Success stories

Discussion in 'Meniere's Disease "Database"' started by james, Mar 14, 2010.

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  1. SweetTater

    SweetTater New Member

  2. VertigoMO

    VertigoMO New Member

    I just had shunt surgery on Tuesday and I'm praying that it will work. A lot of the success stories keep my hopes up. My doc said I could go back to work 2 days after surgery, but I have been having a lot of pain and now some new dizziness. I'm sure everyone responds differently. Meds did not quite do it, though they helped. Not much of a success story yet, but hopefully it will be!
     
  3. nwspin

    nwspin New Member

    I'm surprised he said 2 days, I had to take 10 days off before returning to work and that was even a little too quick. Don't try to rush your recovery, you will need plenty of rest while recovering. It is normal to be a little dizzy or to even experience some vertigo during the first few weeks. You have a lot of swelling after the surgery that takes time to settle down. I hope you have as much success as I have had with my shunt.

    Mike
     
  4. sirlanc

    sirlanc New Member

    here is my story. I got MM in 2002 with hearing loss and tinnitus. First vertigo in April 2009 and deteriorated from once a month to once a week to a level by Oct of me in bed for 6 weeks with attacks each day. I started on calcium channel blockers (CCB) in Nov 2009 and my attacks stopped. to be sure i stopped the CCB and my attacks came back. So for the past 5 months i am on them (CCB) and in remission with zero attacks or balance issues, not restricting salt or alcohol. Note: i started on JOH in July 2009 and am still on it with additional vitamins including 7g of vitamin C. i tried Antivirals, Serc, salt reduction and a chiropractor which might have also helped.
     
  5. Funshine

    Funshine New Member

  6. james

    james ''Everywhere I go there I am'' GS

    Here is Jenny's latest update:

    Hi everyone!

    It's just me, checking in on my one year anniversary. I've been feeling pretty darn blessed since I underwent the VNS a year ago. Life is beautiful for me again. Looking back now, it seems like a big dream. It doesn't seem like I have had any problems at all. Like it wasn't me, but someone I was watching. I think of sleeping on the couch for months because I couldn't lay in my own bed, puking in plastic bags during debilitating vertigo attacks every other day, and having to pray with all of my soul to God in Wal-Mart because that Pop Tarts display was too busy and making me unable to stand. I think of all of these things and know that they happened, and know that it was the most horrible, terrible, evil thing that has ever happened to me, and then I think about my second chance at life.

    I am ok now, with my new bosses unable to comprehend what kind of state I was in. I fool everyone. My only reminder is a barely-there scar underneath a still-short tuft of hair. Soon I'll be able to pull it back into a ponytail without it tugging, for now I just bobbypin it. My recovery period seems like a blink of an eye. I just think of the joy of being "normal" again. Being able to sit and not feel like I am on a rocking boat. I just cannot tell you. I have my future back! In fact, I am travelling around the state this week to attend teacher job fairs. I am looking for a job doing something that, for a while, I never thought I'd be able to do. I thought that my future that I had worked so hard on might be lost if I could not beat this meniere's. Well, now I am back in the game! I'm substituting at some local high schools while I wait for "the big job" to call me up and hire me. Things here are just normal again.

    If this whole ordeal has taught me anything, it has taught me to appreciate what I am given, no matter what. I was happy in the hospital when I could walk with a nurse holding me over to the toilet. I was happy when I was able to lay in my own bed again. I was happy when I could walk outside with the breeze on my face and the sun on my neck, without any help from anything. I was happy just the other day when I rode a bike for the first time since I came out of remission. (My butt hurt, though. I don't remember bicycle seats feeling so hard!) I'll just stare out the window now and look at how gorgeously blue the sky is and how green the grass is, and sure I feel like a big tree-hugger or stoner or something, just staring like that, but before all of this I was going so fast and I missed so much. I do not want to be ungrateful. I do not want to make that mistake again.

    Besides emotionally, physically I am doing pretty darn good. I was having some problems after I recovered because I had not balanced my sodium. I was WAY too low, it turns out (Ma always said I was an over-achiever! ) and that was causing electrolyte problems. So now I eat a balanced diet of 30% three times a day. I get certain amounts of water in my system by certain times of day and that helps, too. I get enough sleep and take dang good care of myself. I eat pizza, I dance and skip, and I am constantly in a good mood. It must be annoying to all of my neighbors.

