I was diagnosed in January and my doctor wants to performs surgery. Has anyone had the Endolymphatic sac decompression, and the Endolymphatic shunt surgeries. How envasive are they and did it cure your vertigo? Did you lose all of your hearing?
I had the Sac Decompression in 2013- had great results. It took about 2 weeks to feel 100% but it’s a fairly easy surgery. I had to have a revision last Nov and had a complication of a CSF leak. I have had several issues since. But overall the dizziness has been good even with the complications. It’s a hard decision but I would recommend it if it’s the first time, but I would not do a revision.
Yes! I had the shunt surgery in 2014! It worked great for my veritgo,but I still have a lot of dizziness! I just finished the 3day medicine forgot what it's called! The surgery is not bad at all, I was having vertigo everyday! My hearing is not good,but it wasn't good anyway. I would do it again if I had to! Let me know how you are doing! Praying for you!
Im glad it went well. What is a CSF Leak?
M doctor told me that the shunt surgery isnt guaranteed to work. Im so concerned because I do not want to go thru this twice.
One of the risk is they can cause a cerebral fluid leak. The Dr nicked my dura which caused the leak and I had a reaction to the packing. Which in turn caused mastoiditis.
WAIT A MINUTE, Marie!! Why in the world does the doctor want to do surgery so soon on you? You have only had MD for 4-5 months...I know that vertigo is a terrible experience but what's the rush? What else have they tried first...have you exhausted all other options? Have you tried modifying your diet....NO salt, NO caffeine, NO alcohol? Have you been on diuretics? Have you been on Betahistine? Have you had intratympanic steroid injections? You should have tried all of these BEFORE considering invasive surgery. I'm not a doctor but I've had MD for 40 years and have a pretty good knowledge of the various treatment protocols and the order in which they should be tried. I know for sure that surgery is NOT the first one to try. I suggest you see another ENT....one who is a neurotologist which is an ENT with sub specialty in inner ear diseases. Please do NOT do the surgery before second opinion. GOOD LUCK and let us know what you decide.
This doctor is my 2nd opinion doctor. I am on diuretics, and Betahistine. Also just had my 2nd steroid shot yesterday. He just wants me to know my options. I have changed my diet watching my sodium intake which is very hard quit drinking coffee and I dont drink alcohol,and trying to reduce my stress levels. My doctor just wanted me to know that the next step probably will be surgery. Believe me I don't want surgery but my vertigo and tennitus is so bad I cant sleep which triggers the vertigo. Im afraid to drive anywhere so my quality of life is shot. I am trying to decide which is my best options so I thought I would try this forum and ask people who have had the surgery. My ENT that I saw actually referred me to this Doctor. I am open to all suggestions on what to try next.
What have you done? have you had surgery?
Hi dbmarie3,
I had a surgery to remove some of the bone to make more room for fluid sacs to expand. The were going to add a shunt or remove bone and chose the latter. I did not lose more hearing nor did I get any back but I do not have vertigo any longer but I still on a low sodium diet. Although I still have fullness it is nat as bad as it used to be.
I also use cbd oil drops if I feel the slightest bit dizzy.
I had the shunt surgery last July. I believe it helped my Menieres, although I still have some vertigo, tinnitus and hearing did not improve. It seemed to shorten duration and frequency of attacks for me.
Every one is different..........everyone has different reactions to things. Don't take what you read on here as medical advice......just people's experiences.
I wish you all the best.
OK...thanks much for clarifying your treatment history....now that we know you have tried other treatment protocols let me ask you these questions:
1. what dose of diuretics are you on? Some patients require 50 or even 75mg/day to notice less vertigo. Have you tried a higher dose?
2. What dose of betahistine are you on and how long have you been on it? 16mg/3X day is usually the minimum dose to be effective against vertigo although many folks need higher doses. Have you tried higher doses?
3. how long have you been on betahistine? It usually takes 4 or more weeks before you notice improvement.
My belief and my neurotologist's belief is that all benign treatments should be exhausted before any surgery. If you have reached that point, Marie, then several surgical treatment options exist. I have NOT had the Sac surgery so I can not comment on that. I have, however, had Gentamycin injection surgery which was totally successful and I highly recommend it. If you want more info on this type surgery I'd be glad to tell you more about my experience....just let me know.
GOOD LUCK in your decision, Marie. Whatever it is I wish you the very best.
Like with any surgery, think twice before you go through with it. I have never been a good surgery patient so I only will have surgery if I have a life threatening issue. Just remember that no surgery is a miracle cure and thing could go bad and things do go bad. Sorry to be a Debbie downer but once you touch something, there is no going back. Good luck with what ever choice you make
Hi, what is that exactly do they di? I had a stapadectimy over 20 years ago. Is it something like that? It worked for a long time and no longer does. I am having exploratory surgery in July to see if it’s causing my problem with vertigo. Do you get vertigo?
I am taking Hydrochlorithyazyde (sorry if spelling is wrong) 50 mg. Betahistine 16 mg.3xs a day. Been on meds for about 2 months. I just had my second injection yesterday is that the Gentamycin injection that you are speaking of? I believe thats what i had with steroid.Yes please tell my about your experience on your experiences thats why i joined a forum. Im all new at this and need more information on peoples experiences. So your injection has lasted how long and how often do you need to get them?
Thank you Tanney.
I am a little leary of that surgery. My doctor said I probably will feel off balance the rest of my life with that. How you feeling? How is the recovery process after surgery?
I am thinking more than twice. Surgery is so invasive I really am exploring all options
I have had no balance issues after surgery and the recovery was non eventful. I did go off of my low sodium diet for about 3 weeks and the ear fullness came back. I also notice the barometric pressure affects the fullness. Even a small change down will cause a fluctuation but it is not a show stopper.
arax, dbmarie,
I agree surgery should be a last resort. I tried one gentimyacin injection and it didn't take. I tried steroid pills and a dieuritic and low sodium diet and hated the side effects and still had an attack. I did the surgery looking for a cure and of course that didn't happen but it is better than it was.
Hi Tanner, what is the gentamicin injections? Ive had a stapadectimy over 20 years ago and now it doesn’t work. Doctor thinks it’s loose and has caused a tear or hole in my ear. I’m choosing exploratory surgery in July , dr says I may loose the rest of my hearing in that ear but to me if it stops the vertigo it’s worth it. My hearing has dropped so much already in that ear. Maybe from my strokes I don’t know! Just know I have to try something can’t live like this anymore. Not knowing if your going to get vertigo or not!