I have written quite a few posts on this type of surgery and have received a lot of comments from folks who have had the surgery. One of the people that have had the surgery and have keep us informed about how she is doing is Peggy.
The other day I received another comment from her…
Two months after my Labyrinthectomy, I am still experiencing inflammation in and around the left ear that's causing dizziness and disorientation, as well as some pain and nausea. We've bombarded it twice with prednisone to get the inflammation down, and now are trying to keep it down with a constant diet of diazepam (valium). This is getting very frustrating for me. I can't concentrate on my new job very well, and I have a very difficult time focusing my eyes on a computer screen all day long. I'm going to the eye doctor next week to see if a set of "prism lenses" will help with the vision, but I'm at my wits' end about the vertigo and the inflammation that just won't go away.
Anybody have any experience with this? Prednisone just isn't a long-term solution, and it makes me have wicked mood swings.
Thanks Peggy
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15 comments:
David and Peggy:
constant dizziness is not a symptom of menieres.
it could have been a combination of mav and menieres and the laby took care of the menieres but not the migraine associated vertigo.
That is what makes destructive surgeries so risky, especially with the technology coming down the pipeline. I feel in 5-10 years it will be beneficial to have both vestibular nerves attached.
Tomas
David:
are you considering a laby, I know you have had several gent shots.
Any more gent in the future?
I am a little afraid if the laby, but would prefer that to a vns.
Good luck Peggy
Ronald
Hi Ronald,
No, im not considering surgery
thanks
David
Tomas, I had similar reservations about the surgery... but I think it was worth it to try to quash the possibility of ongoing vertigo attacks and the nausea that was making my life a daily exercise in fear and turning me into a shut-in.
Dr. Della Santina also mentioned migraine-associated vertigo, but I don't really understand how that can be when I don't have extreme headaches or any of the usual symptoms of migraines (the aura, more photo-sensitivity, and so on). I'm not writing off the possibility, but I think it's a stretch.
But I'm going to keep looking for an answer, which probably will involve investigating MAV further.
It makes me very cranky that I keep coming up with illnesses, or "syndromes," that are controllable to a certain degree but not curable. Ah, well. Onward and upward. Or, as my husband says, "Take baby steps."
I am 3 weeks after Labytimthectomy . I still have tinntus and the left ear still feels full.
Last week I resumed jogging on the treadmill and have begun throwing a volleyball up and down because I wish to resume playing ASAP, I currently look a lot like a drunk VB player but it is getting better. Sudden movements cause a lot of balance.
In everyday life I get a slight case of the wobbles everynow and then but I can move confidently. My eyes sometimes ache like eyestrain if I move around a lot . I have just resumed driving short distances.
Anonymous, if you want to use the volleyball toss as a physical therapy, try tossing with just one hand, up and down, for awhile; then try tossing from one hand to the other. My physical therapist used to have me do that for eye stabilization and balance improvement, although it was with a tennis ball, not a volleyball.
I have the same problem with sudden movements causing my balance to go "off," and it can also happen if I simply move my head quickly to one side (I had my labyrinthectomy last October).
As far as the tinnitus and feeling of fullness are concerned, you are only three weeks past the surgery. There could still be some inflammation causing pressure in there... that would also impact your balance.
Be patient. It's too soon to tell what your new "baseline" health situation will be. I know it's hard to wait, but keep doing what you can do, and improvements will come for quite awhile still.
It has been eight months since my Labyrinthectomy. At first I thought I was on the fast track to full recovery. However, it has hit a plateau. I am am afraid to drive due to uncontrolled eye movements that make me feel like a bobble-head doll and occasionally find myself losing my balance. When I work, (computer programmer), I feel nauseated and have to take frequent breaks. Fortunately my employer has been great and allows me to work at home. I am not sure how much longer they will be patient. I know they do not understand and if I was in their shoes, I would probably would not either. The doctor says it can take up to a year to recover. I am not sure I can make it that long in this present state without some signs of improvement.
I am curious if other have experienced the vision issues and the bobble-head feeling. If so, do you have exercises or any type of approach to break through this hurdle?
Thanks,
Mike
Hi Mike,
I didn't have the laby surgery but I did have the gent injections and the symptoms that you described were similiar to the ones that I had. especially the vision issues.
I don't know if it would work but ask your doctor about balance therapy exercises.
stay in touch
David
Mike, I am so sorry to hear about your experience... and it terrifies me, too. I had the labyrinthectomy last October, and I'm experiencing EXACTLY what you describe. It sounds as if we had our surgeries about a month apart.
I tried to take on a new job in November, which was a huge mistake. My employers were not at ALL understanding or accepting of my situation. I think they just didn't have a clue what it was or what might happen, and they fully expected me to be able to think clearly and put in 80-hour weeks like everyone else there. They fired me three months later. And my self-esteem and confidence plummeted. I'm in therapy now to try to recover the will to keep trying.
I hope to heaven your doctor is right about that one-year recovery and that he's not just trying to keep you from panicking. My ENT, who treats many, many Meniere's patients, has no idea at this point what to do for me. She suggested I see a neuro-ophthalmologist about the continuous eye movement (nystagmus) because apparently there's a special kind of contact lens that might be able to correct for that. But I don't know... the idea scares me.
