Have visited the MAV website and noticed that they have a success story section.Thought it might be helpful and inspiring to add one here.A lot of people do get better and often disappear.It would be nice if people could post what has helped them, as a source of information to Newbies and to the rest of us. For you Newbies,Terms that people use that you may find useful: MM - We usually abbreviate Meniere's to this. MAV - Migraine Associated Vertigo VNS - Vestibular Nerve Section-The balance nerve that goes to the brain is severed. Laby - Labyrinthectomy- a surgical procedure that destroys the structures of the labyrinth JOH - John of Ohio,A treatment regime involving vitamins and supplements Serc , Beta Serc - Also know as Betahistine, A drug that is given in most parts of the world however not in the USA,only with a prescription and filled at a special compounding pharmacy. NUCCA- National Upper Cervical Chiropractic Association Gent - Gentamicin, a type of Antibiotic that is injected into the ear to kill balance nerves Dex - Steroid injections into the ear Acyclovir - An antiviral drug Valtex - An antiviral drug,given for the same reasons however it is believed to better cross the blood brain barrier.Also usually more expensive than Acyclovir Shunt - Endolymphatic Sac Decompression surgery to decompress the excessive fluid within the inner ear chambers Lysine- A big part of the JOH regime BPPV -- Benign Paroxysmal Positional Vertigo http://www.earsurgery.org/site/pages/conditions/menieres-syndrome.php
Originally posted by james in the old Database. http://www.menieres.org/forum/index.php/topic,25041.0.html
This was my original story from 2010. It has been 5 years now and things are going quite well. The surgery is still a success. From 2010 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
I have Meniere's since I am 13 years old. My first attack lasted 2 weeks! Doctors basically told me nothing can be done. I would have vertigo attacks several times a year and daily dizzy spells and poor balance. I got sinus infections a lot and would get sick very easily. Back in Oct 2012 I got a sinus infection and inner ear infection I could not get rid of. Daily vertigo attacks and severe dizziness for months. I searched the internet and found these forums. Then in Jan 2013, 47 years after being diagnosed with MM, I tried acyclovir after finding these forums and reading posts and the studies about it in the forums database. I have been vertigo free Since Jan 2013, I get sick a lot less often and do not have daily dizzy spells and my balance is much improved.
Huhu Newspin i know ist a whilea ago u answer in that Forum but i will try to ask you. whars about your Hearing now? you said it came back isit still ok? and if yes did you still have ear pressure?
Yipeeeee!!!!! I finally get to post on my own thread! I have always looked forward to posting something on the Success story thread that I started on the old website that is in the database. Whether I am in remission or cured or burned out I don't know, but I will say that I have had no vertigo since Feb 14 of 2014. That last one was the worse one that I ever experienced. Others have also said that the last one that they had before entering remission was quite severe. I will give a bit of my story and try to remember all that I have done to lead me to this post. You can also do a search on my old threads. When the vertigo hit the last time I was out in the suburbs at a home improvement big box store. A friend and I were on our way back to the subway when I got slammed out of nowhere. I popped a sedative and almost dropped to the ground. After a bit I thought I would try to walk as we were in the middle of nowhere, walked back,mostly uphill and I sat on a square before going into the subway. Sat down again on the inside of the subway building. Went down to the train and had my sunglasses on and tried to relax and breath. Got off the train and immediately started throwing up. How embarrassing. Made it upstairs to take a bus to my home. I can't do this,we got into a taxi and then got stuck in traffic. Finally made it back to my flat and then proceeded to throw up for around 10 hours. I lost about 2 kilos from this experience. The next day I was to guest teach in another city,I have always been strong in facing this stupid condition and was determined to show up. My BF went with me,it went well but I was exhausted. What I did next was stop taking any and all supplements except for Vitamin c ,I still take between 3 to 6 grams a day. I also take Magnesium Citrate daily. I remember reading that fasting can cause the immune system to reset it self. I also remember SS saying that we don't want a super charged immune system but one that is in balance. I also tried my best to relax and release negative thinking. I had come to the conclusion that most of us are in a heightened state of awareness with our bodies and environments. Listening to every little tick and sound in our bodies. Which is understandable as we no longer trust our bodies due to MM. I decided that this constant monitoring was just creating more tension in my body that I did not need. Like anything else it is a learned skill. I am still not great at it but am better at letting go and having the attitude of screw it-I know that I can handle whatever it throws at me,that I will get through it. I also meditate daily have for about 30 years and could not do anything without the love and support of my BF who is a source of strength and encouragement. I am lucky to be living in Sweden where we have excellent medical care. I will list all of the things that I have tried that helped me and didin't. I started out on SERC which didn't do anything except keep me on the thinner side. I tried anti virals they didn't do much for me. I did NUCCA which did help but did not cure me. I did JOH lite,not taking everything but also other supplements that I thought might help.I also tried acupuncture and had my first drop attack about a week later but had also actually started with a diuretic at about the same time which lasted about 3 days as I could see that was not for me. I wanted to avoid any invasive surgeries. I