I had this done in 2012. No vertigo after about 3 or 4 days! However, have increasing dizziness and head pressure that is truly quality of life altering. Wondering if it ever stops working or 'fails'? My doctor says 'no' and it will never be 'removed'. And that I will never have vertigo again. The dizziness/head pressure he has no explanation for, just that I am one who unfortunately has these symptoms.
yanksgirl Maybe this will help, this is from Dr Hain's site: http://www.dizziness-and-balance.com/disorders/menieres/menieres_placebo.htm Endolymphatic Shunt -- slightly effective ? The endolymphatic shunt is used by some doctors hoping to relieve pressure in the inner ear. It involves opening up the endolymphatic sac, with the thought that this may reduce pressure in the inner ear. Generally, opening up the sac also does damage to the sac, so this procedure may actually just be a method of damaging the sac (see below). Shunts are often recommended by otologic surgeons (Kim et al, 2005). Unfortunately, while the shunt would seem to be a logical thing to do, in most studies, the shunt procedure does not appear to be better than doing nothing (e.g. Silverstein and Rosenberg, 1992), or doing a sham (placebo) surgery (Bretlau et al, 1981; Thomsen et al, 1981, see references below). This lack of effect may be because the shunt can easily get plugged up, because what it is treating (hydrops) is a symptom itself rather than a cause of symptoms, or because the whole concept of the sac being a drain is just wrong. We favor the first and third explanations. Similar to shunt surgery is endolymphatic sac decompression surgery. This is a process where an ear surgeon drills bone around the area of the sac in the mastoid bone. Again, we advise against this surgical procedure. We do not presently recommend this procedure for our patients except in very unusual situations. These may include a person who has perfectly normal hearing, or an older person who might not tolerate the gentamicin procedure described above (Pensak and Friedman, 1998; Gianoli et al, 1998).
Vicki, thanks for this website. I'll look at it. It has worked for me, as I say, in that I don't have 'vertigo' anymore! That is the real 'plus in this'! But, I do want to hear from folks who have had the 'shunt' insertion and how they are doing since--like any dizziness/etc. Or if Vertigo has returned or if they have had it removed? I was told the gentamicin injections were not advised for Meniere's. Seems doctor's definitely differ on this! And I am in the category of 'in the elderly'!
I had shunt surgery in 1994. It was a horrible experience. I woke up with vertigo and double vision and still had it when they sent me home four days later. After about a week, the vertigo settled down, but I had all the same problems you've been dealing with. I returned to work for one day and the second day, as I was in the shower getting ready for work, I had a vertigo attack and it was all downhill from there. I had vertigo every single day, and that is not an exaggeration. The attacks didn't last as long and the spinning was slower, but I had several attacks a day. I couldn't go anywhere by myself. I lived that way for about 11 months and then had VNS surgery. Everything was fine and dandy until I got it in the other ear several years later. No way, ever, would I have shunt surgery in my unoperated ear. I was told you can't have the shunt removed because it would be too hard to find. Hard to believe, since that area is so tiny, but that's the story I got.
Before engaging in any treatment or procedure, Meniere's patients should be prepared to ask their healthcare providers (general practitioners, ENTs, etc.) the known efficacy outcomes of such things? "Doc, you recommend that I get this particular drug or procedure. Fine. Tell me, what percentage of your Meniere's patients are actually helped by this?" Be highly suspicious of hazy, generalized answers such as, “Well, this procedure is used often in cases like yours.” Or, “This is your best chance of success.” No, those don’t answer the question. What percent of those who had this drug or treatment in your practice got relief? Frankly, the majority of physicians simply don’t tally or analyze such info. Their only self-perceived goals are to a) diagnose, and then b) treat. Whether or not the treatments actually worked is not so much assessed, recorded, analyzed, or presented. It’s a failing of contemporary medical practice in the US (and most other countries, too). Why is it unreasonable for a patient to expect an evidence- and outcomes-based answer to the “How will this work for me?” question? “Oh, we don’t keep track of outcomes in this office. We just know they are as good as any medical practice. Please have confidence in us. We are the professionals. We know what we are doing.” (But not how well the patients are doing a year after all the drugs or procedures, sadly.) I’m not a physician (but a trained biologist). I do attempt to assess and quantify the numbers of successes and failures with my John of Ohio Meniere’s Treatment Regimen, determined by Internet postings and personal emails from regimen users. Right now I have 267 personal records from regimen users. 32 have reported that the regimen brought them no useful relief; that’s an 88% success rate. The anecdotal postings of people who have had the shunt surgery don’t seem to approach that success rate at all. It appears that a large number, if not a majority of shunt procedures fail and hydrops (fluid accumulation) resumes unabated — after much expense and discomfort. Just what does a failure to state documented or recorded efficacy rates say about either a drug or a procedure itself, and the medical professional prescribing or administering it? –John of Ohio
So you had your shunt done in 2009? Mine was in 2012. And--by symptom free, do you mean--no vertigo or completely symptom free of any type of dizziness/head pressure, etc. I don't have vertigo--but the daily feeling of bad upper head pressure and dizzy feeling.
So, what did your doctor say as to 'what is next'? Do you still have vertigo? When was your operation performed? Thanks for your comments. We need to 'compile' our answers and show them to our doctors. Are you doing anything else for your symptoms?
