Discussion in 'Meniere's Disease "Database"' started by james, Mar 14, 2010.
Thanks for posting this! I am aware that birds can regrow hair cells and am very jealous!
Had VNS Surgery 3 weeks ago, doing great and went out to dinner tonight for fathers day with my sisters and did a little shopping too. Like most people who had this surgery, wish I would have done it a long time ago...there is no need to suffer and have your mind drive you crazy wondering when the next attack will happen. I had the best surgeon in orlando who had done many of these and is the best..Dr. Max Medary.
Congratulations, JillT!! It's so nice to hear a new success story here.
. . . and if birds can regrow hair cells . . . eventually our doctors will learn how we can do it, too. Just wish they'd hurry up. ;D
I love this post, I also wished I had my VNS sooner, and one of the biggest benefits for me has been that I just don't worry about attacks anymore. We've all had the brief bit of dizzyness with a sudden head turn or other quick movement, before the VNS I woud just freeze and wonder is this another attack coming?? I still get the quick dizzys like normal people but I no longer worry about an attack, it's just so comforting to know you will not be having any more attacks.
Here is a nice post from Irelandman.
I've often wondered if my situation was caused by allergies of some sort. I'm going to try that. I also have another question for all of you. Has anyone ever asked about or tried tubes in there ears to relieve the excess fluid? My child has them and I wondered why that wouldn't work. Any feedback?
Some people have reported getting relief from having tubes inserted (some have them so they can use the Meniette Device). You might try the search engine for more info - put in tube or tubes.
You will get more responses if you post this in the Living room section.More people will see it.
Here is a link to Pianojoe's success story.Anti virals and anti fungals among other things.
Skye has posted about her experience with VNS on this thread.
I think I'm into remission again! YAY!
With Nicole's permission I am posting her story on VNS. January 17,2014
This is the second time I am trying to type this. I was diagnosed on my 30th birthday. Had no idea what was wrong with me and was in sales and in the medical field. Once I knew what I was dealing with I followed all the posts, books on low salt cooking, cut salt down to 400mg a day, didn't drink, tried to de=stress..Had a tube put in, had injections, 90 mg of steroids to bring back my hearing..was on Diamox..used for people climbing high mountains-makes your hands/feet numb and extremely tired..and I don't sleep much as it is. I bought the Meniett Device..3500 dollars..I did it all...I had my rescue meds...the meclizine, valium, Zofran as long as I could get them in fast enough...It was hell and I relate to you all.
After suffering through 2 pregnancies...My Meniere's took a turn for the worst, attacks clustering..couldn't manage to take care of my 2 little girls..The final straw was being pulled over by a State Trooper for drunk driving at 3 pm with my kids in the car but it was as I was pulling into CVS to get more rescue meds and had no idea the attack would happen. I had to call family for the girls and yet another ambulance ride even though they couldn't do much.
The State Trooper told me he would hold my license until I got treatment. That was the turning point. I had moved to FL and there luckily was a Meniere's specialist in the area. I called and got an urgent appt the next day. I brought my large binder of all I had been through, VRT, Stroke clinic, etc etc...he took his cell phone out of his pocket and called a neurosurgeon saying it was urgent to see me ASAP. I had an appointment the next morning. He only does Meniere's surgeries and a few other 8th nerve sections. He met me, saw my binder, told him my story. This was Friday morning. He moved his patients and I was the first patient Monday morning. Yes, 2 days away..He told me to line up a list of family and friends because the first 2 weeks would be difficult and would be vomiting and dizzy...at that point I didn't care. He told me of the risks. The risks far were less than the benefits.
The surgery went amazing. He was able to cut my balance nerve without affecting my hearing and other nerve (there are 3 nerves bundled together near the top of your skull) I never have dyed my hair..I do Locks for Love the past 8 yrs. He told me to put highlights in or dye it because the blood would stain it. Nothing like having that done a day before major surgery.
His name is Dr. Medary and he practices out of Dr. Phillips hospital in Orlando. How ironic I live here and been to all the "supposed best physicians for Meniere's" It was a 1.5 hour surgery. I was lucky because my nerves weren't half as high as he thought. So the surgery was great. I don't remember much the first 3 days of recovery, you are highly sedated because of the staples in your head. BUt after that I was free to go home. Problem was I had high fevers, not from the surgery but another complication I had. So I ended up back in the hospital. Actually was a blessing. You don't receive much pain meds at day 6 on because your (whatever it is)_ had to teach the other side of my brain how to walk again etc...I was in a rolling walker by day 7 which he told me I was one of the 10percent that healed so quickly so I was on the neurosurgery floor and would just walk around the floor for hours doing my own rehab on top of theirs I was determined to get out of the hospital and have my balance back.
IT WAS AMAZING!!! He tied my balance nerve with no EFFECT on my hearing nerve. I still fluctuate around 40 percent, tinnitus still there but less annoying..I HAVE A LIFE I HAVE NEVER KNOWN!!!!!!
