Going out of my mind - And considering shunt surgery. Help?

Discussion in 'Your Living Room' started by DizzyKay, Apr 27, 2014.

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  1. DizzyKay

    DizzyKay New Member

    Oh this blasted disease, how wonderful it is.

    Normally I'll get an attack and I'll be sick for anywhere from a few hours, to few days. Lately, it's every single day. I haven't felt "normal" in almost two months. The vertigo attacks happen every few days, maybe once a week. In between though, I'm lost, confused, stumbling, just completely out of it. I can't hear what people say, and even when I do I feel like I can barely comprehend what they are saying anyways. I just chuckle and nod my head and hope it fits the context of whatever came out of their mouth. I'm stuck in an eternal brain fog. I can't function normally at all. I try, I try really really hard. Most people don't notice, they can't tell I'm in this fog, but inside I am really struggling.

    I'm taking diuretics prescribed by my ENT, as well as valium for when I get vertigo (I think it helps, but I honestly can't tell if it's coincidence or not), and started taking the JOH vitamins but honestly I have a hard time remembering to take them in the afternoon and at night because I'm so darn out of it all the time.

    Because I'm in a constant state of super-Meniere's-extra-fun-time, I'm out of work on unpaid disability. Which sucks. A lot.

    My ENT recommended the shunt surgery to me. He was very honest and said it may not work, it may damage your hearing, etc. etc. but that if I am this ill with no help from medication, it could be worth a try. Now my real question for those of you who have had the surgery; has it only solved your issues with vertigo? Has it rid you of the evil "brain fog"? That is what bothers me the most, and I'm not sure the surgery would be worth it to me if it didn't help with that, as that is my most troubling symptom.

    Any other success/failure/general stories/info/experiences with the shunt surgery would be greatly welcomed and appreciated.

    I'm really glad this forum is around. Thanks guys.
  2. Nancyr

    Nancyr New Member

    Kay, I know nothing of the shunt surgery, but I know how you feel...that horrible brain fog..and clients sitting at my desk and I got 1/2 of what they were saying if that much...horrible horrible horrible. I Feel so bad for you...no one knows how you feel like the good people on this forum. Please stay with the JOH. About 6 weeks ago I was at the point of saying I was getting over my menieres for awhile..I had been on the regimen for sev months.. then the cedar pollen hit big time in Oklahoma and my good right ear started roaring, I was getting back my vertigo and some brain fog...I was furious and worn out...wasnt getting on this forum either, but 1 eve about 6 weeks ago i did and found out that JOH had an update, well i increased dosage as recommended and am finally doing better, please try again, as this is an easy and fairly economic way, and stay in contact with this forum as there are so many good ideas, I do not contribute often but enjoy reading of others triumphs...you are in my prayers
  3. recentlydizzy

    recentlydizzy New Member

    First, I am very sympathetic to how you feel. I hate this freaking "brain fog" my vestibular expert asked me to described my "brain fog" and the best words I could come up with was a general feeling of malaise. I am having a very difficult time with it all myself. I was down for almost three days straight due to lightheadedness and nausea. I have been off work a while now and thank goodness I was able to just stay in bed.

    I had a sudden burst of energy so I kicked butt today. As I type this I have a lot of ear and face pressure hopefully nothing more will follow. I expect to take my meds and call it a night because at this point medicated sleeping is the only comfort I have. Hopefully your good day is coming soon! And a bright spot for you is at least your ENT is helping as much as he or she can. Mine pretty much said he didn't have anything else for me.
  4. yanksgirl

    yanksgirl New Member

    Can you describe what your symptoms are that you refer to as 'brain fog'? I have what I think is that too a lot of the time, but wonder if we're all referring to the same type of symptoms?
    Also, I had the shunt surgery--2 years ago. No more vertigo since the first week following the surgery. I do struggle with 'brain fog' as I understand it to be, and the last few months really bad daily nausea from mild to intense and 'head (not ear) but head pressure upper portion inside. Saw my ent and he said I 'won't have vertigo anymore', my hearing is the same--no better no worse. I have two hearing aids and only one ear is the bad one but the aid helps. Am very discouraged with the dizziness/nausea thing (recently posted about it) and Xanax helps the anxiety but I do think, may add to those symptoms. I do hope you make the right decision for you. Please know we are pulling for you! Keep us posted. :)
  5. nicmger