John--you are 'so right'. It seems the answers doctors give are the ones you mentioned. Very frustrating! Mine did the surgery at my 'request' when I got so bad with vertigo. He doesn't believe in the injections in the ears--nor anti-virals (says all blind studies he has been a part of--and he has been involved and studied many) do not support the use of the OTC 'cures' nor the anti-virals! He also said, the shunts 'don't clog' and 'no, that he does not ever remove one'! So--if by chance one does stop functioning--or gets clogged. Guess you are just stuck with it. Sounds pretty dismal to me!
When was yours done and if you don't mind--was it done by a Neuro-ent or just an Ent? I do think the skill of the surgeon has alot to do with success or not! When did you have yours? Do you have vertigo again or other symptoms or both? Thank you for your input. We all need to hear all we can about what helps and what doesn't and if so--how much it has or has not helped. What are you doing now for relief? Thanks
Honestly, i don't see any point in fixing the damage caused by a virus without addressing the virus itself. In a lot of cases, those of us who have found 100% relief with antivirals also report return of hearing, etc. My balance is now better than it's ever been in my life. I can do things that i could never do before, which leads me to believe that the virus was causing damage long before the vertigo ever entered my life. Of course, if antivirals don't work (at the recommended doses by Gacek, and after having tried ALL the antivirals), then i'd consider surgery.
The thing is if your doctor says Meniere's is 'not caused by a 'virus'! He says he's involved in many blind studies--and that they have not shown this to be true. So you have different doctor's (and many are very good in their field--mine is supposed to be the best in the area) and associated with a major teaching hospital--Barnes-Jewish, and Neuro/ent. So you'd think he is involved in many studies. So--for those who have been helped by anti-virals, that's wonderful. I tried them--and no good results. Dr. Gacek even told me to stop them as they were not working for me. I emailed him and got his dosage and got my internist to prescribe them for awhile. So, I'm so glad they work for some--especially the ones who get relief from vertigo. As I said--the shunt surgery 'took away' the vertigo--so far, almost 4 years now. But no one has an explanation as to why I have awful upper head pressure, loud tinnitus off and on and balance issues increasing.
I'm sorry they didn't work for you. What antiviral did you take? What brand? Generic or brand name? What dose and for how long? Did you try lysine in combo with it? I personally would not call it a failure unless I had tried all the antivirals and brand name at max dose for six months, but that's just me. Some work better for some people than others. And I'd fire my doctor if he said it's never caused by a virus. There is no other explanation for the 90% success rate with antivirals that we're seeing at multiple centers. Of course, he'd much rather charge big $$ for surgeries than script out antivirals.
I would think with a plugged shunt, there would be vertigo. I know they can get plugged, though, or dislodged.
Cheryl--I see where you had yours many years ago. Did you ever have to have it removed? seems that is a question most say cannot be done--or just won't be done. And I would think that the surgery itself has improved since 1994--when you had yours if I remember your post without checking back on it as I'm typing. I was only in the hospital overnight and only then due to anesthesia concerns. I had a vertigo episode about midnight that night--got Valium given to me and Zofran for nausea. Had a couple of minor vertigo episodes the next few days but no vertigo since 2012! I specifically asked my doctor if it could possible get 'plugged or etc. He said 'no' and to my question as to having it removed--said it would stay with me until I'm 'gone'. So--whom are we to believe when the best of doctors seem to disagree? All we know is we have quality of life altering--symptoms and try to explain them and get help--and I can only guess the 'answer' is just not there or if it is, it isn't the same for everyone--obviously not! Thanks for you response.
yanksgirl, did you always have the dizziness and imbalance after the shunt surgery, or is this a recent development? Did you have any time after the shunt that you were symptom free?
I have had the head pressure prior to developing full blown Meniere's with vertigo, etc. After the surgery, I was basically taking it easy and with 'no vertigo' I think the dizziness was hardly something I worried about--thinking it would 'go away' too. But, it has not. I attributed it to depression/anxiety--due to dealing with the ongoing symptoms, and at times would get relief during the day. But for the most part it was 'there' before and after the surgery. I tried the Valium at night and morning--then tried anti-depressants and can't tolerate 'any' that I've tried--and have tried several. So, only Xanax (low does 1/2 at a time) and no more than 2 a day, has helped deal with this. But---the head pressure (not ear pressure everyone talks about--but upper head pressure, and louder tinnitus in the affected ear, and the feeling like one gets when they get up suddenly and go 'whoa' and feel like they will 'pass out' and are off balance--is with me all the time when I'm upright. Sitting back in a recliner--or lying down eases it but it's back as soon as I'm up for a short time. Sometimes the pressure is so bad I feel like my eyes will 'sink back' into my head. All this I had with Migraines years ago--thus the diagnose of 'silent migraine syndrome' by a couple of Neuro doctors I saw. Then I developed hypothyroidism and it has some of these symptoms so I was 'elated' that it was found and now being treated and my numbers are good. But--my balance issues due to the head feeling like it's 'full' and the dizziness and pressure--continues. Right now as I'm typing, I feel really bad--will go sit back awhile. Just got a shower and feel like this after alot of movement--cleaning house, shopping, most anything. Need to sit back often. Sorry this is so long but trying to give a better picture.