    I am just writing in to give you some hope. It's not meant to brag. I am still with you all in my heart. What we have been made to suffer is beyond words. Our very dignity is often gone. But there is a God and He is there for you. I have heard people say on here before "I hope you find health as I have" and I have thought in the past that that would not ever happen to me. But there are options out there for each of us. I hope that one of them works for each of you, and that you figure it out soon. Mine was the VNS. It seems scary to people, but sometimes you have to risk everything to keep everything. In my case, I had nothing to lose and everything to gain. A year later, it seems I have gained back my life. I thank God every day.

    Thank you so much for all of the support and the love that has been directed my way throughout this whole ordeal. This board has kept me sane so often. If you have nothing else to be thankful for, be thankful for each other. You all have the strength to fight this.

    Thank you, thank you, thank you. While I have not met you, I truly love you all.

    Sincerely,
    Jenny

    http://www.menieres.org/forum/index.php/topic,25724.0.html
     
  7. james

    james ''Everywhere I go there I am'' GS

    STÖTA
     
  8. Coach M

    Coach M New Member

    Jenny-Glad you are doing well.
     
  9. SweetTater

    SweetTater New Member

  10. Henrysullivan

    Henrysullivan New Member

    This is great now to be posted in the Data Base. There are success stories out there, folks who have beaten Meniere's. So this will provide an archive for those contributions. Thanks to James for the idea and thanks to Ray, oh...for many things.
     
  11. scribbledot

    scribbledot New Member

    Hi guys,
    A while since I’ve been here. Just wanted to share something that perhaps will help other as it did with me. Over a year and a half ago I started taking hayfever tablets ( anti histamines ) as someone on this site said it worked for them and at the time had not much to lose by doing so. Since taking them I haven’t had a dizzy episode ( rotational vertigo ) which I might add was a daily event. I don’t have full on hayfever but do have a post nasal drip and what it does is dries up the mucus that is clogging up my eustatian tube allowing my ear to “breathe”. I tried a couple of brands at first with no success until I tried the 24 hour Claratine brand. If you want to try it don’t give up if the first brand doesn’t help. One tablet should be enough to know if it’s working. You have to find the right one. My ear started crackling again when I swallowed or yawned after taking the claratine something which it just did not do before hand. Since the vertigo was impacting on my life daily I noticed a change quickly with the pressure easing and generally feeling more normal. Days went by, then weeks, now a year and a half with no vertigo . I’ve had meniere’s for over 10 years gradually worsening over the past five to the point where nothing helped .. (not even muscle relaxants) until I started taking this. BUT I’ve found it does no good unless I stay away from the triggers ( bugger! ) I’ll outlay them here. You may have your own.
    Keep sodium under 1000mgs a day
    Predominantly gluten free... I find the gluten creates excess mucus
    No veggie oils. I use only olive oil
    No milk products
    Grommets did help me with the vertigo, well the first one did anyway. The second one I had trouble with blocking up all the time and it popped out after only 7 months. I believe what’s happening here in my case is the ear can breathe so the air pressure in the middle ear is normal and not effecting the pressure in the inner ear. Another thing I find helpful is to be aware of the tension in my jaw and try and keep it relaxed. I Believe that if I had done all this at the start of this disease I would have saved my hearing and a lot of suffering. I’ll just add I take the claratine every day and a half. If I leave it around three or four days my ear begins to feel full and the dizziness starts to come back.
    I hope this helps someone else. It kinda gave me my life back. But as it is with this disease who knows how long that will last.
    Scribble
     
  12. Angelea

    Angelea New Member

    James requested I post a copy of my previous post titled "Gentamicin Experience" here for those looking for success stories. I am not out of the woods yet, though. Just today, exactly 37 days after my first gent injection, I had a pretty significant episode of imbalance that in the past would have been a full-blown vertigo attack. I have felt the buzzing and increased hearing loss several times in the past month without experiencing any problems with dizziness or vertigo until today. I managed to make it through my kids' two soccer games and a piano recital with help from Valium, but am thinking this might start ramping back up into vertigo. I have not given up hope though. I will call my doctor on Monday and schedule another injection. Given the history with getting in to see him, I imagine it will be 3 weeks or more before I get in. He gives quite a few of them and said in his experience the average number of injections his patients need for permanent relief is 2.5. So still have wiggle room for success. Keeping my fingers crossed. Here's my older post:

    As I agonized over my decision to have a shunt placed vs. getting gent injections, I read studies and many, many posts on the subject on this website. I know how much it helps to read the experiences of others, so thought I'd share mine.

