would you?

Hi everyone
just wanted to ask if you would still ask the ENT doc to do a sac decompression if the dizzy spells are a bit better. i have have had a good two weeks but this week i feel a bit foggyalthough no real dizzy spells. (thank Goodness) I am due to see the ENT doc at the end of this month and need all the advice you can give. hope you can help me again Thanks
Ali from accross the pond in Edinburgh

 

Personally, I would never allow any surgery. this is something you need to weigh for yourself. Choices we make are very personal and we all travel a different road when it comes to treatment.

If I were you i would take the road of least resistance since nothing comes with a guarantee. Try every conservative treatment first.

I know of those who had it and years or months later had frequent attacks again.

I haven't had any surgery and am bilateral and on meds to control it all.

Best of luck with your own choice.

 

seems like a chance to take. I too have read about folks who have had the procedure, enjoyed some time free of attacks, but then it all was for nought. I hope you find some relief.

 

Ditto what dizzjo said (except I'm not on meds).

 

I have a similar attitude to Joyce, Paul, and Linda: it is best to be cautious.

Years ago, I had developed Graves disease and the doctors were about to irradiate my thyroid gland in an attempt to lessen its output. Fortunately, I told that that I was feeling better about 2 days before the procedure was to be performed and that I would not allow myself to get irradiated without another blood test. The blood test showed that my thyroid gland had finally come out of its overdrive mode and was showing signs of returning to normal.

The moral is: don’t let yourself be railroaded into something whose time has not yet come. Make sure that there are good reasons to proceed.

Joe

 

Hi. I have had sac surgery, and 2 revisions. The sac surgery "cured" me (not really of course but took away every symptom) for 3 years. The revision lasted 2 more when I added the meniette (felt much better but not as good as the first surgery) and the 2nd revision did not work. I think it mildly alleviated my symptoms. I am for surgery if it can help. Of course every surgery has a risk. The main thing in my mind is to be with a surgeon who does these all the time and has a good reputation. I am so happy for the relief I got. I had the surgery when I was having almost daily attacks and could not function well anymore. I would do it again and have no regrets. From my own research and what I have read here, I think it's pretty much accepted that sac surgery is mostly not a permanent fix but can help a lot. My own doc says that sometimes it is all a person needs. The research that I have read seems to suggest around 3-4 years of longevity for sac surgery. It would be good to do your own research. Saying that, there is someone on here who had about 20+ years of relief that posted not too long ago. I think he was an exception. I had exhausted all treatment options when I did this, and am glad I did. Make sure you ask him/her about the risks as well as the benefits. Good luck with your decision. Lisa

 

No surgery for me either, i take the med route with acupuncture.

 

If you're just dealing with the dizzies, I wouldn't recommend surgery. I had endo shunt surgery done over a year ago, but I was dealing with major dizzies, some vertigo, nausea and fatigue on pretty much a daily basis. Of course I don't know how dizzy you are, but if it's not too bad, I think I would try everything else first.

Bob W

 

I would use surgery only as a last resort. I read too many stories about surgery that hasn't worked. I haven't had surgery and don't intend to.

 

Ali,
I have had the surgery, but it was at the doctor's discretion. He should know what to try next. You might tell him/her that you are willing to be aggressive in combatting this disease. That could help the doc know your willingness, but I wouldn't request it. If it is suggested by the doc, ask lots of questions. Like his success rate, how often he has to redo them, what percentage of his patients does he suggest this too, what to expect, what if it doesn't do what is expected....

 

thanks to everyone for there help/advice. The ENT doc suggested we go for an op which would have him open up the back of my ear and put in a big dose of gentimicine.I beleive he said it would wipe out the balance system1!!!! when i posted this last time everyone said it was a bit much!!!!! i then researched and came up with sac decompression However i am not having dizzys everyday now down to once a week for the last two weeks but i know it is not away!!!!my fear is that he will discharge me if i do not go for the op he has suggestd and i am really worried that the attacks will come back again on a daily basis. I am on medication but as i said it is only in the last two weeks that i have had only one dizzy spell a week which means going to bed but feeling tired and foggy the rest of the time and my eyes are still jumping about daily!!!!!! i will think long and hard about any surgery but it just feels a bit overwhelming!!!!!!!!
Thanks again everyone
take care
Ali from accross the pond in Edinburgh

 

Hi Ali, I have a question. When I had sac surgery, they opened up behind my ear also, and "cleaned" that area of bone, tissue, blood, and carved away some bone since it was unnaturally small. Currently, I am getting a VERY aggressive treatment, gentamicin, injected into my ear through a tube. This is supposed to kill the nerve cells. It is likened to chemical surgery. These are two very different procedures. The gent is a more end of the road option. It can destroy your hearing so it has to be weighed carefully. I have never heard of them putting gentamicin behind the ear. I would ask him to really clarify. THEN also do research so you really understand it all. This really made me comfortable with making a decision. In the end the doc suggested it but I decided. Also, I hope your doc will give you room to wait and be sure. I hope there is no pressure. Won't he continue to see you on an ongoing basis? I agree with Rev, I did this when I had very bad daily issues. Only you can decide. Good luck, Lisa

 

Ali - this sounds like a pretty tough spot you're in right now. IMO, feeling pressured to get the surgery isn't a good reason for getting it. I hope you do lots of research on it and if you then decide it is right for you, then I would suggest going to someplace that does the surgery on a regular basis - where it's more routine than someplace that only does it occasionally. Meniere's is a very ephemeral disease and there's no telling where it might take you. It could get worse and it could get better.