finally went to a neurologist and this was key to my recovery I believe. I went on Verapamil which helped a lot right away. I started at 120 I think but now take 360 every day. I also started taking Amitriptiline and at the highest was on 50 mg a day. I am now down to 25mg and hope to get off of it if things continue to go well. The next piece of the puzzle for me was getting a mouth guard for TMJ. I have a fantastic dentist. She then suggested Botox which I now get every 3 months,this has also helped everything immensely. I am also very lucky in that my BF is a shiatsu therapist and he gives me lots of treatments on my head and neck. I remember praying can I just get through 1 week without any vertigo or dizziness,I remember the way many here may be struggling now and want to give some hope. I didn't mean to write a book but wanted to put all this down as it may help someone else. I have received so much support and help from the people on this forum. It's not as active as it once was and many people have left but it is still here. If I was new to MM I would start getting treated for migraine and see what happens. My ENT who has been with me since 2008 has now moved on to another hospital,I spoke with her recently and she says that there is a new Italian doctor working at the old clinic who believes that Migraine can cause MM. I am going to try to get an appointment with him and will post if I find out any new theories. My original diagnosis was Atypical Menieres- which basically means they don't know what it is or that it is migraine related. I had a history of migraines from the age of 12 until my 30s when they stopped. I no longer get the headaches but now get visual auras,I am getting around 1 a month right now. I had 3 drop attacks early on. All I can say is that I thought I was having a stroke,heart attack or was dying. Very scary. I had progressive hearing loss in my right ear which suddenly speeded up and now both ears are affected. I have had periods where I lost the hearing in both ears,also very scary. Have been on steroids numerous times. I also saw a reumatologist as my sister has an auto immune disease. I tested borderline. With this doctor I tried a round of imnosuppresive drugs which made my hearing worse. I never get much ear fullness but have lots of tinnitus in both ears. It comes and goes,some times it is like a couple of jet engines. I just try to ignore it and do something else. My right ear is almost deaf now. I have a hearing aid in each ear which also has helped immensely. I probably have old posts about that lying around somewhere. Just not having to strain to hear has reduced a lot of neck tension that doesn't help anyone with MM or MAV. I resisted for a long time getting them mainly due to vanity and not hearing well with them,I recommend the Starkey models the open fit so what you can still hear enters the ear naturally and the sounds you can't hear as well are amplified. Like lots of people and as someone has said -a perfect storm can be created or something might push us over the edge to get the MM or MAV ball rolling so to speak. For me it was job related stress. Incredible stress from job and home restructuring and here I am in a foreign country,etc,etc. So that's my story so far,I hope this post although long might help someone. James
A great post on Gentamicin injections from Marc-here is the link http://menieres.org/talk/index.php?topic=945.0
I've been vertigo-free since April of 2015. I take two teaspoons of Lauricidin (a brand of monolaurin) 3 times a day with meals. Prior to that I did the JOH lite regimen (L-Lysine, Vinpocetine and Lemon Bioflavonoids) for two years which helped to greatly reduce the frequency and severity of my attacks but I was still having about two attacks per month. Once I began taking Lauricidin my attacks completely stopped and it's now the only Meniere's related supplement that I take daily. Lulu
My best relief came from gentamicin injections. I just had my second one. I was doing well after one low dose, but then I started getting mild vertigo. Went back for one more magic bullet, as my doc calls them and I am feeling great. Every day is better and better.
Four ENTs and two Otoneurologists told me that I had Meniere's and four 15 years I believed them, but when treated for MAV, have gone 11 years with two vertigo episodes: one 11 years ago and one recently during a severe migraine headache. My long but I hope informative post is hopefully linked below. If not linked, hopefully you can copy and put in as URL http://menieres.org/talk/index.php?topic=2194.0
Thought I would pop back in. I ended up having 3 injections, but so far I am living a normal life. Other than tinnitus, I do not have any MM symptoms and I eat and drink whatever I want. Live is good.
I know this is an old thread.... Thought I would share my success anyway. - Diagnosed with MD in 2007, lived with the vertigo. Had occasional spells, but nothing I could not live with. Once in a while had to take a sick day from work. - Seemed to go dormant for a year or so. Started up worse than before in 2010. Hearing getting worse, more frequent vertigo episodes. - Started seeing another doctor, was considering options (eg. gentamicin) when I had my first drop attack. - Doc wouldn't let me drive after that. I decided I needed to be more aggressive in treatments. - We decided on VNS surgery, since the hearing in the ear was serviceable. - Had another drop attack day before surgery, so I knew I was doing the right thing. - Had surgery in fall of 2010. - Things we OK for a while. I started to have some minor symptoms again in 2013. - The vertigo attacks were not as bad, but I could tell that all was not well. - Had a drop attack in March. - Went back to doctor and discussed plan B. Decided to go with laby surgery, no way I was going to live with the fear of drop attacks again. - The concensus was that the first surgery did not sever the vestibular nerve entirely and some strands were able to grow back. - Had surgery in May 2013. - I have been completely symptom free ever since. Surgery is a radical step that not many consider. But in my case it was the right thing to do.