.
Well done for all the progress so far! It is only going to get better each day. Keeping my fingers crossed for you
I remember the double vision startling me after the laby. The one thing no one warned me about. Thank God it didn't last long. Keep moving you are doing great!!
Update two weeks post op: Overall doing well. I had the stitches removed and everything is healing nicely. I can even sleep on that side again, if I make sure the BAHA area is well padded by the pillow. Occasionally I get a tiny tweak of pain in the skin around the BAHA but it's no big deal, just enough to notice. Kind of pinchy pain. I don't get the receiver for it for a couple more months, and I am interested to see how it feels and works and improves hearing. Honestly I haven't missed what hearing I lost from the surgery at all. However I haven't been out to restaurants or other noisy places yet so I think in those types of situations it will be very helpful. I am more stable on my feet, though not 100% yet. I still use the walking sticks in the neighborhood but it's more an abundance of caution. We were hiking around a local park this weekend (easy hike -- even part of it paved) and my 6-year old took off with my sticks to use as "rocket boosters" (of course) and even with hills etc I was walking just fine without them. Turning my head to the right (bad side) when walking is still something I work on. I started vestibular rehab this week and the therapist showed me some tricks I should be doing, like turn head first, THEN turn body in a new direction to walk -- which feels kind of forced and robotic but does wonders for the dizzy feeling I get when turning otherwise. It isn't really "dizzy" per se, but just this kinda yucky feeling. Again, slowly improving. The vestib rehab did note that I have... I forget the word but one eyeball is now tracking higher than the other. My neurotologist fully expected this and had said it would eventually go away - probably. The therapist seemed a bit more concerned but said let's keep an eye on it. We went up in the mountains for an afternoon this weekend, and I sat in the backseat while my oldest (15, working on his license) actually drove. My husband was next to him doing the instructor thing. I was really worried I was going to get super sick, but I didn't! Even with mr. herky jerky behind the wheel. In general, being a passenger in the car is leaps and bounds less terrible than it was on the drive home from the hospital 2 weeks ago. I have out of town family here helping (mostly driving kids around) for another 2.5 weeks and then I need to be driving and relatively functional again. I'm resting as much as I can and thankful I have this luxury to focus on healing.
It's good to hear your recovery is going smoothly. I hope the eye condition stabilizes quickly. And that mr. herky jerky progresses with driving as well as you do. Next week I am meeting with the hearing aid group to learn about BAHA. Which device did you get, and what factors influenced your choice? Thanks for posting, and keep up the good work!
Hey Clare- the only real choice I had regarding BAHA was selecting a color that sort of matches my hair. If I remember right, there were 3 different models available to me and they varied in their capabilities. They were also slightly different sizes for the receiver. I have an iPhone so I didn’t need a remote control that one offered, since I can use my phone instead for adjustments. I can’t even remember the model name of what I got - will have to ask my husband who knows these things well. I know it’s a “latest model” and either the BAHA company or my insurance included one accessory for free and (again, since I don’t need a separate remote) chose a little device that you can put on a table at a restaurant that streams filtered voices to the BAHA. Another option would have been a Bluetooth device for the tv instead. I know my doctor and my husband differed on the model used - my husband implants them in kids routinely and favors a model that sits flush under the skin and uses a magnet for attachment of the receiver. I went with my doc’s advice and instead got one that has a small post that rises maybe 1/4” off my head. The receiver snaps on. He explained that the magnet type is probably easier to put on/off for children but the post kind I got has better sound quality which as an adult I favored over the ease of putting it on (how hard can a snap be?).
The three manufacturers I'm aware of are Oticon Medical (Ponto), Cochlear (BAHA), and Medtronic (Sophono -- the magnetic one). I think Cochlear BAHA 5 is the one that plays nice with iPhone. I would guess an additional advantage for kids with the magnetic attachment is that there is no abutment to clean daily, but as you say, the sound quality hasn't been as good. It seemed that Ponto had very high marks for a while, but that was before the BAHA 5 came out. Next week I'll get my doctor's recommendation. There's more info about bone-anchored devices at the acoustic neuroma support forum: https://www.anausa.org/smf/index.php?board=17.0
Update 3 weeks post up: Still chugging along. I think things get a tiny bit better every day, but overall I'd say there's been less of a difference between this week and last, compared to between weeks 1 and 2. My vision issues are definitely getting better, but still not 100%. I rarely have double vision anymore, but I still feel some sort of "alignment strain" as they don't always line up totally. When looking in the mirror, it's harder to tell the difference than it was last week, when it was blatantly obvious. My husband says he doesn't see it at all now... will see what my doctor and the vestib rehab person say later this week when I have follow-ups. I'm still regaining my balance. Turning my head when seated feels almost normal now, but still a work in progress turning when walking. Standing in one place (as in, waiting in line as I did the other day) is somewhat uncomfortable still. I feel more stable when moving. Tinnitus in my bad ear has slowly ramped up again. Prior to surgery, it was always there but varied in volume and pitch. Immediately after surgery, it was much much quieter and i was THRILLED. Now I seem to be back to reality where it fluctuates and can be very loud again. At first it is alarming, as this often used to be a signal that vertigo was coming. It still gives me anxiety. Definitely no vertigo though. I'm also noticing more tinnitus in my good ear. Not very loud at all, but definitely a presence. A bit of pain and slight fullness especially when we've had storms roll in. Crossing fingers that stays quiet. We will be monitoring it closely, especially since I've now weaned off the diuretics I'd been on for 7 years. Trying to keep nervousness about my good ear going bad, at bay.