Although it is the end of the road for a Meniere's patient...I would do it again ....the rehab was challenging but I ride a bike, I can go on roller coasters, I have no fear...threw out all my rescue meds and boy was that an awesome feeling!!
Check with your insurance before hand...but I so happy and blessed I made this decision.
Again, I know I am going to get a backlash from Meniere's suffers for years....but I have a have my life back. I don't understand why more suffers don't investigate this surgery. I was diagnosed at 30and spent my 37 th birthday having my surgery. Yes, it is painful...what surgery isn't. My sinus sugery hurt more than this.
Everyone tries the "BANDIAIDS" that only last so long. an example of what your life could be like.have a a new spirit , time with my kids, and NO FEAR!!!.
God bless you that still suffer...from one patient to another.I don't know why you would continue life when my disease and yours ..where there is such a surgery ...blows my mind hy more suffers don't do this..this disease becomes one of as posters on this site say "disability" or "unable to work" I am back, short term memory back...it saved my life.
I know , for sure,, I will get not so nice emails back, so if you want to bash my story,,,,,save it. I am a living proof that I don't have to deal with any posts, bandaids, vitamins, supposed flavonoids, etc...
wish you all the best of luck
This is my last post..inspiration...can't stand the bandaid approach...not when there is a real surgery that cures this disease instantly...maybe 3 weeks at most...but dear LORD the posts....I couldn't imagine living all my life or the years so many of you have with this [email protected]!
best of luck, Nicole
Yay, Nicole!!! Many people need to hear this. From the beginning, I was talked out of having any kind of destructive procedure by most people active on this site at the time until I tried the long list of things many claim to have helped them. For sure, there are misdiagnoses and varying degrees to which people suffer from Meniere's. Others encourage us to "hold out" for a cure or better treatments that are being studied. But enough is enough at some point. As for a cure, it can take 5-10 years for new cancer treatments to come to market once they're developed, there's no reason to think anything for Meniere's will come sooner than that - in fact, it will probably be much longer unless it is simple and inexpensive to develop. And if that were the case, we'd probably have it by now. But I digress.
But, much like yourself, I got hit hard from the beginning and nothing seemed to work. I had (have) a career I love, a husband, and 3 children at home. I didn't have much time to waste. A year into this hell, I had my first gent injection. I've since had 2 more which have given me acceptable relief. However, 5 years in now, I have had some set backs the past year which have lead me to try "one more thing." I am hopeful that this will at the very least buy me more time, but I've already picked out 2 fabulous surgeons (will be tough to decide which to go with, if I must) - but my gent experience lead me to the same conclusion you have come to: I will not suffer needlessly again. I will not lose my livlihood and the life I want to live, without a good fight.
I am so happy for you. Your words will not fall on deaf ears. I needed to hear this when I was first diagnosed. But in the end, I figured it out. Your story will help others make the decision that is right for them. Thank you for taking the time to share it.
You can have this surgery without losing your hearing?? I had no idea. Having just started experiencing vertigo, I've been somewhat distraught. I only have hearing in my right ear, if we have to do surgery, I thought I would lose it all. I'm so encouraged to read this post. To know I don't have to suffer for years with vertigo is amazing.
With his permission I am posting this from dkchuvcw.
I haven't posted here in about 7 months but I just wanted to update everyone, especially those who helped me out a lot with their advice and encouragement, on how I'm doing; and also I'm hoping that my experience might also be of help to some people here as well. I'm happy to report that things have been going fine. My hearing has been steadily improving with no dizziness for the past several months.
I've been under the care of Dr. Derebery at the House Ear Clinic and she has been wonderful. She started me on Famir last April and that brought some improvements in my symptoms, but what really did it was allergy shots. About 3 months ago, Dr. Derebery suggested that I'm might have some sort of allergy. I told her that I've never had allergies. Yes, once in a while my nose would run a little or I would sneeze a bit but it didn't happen often enough for me to think that I was allergic to anything. Still, I consented to allergy testing and was I surprised. Almost every needle prick they did--and it was at least 50 of them, or at least it felt like that many--elicited a reaction that was considered positive. Molds, pollens, cat and dog hairs. You name it, I reacted to it. They started me on allergy shots about 3 months ago and my hearing improved immensely. I just had my hearing test today and except for a 30db loss in one of the low frequencies everything else was normal (I've had 60 to 90 db loss in the low frequencies previously). She's keeping me on Famvir (going on 9th month or so) and I'll be continuing the allergy shots for quite some time. My hearing is not completely back to normal but the slight lost is not that noticeable most of the time and we're hoping that it'll continue to improve as I advance with the shots.
So, I want to thank everyone here for posting, sharing, and encouraging. Especially you June. It was you that let me know about Dr. Derebery, and opened me up to the possibility of allergies causing all my problems. Thank you so much. Also, thanks Vicky for all your encouragement--I hope you are doing well.