We have also talked about putting me back into vestibular rehabilitation therapy, which could help with the balance and maybe the eye movement. There are "eye stabilization" exercises you can do, which I could explain a little more fully if you would like. But it would probably be better for you to consult a physical therapist who specializes in this area; your doctor should be able to provide a referral.
Good luck. I empathize, and I hope both of us find our way out of the woods. You, too, David. It seems there is a very strong connection between vision and the vestibular nerve that they haven't fully addressed yet.
David and Peggy, thank you both for the information. I have been exercising my eyes regularly based on my physician's guidance but the plateau I have reached just what budge. If you know of a web site that shows vestibular or "eye stabilization" exercises I would be grateful if you would share.
David, thank you so much for this web site. While I live in metropolitan Atlanta, it is very difficult to find those that have the same struggles.
Peggy, it is comforting to know that I am not abnormal but I am very saddened that you (and others) have to experience the same frustrating recovery. The doctor stated after month 4 that the pace of recovery would slow but that I would reach a level of normalcy within a year. I hope he is correct. He does several surgeries a week so I guess he knows. It is just not what I expected. Meniere’s has been a struggle for the last 12 years and I hope that this hurdle is the last.
As for your former employer, shame on them and YOU do not need them. Be thankful that you found out their true color earlier rather than later. I know how difficult it is just to TRY to work in this condition and admire your courage in starting a new job so early after your surgery. I did not return to work until two months after my surgery. The first day I lasted 20 minutes. It took 2 weeks to get to 6 hour days. My doctor was amazed and told me I was doing to much. I am at 8 hours a day now and really pay for it the balance of the day. It takes all I can give. Your story is AMAZING and you should be very proud of yourself!
Take care. I will be praying for you.
Mike
Mike, I've looked for sites that have the eye stabilization exercises, but nobody seems to have details on the ones I did in rehab.
One exercise involved tossing a small beanbag ball (size of a golf ball but lighter and softer) up and down in one hand while following it with my eyes, then tossing from one hand to the other and following it as it made a high arc. The idea is to toss it up about two feet and across to the other hand. I would do 30 repetitions of this.
Another exercise I did was gently tossing a small bouncing ball up against a wall and catching it as it came back, again while following it with the eyes.
The one I always started the session with is the one I can't find. It involves two identical charts of the alphabet, with the letters mixed up. You would stand facing the charts and look from one to the other while tracking the alphabet in order. To make it harder, you can stand with your back to the charts and turn with your head over each shoulder as you track the alphabet from one to the other ("a" on one side, "b" on the other side, and so on back and forth until you are done with the alphabet). You would use your hand to touch each letter as you progress.
The last one I can recall is very simple. You find something stationary on a wall in front of your face that you can focus on (I use part of a picture, really focusing on a particular detail, such as a letter of the alphabet). Then you turn your head slowly from side to side, never letting your eyes leave the object you are focusing on. You can increase the speed until you find the top speed at which you can still focus your eyes on the object. Then maintain that action for about a minute, turning your head from side to side rhythmically.
I hope these help. Let me know if you need me to clarify anything.
Regarding the job, it was pure serendipity that they offered it to me only two weeks after I came out of surgery. I was very worried about the timing, but the pay was awesome, and I had been out of work for about a year. In short, I was desperate. And I think it was worth a shot, although the results confirmed my fears. I hope maybe I'll be able to go back to some kind of work this year, even if it's only freelance editing of some kind.
I know what you mean about really paying for it if you put in a "real" day's work. That's pretty impressive, that you can do that at all. I hope you get back to "normal" soon, or at least suffer less in your efforts. It's a hell of a thing, isn't it?
I light candles every day for all my friends who are in pain or grieving or sick or otherwise suffering. What's funny is I'm not at all religious. It just somehow gives me hope and focuses my attention on healing, for me and everyone else. You'll be on my "list." :)
Peggy,
Thank you so much for the detailed instructions and for the candle! They are greatly appreciated. I will definitely add these to the regiment.
Hang in there.
Mike
I am the anonymous Feb 28th poster who was trying to return to Volleyball. I thought I would update. I have returned to playing Vb. I am 61. I can spike again although I have lost about 4 inches off my jump. There are about 10 plays a game I have vision issues and about half the time on those I screw up a play I normally would have made. If I notice a move that gives me trouble I try to teach it to my brain asap. It is amazing how quickly the brain learns.
As far as regular life, I don't walk in a straight line without at least one wobble every 30 or 40 feet but I have no fear of falling .
My tinnitus is still loud but not as loud as pre-surgery. Some days my ear feels full and on those days my vision feels a bit like eye strain...sunglasses help.
All in all, a tremendous success, but I am still looking for improvement about 14 weeks in.
I am bummedthere is so little info about the recovery process...oh and you guys can call me Ron. Thanks to all of you.
cawthorne cooksey
very good for eye movement
ali
Ron, I just found this post ... don't know how I missed it before. I'm so glad you are making such good progress. Gives the rest of us a bit more hope. :)
I'm still on a plateau where I can't risk any sudden or explosive motions without the real possibility of falling down. It's a work in progress.
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