    nicmger New Member

    I described it to a coworker as: It's like thinking through quicksand, every thought takes effort and is a struggle.
    I couldn't think of a different way of describing how it "looks" like I am here and functioning (and I am) but I am not doing it at normal levels and clarity during those times. Thankfully, I am in a "good" period right this second. Yes the pressure is there, but mind feels clear and not sluggish.
  6. yanksgirl

    yanksgirl New Member

    I 'so relate' to all of that description! really gets to us! :(
  7. DizzyKay

    DizzyKay New Member

    Thank you all for the advice and kind words. I'm doing my best to stay positive and beat this without getting invasive - but the lack of progress is starting to bring me down. I'm trying to keep up on the JOH vitamins, my memory fails me during the day though and I forget to take them. I think I should start setting alarms on my phone or something.

    Yanksgirl - it is disheartening for me to hear you have had the surgery and still struggle with "brain fog", though congrats on not getting vertigo anymore! What a relief that must be. As for how I would describe the fogginess, I'd say it's kind of like when you wake up too early and can't quite focus on the world yet. Groggy, confused, unable to comprehend common things, in general just thinking very slowly. Like nicmger said, thinking through quicksand. Everything takes effort and is very draining.

    I have an apt with my ENT next week to do another hearing test, and to discuss some more details of the surgery. My hearing has dropped significantly in the last month. I don't know if it's permanent or not. It's all very scary honestly and leaves me feeling quite down a lot of the time, so I really hope I can find a solution, soon.

    If anyone else is reading this and has had the shunt surgery - I would love to hear your experience with it. Also, if anyone has found anything to help with this blasted fog!

    Thank you!
  8. HappyGrace

    HappyGrace New Member

    I'm at the point where my doc says shunt surgery is next option for me, but I've been doing some researching on here and not finding a ton of long-term success stories with it. Also, that the recovery time is greater than you'd think, etc.

    It's hard researching on here though because you mostly read of the people that things DIDN'T work for because they are the ones that come back needing more help! The ones that it does work for seem to go about their lives and you don't hear about their success!

    I also would be interested to hear about shunt surgeries from anyone! Unless something changes (and I'm running out of options), I suppose I'll have to try it and see if I'm one that it works for!
  9. nicmger

    nicmger New Member

    Most recent studies/reports that I have found (as of 2013) indicate a 50-75% success rate. I have come across a few different blogs and reached out to one person who had the surgery 6 years ago. His doctor, was in Indiana, told him 80-90% success initially; but 20% may fall back after a year or two. My specialist in WA when I lived there said it was 50/50. The person that had his blog (updates it at least annually with his status!) told me that it took him about 6 weeks to feel 100%.

    For me, if my doctor would agree ("you aren't that bad yet" they say) I would go for it. Even a 50% chance would be worth it to me! Even if it came back in 2 yrs (hopefully it wouldn't) if there was 2 years of freedom from this thing it would be awesome.

    With regards to the recovery, my thought process is that even if it was 6 weeks - when my cluster attacks are occuring, I am miserable and often not able to walk/function during those periods so nothing new. Fortunately I still have one "good" ear that seems to help me balance - and I have hallway walls to bounce off when I am off balance. LOL

    Good luck!!!
  10. Donamo

    Donamo Guest

    To the poor souls above on this thread, I wish I could take some of your troubles away. One thing you may want to try that is easy to do and doesn't require permission from the doctor gods is mega Vit C.

    I was in bad shape last summer and started mega C and it worked, no more vertigo or brain fog. I think it got my life back good enough until I could get my hands on antivirals. I will copy and paste my notes from that time below. The "H" and two numbers is from the lowest frequency and 2nd lowest, in my bad ear. 16,16 would be essentially perfect. Currently I am 11, 16 which is good enough.

    BTW, the Lypo-shperic Vitamin C was a bad idea because it is a sodium salt. After I stopped it, the results improved dramatically from those shown below. I have not had a vertigo attack since.

    There are some interesting books on the power of Vit C. Most other mammals can make their own, but we, and ginea pigs I think, lost the ability somewhere through evolution. That's why ginea pigs are used in experiments in some cases because other mammals can up their Vit C and zap the infection.

  11. HappyGrace

    HappyGrace New Member

    Donamo-amazing timing-I just started megadose C today!!!! My gut feeling is that the virus is raging (I am on valacyclovir but the dose doesn't seem to be enough for me), plus I know C is a histamine blocker for seasonal allergies, which I think is a problem too.