    Briefly, I've had Meniere's for one year now. On average, I was experiencing 2-3 attacks a week for the first six months. An attack for me is preceded by pressure/fullness in my ear, then buzzing and worsening hearing loss, then vertigo which lasted anywhere from 2-8 hours depending on the severity of the attack, but always incapacitating. During this time period I took HCTZ 25 mg twice a day, followed a strict low sodium (<2,000 mg) diet, no caffeine, chocolate, or alcohol (so miserable!-all my fave foods and beverages), and I took 25 mg meclizine which usually kept me from throwing up. Also, tried JOH & NUCCA chiro. None of these things seemed to make a bit of difference, except maybe the pressure was a little worse if I accidently ate too much salt. But my symptoms were just completely out of control and I was barely making it to my part-time job or getting my 3 kids to their activities. My husband missed a ton of work.

    In November, 2009 I had a dex injection. I had one 12+ hour episode of vertigo the following 48 hours and then was almost vertigo-free. One month later, I had a second dex injection and had 100% relief until the 1st of February. Made it through the holidays, at least. Then the vertigo was back with a vengeance!! At that point, I was having 1-3 episodes every day. I could not go to work (I am so lucky I was able to work from home during that time during my vertigo-free hours), could not count on driving my kids to or from school and their other activities. I had 2 more dex injections that unfortunately had ZERO effect. My doctor, who specializes in, among other things, Meniere's, speculated that I had built up a tolerance to the steroid and would need higher injectable doses plus oral steroids. This was at the beginning of March, 2010. By this time I was fed up and didn’t want to keep trying this Band-Aid approach as it didn’t seem to put me in an extended remission anymore. I thought I had decided to have a shunt placed based on my research and the opinion of my “3rd opinion” doctor. Since this other guy referred all surgeries to my primary specialist, I went back to him to request he do the surgery. But he said that despite the studies suggesting that shunt surgery is >80% effective, he said that he and his colleagues actually noted only about a 60% success rate. I was deflated. I did not want to pussy-foot around anymore. I was missing my kids’ lives, not to mention my own.

    I feared gentamicin for several reasons. For the sake of space, I won’t go into the “whys” here. But it did appeal to me in the sense that it seemed to be a chance at a relatively permanent solution to the vertigo since it was a destructive procedure. My doctor eased my fears about the treatment and agreed that I had “suffered long enough.” So on March 25th, 2010 I had my first injection. My doctor uses the low-dose method, or Johns Hopkins’ protocol, of one injection every 3-4 weeks until a sense of imbalance is felt and there is no vertigo.

    After just one injection, I had my last episode of vertigo on April 5th. The next day I began to feel that sense of imbalance. It was similar to what I often felt after a good attack of vertigo, EXCEPT I had no nausea and it was unrelenting. Other than feeling like a giant bobble head, I felt GREAT! No way could I pass a field sobriety test, but otherwise I was 100% able to function albeit in a little bit of slow motion. I did not drive for about 2 weeks because there was a delay in my eyes following my head and with a lot of visual stimuli and the motion of the car, I did not feel safe to operate a car. But again no nausea and no spinnies. My hearing is probably about the same as before the treatment. I have about 40-60% hearing loss on a bad day. I am one month from the injection and my balance is almost normal. I went back to work this week, am driving, and living life again.

    I still feel the buzzing and sensations in my ear that accompanied my vertigo attacks, but no vertigo. I appreciate that it could come back, as apparently the hair cells can regenerate – or at least that’s the theory. But I would have another injection in a heartbeat. Even if I felt the off-balance sensation the rest of my life, it is so much better than the vertigo. I still take 25 mg of HCTZ once a day, not sure why. Might help with the pressure, but that has improved over time. Falling barometric pressure makes my ear pressure far worse – definite correlation there.