PleaseNoDizzy. Your updates are really great. If I ever have to go the laby route, you and RJW have definitely made me less fearful. But yeah, it can't be easy. Much of what you write reminds me of my post VNS. Keep up the fight.
I've shared your post-surgery updates with my daughter and other family who will be helping me out through and after my surgery on the 23rd. Your real-life descriptions are more informative than anything the doctor -- or anyone who has not been through it -- can provide. Thanks, and keep strong!
I’m so glad to hear that Clare, I was hoping it is helpful. I know for me, making a big decision like this I need to read up as much as possible so I know what to expect. Google lead me to a few testimonials but they were few and far between. I just wanted to put it out there for those who come after me. Of course everyone is different, blah blah blah, but it’s nice to have an idea of what to expect.
Yesterday I met with the audiologist and tested both the Oticon Ponto 3 and the BAHA 5 by Cochlear. Each device sounded quite different to me, so it was easy to choose the BAHA 5. I'll have it implanted next week along with my labyrinthectomy. Bone-anchored devices only work as long as there is good hearing on one side. The device implanted on the bad side picks up sound and sends vibrations via bone to the good ear. They don't restore hearing on the bad side or help with sound location in the way a cochlear implant does. I wondered why there is not more use of initial cochlear implant with meniere's patients, where there is a notable possibility of hearing deterioration in the "good" ear through bilateralism. The medical librarian at the clinic helped me research the question. Because a cochlear implant connects directly into the auditory nerves via a wire in the cochlea, it can still provide hearing in a meniere's-damaged ear. It restores hearing on the damaged side. In several other countries a cochlear implant is standard along with labyrinthectomy, and I saw several studies showing success with single-sided deafness. It turns out that in this country the FDA has approved the device only for bilateral deafness. Implanting it for SSD would mean using it off-lable, which prevents coverage by most insurances.
^That's interesting info Clare. Good to know. I asked my doc also why we a CI wasn't on the table. He didn't mention the insurance issue to me. He said with good hearing in the "good" ear, the BAHA is a better choice, sound quality wise. He said if, god forbid, my "good" ear goes bad, then we'd be looking at a CI on the second side. Crossing fingers it never comes to that. But also reassuring to know we aren't looking at 100% deafness no matter what happens.
I’m now a little over a month out from my labyrinthectomy. As of this past week, I’m driving again but haven’t done the interstate yet. I think I’m ok for there too... just haven’t needed to. For now I’m comfortable sticking relatively close to home, getting the kids places and doing errands. We’ve gone up the mountains a couple times since my surgery but I was just a passenger. Next month I do have tickets for a traveling broadway show and meeting friends 90 mins away for that, so will def be driving for that. My daughter also has upcoming dance competitions so I guess I’m back to the grind of normal life travel stuff. I’ve had weekly vestibular therapy appts and will continue for at least another month. I need to do better about the daily exercises... right now I’m only doing them 1x per day. I still have the funny feeling in the right side of my head — super hard to explain — and I hope it will get better with more of those exercises. Turning my head is much better, though, so I do still see improvement. We are pretty sure I’m dual diagnosed with vestibular migraine so it’s hard to say what’s from that still. I still have constant pretty loud tinnitus in my bad ear and sometimes get fullnes in both, esp when storms are approaching. My helpful relatives have now flown home so I’m back to 100% mom role (work too, it I freelance from home). Today I drove my daughter to her class, then did the shopping routine while waiting for her at 3 big stores, including Costco (on a Saturday!) by myself. I was wiped out when I got home and unloaded but I did it!
Wow -- you're doing great! You didn't mention any vision problems, so hopefully that has resolved itself. I have been assuming it would be at least 2 months post-laby before I would drive and told my daughter she can take my car to Chicago for that time. If you're able to drive at 1 month, I may need to have a re-negotiation with her. : I hope the migraines stay quiet as you settle back into Mom-life.
My vision issues are definitely much improved. I only notice some lagging alignment issues late in the evening when my eyes and brain are tired. I no longer wake up with it. The first two weeeks or so, it was really bad first thing in the morning for a solid 2 hours. Double vision and all. Now no more. However (any time of day) if I lean forward over my bathroom counter toward the mirror, and tuck my chin downward, my eyes go out of alignment again enough that I can see it in the mirror. Really freaky.