Good luck

Bob W

 

Hi lisa & Bob thanks for the info Lisa i think the op he described is the chemical one i now only have 10% hearing left in the ear that is affected so he i guess he feels that there is nothing to loose. However i just feel it is a bit drastic and if the sac decompression can help me i would be willing to give it a try!!!!!! if it does not then i guess i would need to consider his option then do you think that is reasonable!!! i respect that everyone is different and we all have to make our own choices but to sdo that we need to get info and that's why i posted the question on the board. So thanks again for the advice and i hope you both keep well.
Ali from accross the pond in Edinburgh Scotland

 

Hi Ali...I know I have found help and it wasn't from an ENT. I found a chiropractor who adjusts my atlas bone and then "needles" for 10 minutes and it has given me my life back! I hope this helps..."twinkle" from Texas

 

Hi Ali -

The thing that worries me is this surgery typically only gives temporary relief. It's major surgery right next to the brain. All of my doctors advised against it. I guess I'm saying to think about it and give it serious thought before proceeding.

 

Hi Ali, I guess you are asking for my opinion and - I don't know!! I'm glad I did the sac surgery first. My opinion was to always do the less invasive procedure first. While all surgeries carry risk, the sac surgery was presented to me as one of a more minor nature. I've had it 3 times too. Sometimes I think reading this board, you hear of all the negatives that can happen and get almost terrified of trying anything. I know there are a lot of people here who are anti-surgery, I am not one of them. But I was in a very bad state when I did have the sac surgery. I couldn't function normally. I could get out once in a while, but not on any scheduled basis. I am glad I had it...for me. I had no side effects, but I am with in my opinion a very top doc and surgeon. This year I decided to have the gentamicin injections. The vns sugery and laby surgeries are next to the brain and have the most risk for sure. The gent I know could have left me with deafness and permanent imbalance. I guess it says how bad off I was to go for this. The gent is like a chemical VNS. For me, I decided it was worth the risk. It actually has improved my hearing (happens in some cases but rarer) and so far has improved my life so much, but I don't know how long lasting this will be. They say it works 80% of the time. It can work for years and then stop. It can work for decades. I have no regrets about doing it. I'm happy I did it. Saying this, I never thought I would do this, was very against it, but after 14 years my symptoms had really worsened. And for me, it was time. It is very important to know the risks, though. Do you trust your doctor? I also felt I had exhausted all other options. I had tried: allergy medication, diet, sac surgery, the meniett (which gave me great relief for a year and a half and is something you should consider), steroids, use diuretics and valium. How long have you had MM? When I first had it 5 days of steroids would often kick me into a year of remission. The last few years I've had little relief, after the meniett stopped working. I hope that this has helped. Sometimes I worry that people scare others away from surgery when it can be a great help to them. Don't be too afraid of it, but saying that, the VNS, laby, and gent are very serious steps and can have serious recovery involved, and permanent repurcussions. Gina, a fellow friend here, has had a very rough time after her surgery and after about 6 months is still struggling. Others recover well and do fine. The best I can offer is to be very educated about it yourself, and then make the decision with the help of loved ones and your doctor (if you really trust him!!) I had my husband go to the doc with me and help me research. This really helped as he was not emotional about it like me and really comforted me with our long discussions weighing the pros/cons. There are videos here by Dr. Rauch in the database- I found his 2 minute one explaining gentamicin invaluable. I also googled Gentamicin and Endolymphatic sac surgery and was able to read a lot about them on the internet. I guess the biggest thing people are trying to say here is to not consider surgery a cure-all. It can provide great relief for good or great lengths of time, but also carry risk that you really need to weigh in the balance. Best wishes, Lisa

 

Thanks Lisa, i will take on board all the advice you gave and the others. I have been reading Gina's story and it's a real shame she is having a rough time. I guess i have decided that i need to speak to the ENT doc 25th May and grill him!!! i know i need to make the choice and live with it!!!!!! but it is nice to hear from someone who went for it and got some relief. On saying that i have had one good week and counting so i am ever hopeful that by the time i go see him it will have passed again i think i have had it for about 6 years on/off but this last bout has been going daily for 6 months!!!!!!!!!and as i said it is only in the last week that i have been normal. Anyway just wanted to say a great big thanks and hope you keep well
Ali from accross the pond in Edinburgh (and it is sunny for a change yipee!!!!)

 

Best of luck, Ali, and enjoy the sun. The meniett is a great thing to look into also, it gave me great relief for a long time and has no negative health issues, because it works on delivering air pulses into the ear.....www.medtronic.com. It is a machine and not medicine. Very easy to use, 5 minutes 3x a day or so. There is also a thread discussing it on the first page here too you might have seen. Lisa

 

Thanks Lisa i will ask the ENT doc but i have never seen them in the UK!!!! although i could be wrong. i would def give that a try though it sounds like it can make a difference. Do you have to have an op for the tubes to be inserted? or can they just be placed in the ear by the ENT doc. Thanks again Lisa
Ali