    For the record, during the last month of my vertigo I finally asked for a prescription for Valium (diazepam), plus the doctor gave me a prescription for Scopace (oral) and, between these two meds, I was SO much more comfortable during my vertigo attacks and could actually sleep through most of them. Wish I had had these since the beginning.

    I am sorry for the long post, but I hope it helps someone out there to get their life back and to feel HOPE. It’s still early in my disease and treatment, but I am so grateful for any relief and I have HOPE that even if the vertigo comes back that the gent will work again and help me manage this pain-in-the-butt disease.

    Angelea
     
  13. Stanley Searra

    Stanley Searra New Member

    -endolymphatic sac decompression..I had this done and i have not had any attack for two months...All that i can say is thank you God for giving me back my life....I have a few small attacks but the are very small...I can go out with my family now without fearing that i might get an attack..........
     
  14. nwspin

    nwspin New Member

    I was asked by a few members to post my ESD w/shunt surgery . I also responded to an email by a new member who asked me to tell them my experience with the surgery. Below is my response to that request.

    I had the ESD w/ shunt surgery on 4/15/09 and have been vertigo free since. I did not rush into the surgery because I wanted to explore all the non-invasive treatments before I went with any kind of surgery.

    The surgery and recovery for me was fairly easy, I was walking out of the hospital 1.5 hours after they rolled me out of the operating room. Pretty amazing, but I hate hospitals so the sooner the better for me. I was of course in some discomfort, not much but hey they just cut my ear off and drilled a hole in my head. They put a compression bandage on the ear that you wear for the next 24 hours; it looks like you have a bowl on the side of your head. I was home recovering for 10 days before I went back to work, I should have taken a full 2 weeks off but I was extremely bored at home. The key to your recovery is rest, rest, rest and when you’re not resting, get up and walk around the house, not strenuously but you need to get the blood flowing to help the healing process.

    The doctor warned me I might get some vertigo the first 2 weeks after the surgery, there is a lot of swelling inside your ear and inner ear and until everything settles down it could interfere with the functioning of the inner ear. I did not have any vertigo but I remember I stood up quickly once and was light headed so I was careful about getting up too quickly.

    You will experience a lot of different noises and sensations during your recovery (total recovery could be as long as 6-12 months), this is normal as the inner ear takes a long time to heal from the surgery. You will be able to function normally but the popping, hissing, etc lingers for a while. I know my Eustachian tube took about 4 months to finally get back to normal, it would keep closing and opening causing pressure in the middle ear but like I said it eventually went away.

    My hearing before the surgery was pretty bad, both in volume and speech recognition and this continued after the surgery. At my 6 month post surgery appt with my doctor my hearing had not improved at all and we talked about hearing aids. Two weeks later my hearing suddenly came back, now I am at pre-Meniere’s levels. Like I said earlier, the ear takes a long time to heal and in my case it took 6 months and 2 weeks for the hearing to come back. Before the surgery because of Meniere’s I always had fluctuating hearing until about 6 months before the surgery it went south permanently (or so I thought), now my hearing does not fluctuate at all.

    So for me the surgery was the right solution, it did what it was supposed to do and time will tell how long it will last.

    I must say though even though we have had a lot of forum members that the shunt surgery was successful, there have been a few members that it did not work. This could be for many reason, the surgery itself failed (bad surgeon, clogged shunt, etc), the swelling of the Endolymphatic Sac was not the cause of their vertigo, etc. I know of 2 members that the shunt did not work. Vikinggal had it done but still had problems, she found out after the surgery she did not have Meniere’s; she had MAV which was causing her problems so the shunt wasn’t going to do any good anyway. Skye’s shunt surgery failed and she had the VNS done and when they removed the nerve they found it was damaged causing the bad signals from ear to her brain, again not Sac related.

    I think people should explore many different treatments before they go the surgery route although you should not wait too long for results. I think I waited too long to have the surgery but I was trying to find a non-invasive treatment that would work for me but it came down to nothing else worked and my quality of life was nonexistent and my livelihood was threatened.

    I was lucky to have an excellent Neurotologist who helped guide me through the treatments and agreed to let me try the nontraditional treatments. When I first met him, he told me 80% of his patients were treated successfully by lowering their salt intake and taking a diuretic. Then most of his other 20% of his patients had success with steroid treatments. The ones that didn’t respond to those treatments and all the other causes of the Meniere’s symptoms were ruled out, were greatly helped with the shunt surgery and if that didn’t work the last resort was the VNS or Laby.

    The low salt & diuretic seemed to work for the first 2 years but then Meniere’s hit me with a vengeance for the next 2 years. After unsuccessful Dex injection treatments I tried other nontraditional treatments such as John of Ohio’s regime (antiviral) and Upper Cervical Chiropractic amongst others. Even though these treatments, which I still do, did wonders for my overall health, they did nothing for my Meniere’s symptoms. After nothing else worked I went to my doctor to say it was time to have the Shunt surgery done.

    The surgery has given me my life back. I did ask the doctor how he considered the surgery a success and he told me if it eliminated or reduced the number & severity of the vertigo attacks then it is a success. It doesn’t cure everything; I still have tinnitus and balance issues which I believe are from the 2 years of horrific attacks but I have no more vertigo and my hearing came back, a big success for me.

    I hope some of this information helps you in your search for a successful treatment. If you decide to have the surgery, let me know I will give you some pointers pre-surgery that will help you through it all.

    Best of luck,
    Mike
     
  15. Angelea

    Angelea New Member

    I see you are bilateral. Did you have bilateral surgery? I suffered badly for most of one year, but held out doing anything "invasive" or destructive because I was afraid of becoming permanently disabled. Then my doctor pointed out that I already was disabled. At that point, I had stopped driving more than a few miles and could not make any commitments to anything since I didn't know if I would have vertigo or not on any given day.

    I am still very happy with my choice to go the gent route. I have been perfectly vertigo-free for 2 months now. I have very minor balance issues, mostly if I turn too fast. My hearing, unfortunately, is worse and I have constant, low-buzzing tinnitus but I forget about it most of the time. My word recognition is terrible, so I am going to look into being evaluated for a hearing aid.

    I am so, so happy for you! :) I seriously considered shunt surgery, too. But my doctor warned me, as you also know, that over time the shunt "could" become clogged and have to be re-done. As I had responded intially to IT steroids then had them stop working, I didn't want to go through that frustration again. Though it would have been nice to preserve my hearing.

    I agree 100% with what you said about the fact that certain treatments don't work for some people because they have been essentially misdiagnosed. I found that to be a frustration in reading some studies on the outcomes of gent and shunt surgeries, as I wondered if misdiagnosis was the reason for some failure rates. Oftentimes studies did not distinguish b/w MAV or other know causes for Meniere's-type symptoms. I even read one study that found that nearly 100% of people who failed gent injections were found to have adhesions on their round window. Once those were removed, all subjects responded to further gent treatments.

    There is hope out there, but it takes patience and a good doctor. I appreciate doctors' desires to be less invasive and avoid destructive procedures, however if you're having vertigo to the point that you cannot live a normal life then I think we as patients need to be more assertive and find a doctor willing to guide you to the next step. I had to make it clear to my doctor over a period of months that I had a very poor quality of life, but once he understood then he was very helpful in guiding me to make a decision about the next step.

    Take care all!
     
  16. nwspin

    nwspin New Member

    I only had surgery on my left ear which is the one that came back with a vengeance and gave me so much trouble. I was bilateral from the start but the right ear hasn't been any trouble since Dec 2005.
     
  17. gmcdnh

    gmcdnh New Member

    I don't post here much and I'm not on this forum very often but I wanted to post my story here because it is very similar to Angelea's success with the gent shot and just wanted to share my experience with it. I was diagnosed with MM in May of 2007. I've lost 80 percent of the hearing in my left ear, have severe ringing and roaring, and was experiencing 2 to 3 vertigo attacks a week. My ENT in New Hampshire (where I live) put me on a low salt diet, a diuretic and meclizine and valium for the vertigo. After 2 and a half years and several treatments of steroid shots that did not work she said there was nothing more she could do for me and she referred me to Dr Steven Rauch at the Mass Eye and Ear in Boston (who happens to be one of the leading experts on Meniere's Disease). Last August I went to see Dr Rauch and after doing many tests and reconfirming the diagnosis of Meniere's he spoke extensively to me about my options which included shunt surgery, gent shots and laby. I chose the gent shot because it was the least invasive. I had the shot that day. Over the next 4 weeks I was very wobbly, dizzy and my balance was very bad and I had to use a cane and could not drive, however, Dr Rauch warned me that this would take place before things would get better. He told me that he has a 75 percent success rate with his patients who have the gent shot of long term or even permanent relief from severe vertigo. I'm happy to say that I have been vertigo free for 8 months now. Dr Rauch did tell me that there is a possibility of relapse within the first year and if that were to happen I could have another shot. I did have a very minor episode last week of feeling a little "off" but nothing since. Before the gent shot, I wouldn't go anywhere or do anything. I was literally housebound. Now I get out more and do more things. Dr Rauch helped me so much, more than I could have imagined. He did tell me that my left ear was basically gone (he told me that before my gent shot), so, I'm very grateful to him because he has given me a better quality of life that I thought I had lost and for those that say conventional medicine doesn't help, well, it helped me. I'm really glad that some of the treatments on this forum have helped so many people, but, I don't have the financial means to be able to afford what it would cost to purchase everything I would need to try these other methods. I am on several medications for other ailments and can barely afford those, so, I do the best I can.
     
  18. Joanne5170

    Joanne5170 New Member

    LIFE IS GOOD


    IN 2000 I WOKE UP ONE DAY TO SPINNING FOR HOURS NO BALANCE
    VOMITING. I SUFFERED LIKE THAT FOR 2 YEARS IN AND OUT OF THE ER NEVER KNOWING WHEN MY NEXT ATTACK WOULD COME LIFE WAS OVER.

    DOCTORS HAD ME ON MEDS MEINETTE BOX TOLD TO GO FOR THE SHUNT WHICH I FELT WAS NOT A CURE SYMPTOMS ALWAYS RETURN


    FINALLY I GOT TO THIS SITE AND FOUND GUYS WHO WERE CURED
    WHO HAD A VNS. I CONTACTED DR. BRACKMAN AT THE HOUSE AND
    EAR CLINIC IN LA HE SAVED MY LIFE HE TOLD ME THAT I WOULD
    BE PERMANENTLY RID OF MY VERTIGO. HE WAS RIGHT

    I HAD MY LAST ATTACK ON MAY 2 2002. I HAD MY SURGERY MAY3, 2002 8YEARS AGO. I AM NO LONGER HANING ON THE COFFEE TABLE
    WHILE THE ROOM IS SPINNING 100 MILES AN HOUR AND I AM CRAWLING TO THE BATHROOM TO VOMIT.

    THAT ALL ENDED ON MAY3, 2002. I HAVE EXCELLENT BALANCE ABSOULTELY NO DIZZINESS OR VERTIGO I WORK GOT MARRIED HIKE
    ICE SKATE LIFE IS GOOD.
     
  19. Stanley Searra

    Stanley Searra New Member

    endolymphatic sac decompression.. i HAD THIS DONE ON THE 14/04/2010 I was going like a Boeing then yesterday i had a big attack and my head has been spinning all of the time.... It only has a 70% success rate and i guess im not part of that 70 %..This sucks big time as the constant spinning has come back with a bang... Im so disappointed as i thought i was cured of this disease..What to do next ?
     
  20. Angelea

    Angelea New Member

    Stanley - That is so dissapointing! I know exactly how you feel. My first two dex injections worked beautifully, then the next two, nothing. When the vertigo came back, it came back with a vengenance. I went the gent route next (my story is above) and have absolutely zero regrets. About a week after the injection, I started feeling like a big bobble head but I was 100% able to function and had no nausea whatsoever. It's hard to describe the sensation, but it was a million times better than vertigo. I did not drive for about 2 weeks b/c my eyes seemed to track slower than my movements, but that passed and now, 2 months later, I only notice some very minor imbalance once in awhile. Since I'm not a tightrope walker, it's not a problem. ;-) No vertigo! I am living my life 100% back to normal, though my hearing is a bit worse so I am going to look into getting a hearing aid. Unfortunately, that's a risk that goes along with the gent.

    Sounds like VNS might be another good option to try.

    Good luck to you!
     

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