    Question: I've already been taking 6000 mg/day for a couple months-that's as high as I could get w/out reflux/stomach acid. So now I got a sustained release C, and it has taken me 33000 mg so far today (3000 mg taken every hour or half-hour)and I'm not at bowel tolerance yet! (lots of gas starting though :)) Is that because it's sustained release?

    Also, in the last half-hour my tinnitus has increased to worse than it's ever been-pretty sure it's related to the C fighting the virus!!

    Now, am I understanding that tomorrow I decrease to 75% of BT and stay at that for maintenance dose? For how long? Thanks! (i've read the whole Vitamin C database thread and Ray's thread twice!)
  12. HappyGrace

    HappyGrace New Member

    Also, Donamo-are you still taking the megadose C?
  13. Donamo

    Donamo Guest

    I see Aug 9 and 10 I was taking 40 grams but other days around 24. I pretty much took as much as I thought I could handle. Maybe you should stick at your 33 for a couple of days. It is definitely not pleasant when you go over the limit. Also try to spread it out over the 24 hour day.

    Keep the windows open! :)
  14. Donamo

    Donamo Guest

    No, once I got feeling good, I slacked off. I did pretty good on AVs with moderate C but now I am doing SSTP - I, as we all, would like to say "I'm cured!". Right now I feel very good, I just wish I could share my "feeling good" with you guys.
  15. HappyGrace

    HappyGrace New Member

    I think I'm approaching BT soon-I hope, anyway!

    When you say you slacked off, about how long do you think you stayed at 16-24 mg, and when you slacked off, are you saying you went down to maybe 10000 mg/day? And what was "moderate C" for you?

    You're lucky you can afford SSTP-I would do that in a HEARTBEAT if I could!!! Glad you're feeling well!
  16. Donamo

    Donamo Guest

    Well, unfortunately my notes get sketchy when I am doing well. I think I kept up the moderate dosage into mid October then I just kind of forgot about it.

    Yes, I am lucky to be able to afford SSTP, I'll be luckier still if it works!

    Looking back through my notes reminds me that I wasn't in very good shape not all that long ago. A reminder to count my lucky stars. When you are feeling good, it is so easy to forget the bad times and feel like you were always like this.

    As far as the money goes, my wife and I had a software business with programs I wrote. We were so busy, working 7 days a week for years and years that we didn't have time to spend the money! That was forced saving. It was crazy but fun too.
  17. HappyGrace

    HappyGrace New Member

    Thanks, Donamo. I pray SS will be what works to make you feel your best ever!
  18. nwspin

    nwspin New Member


    I was asked some question about the shunt surgery I had 5 years ago by another member in a PM. Here is the link that they read in the Database http://www.menieres.org/forum/index.php/topic,25041.90.html You'll see my success story about half way down the page (NWSPIN).

    And here is the answer to the questions they asked. Hope this helps.

    I can understand your apprehension on any invasive treatments. Shunt surgery is the least invasive for the treatment of Meniere’s. As I have posted before, the ESD w/ Shunt (Endolymphatic Sac Decompression with Shunt) has worked very well with my illness and continues to do so 5 years after my surgery on 4/15/2009.

    If you decide to have the surgery make sure you bring someone with you to the appt with the surgeon (I’m assuming it will be your Neurotologist) to ask pre and post surgery questions. Make sure you write these questions down before you go in so you don’t forget.

    A) As with most surgeries the night before prep is pretty important. I have had many surgeries so I can speak from experience that the rule of no eating or drinking the night before your surgery should not be taken lightly, it really helps if you have no food or fluids in your digestive system when you come out of the surgery, i.e., it helps with the nausea.

    B) Tell them to make sure you are not laying flat during the recovery; make them prop your head up. I would get dizzy if I was laying flat. When you wake up from surgery you will have what they call a compression bandage over your ear, mine was like a small bowl with a strap going around my head. It makes it difficult to wear glasses over so use an old pair of glasses.

    C) Wear a button up shirt; it makes it easier to go over your head.

    D) Most shunt surgeries are day surgeries; I was walking out the door about 2 hours after the surgery was done. Some doctors may have you stay overnight.

    E) I would recommend making meals ahead of the surgery so you don’t have to worry about fixing anything for yourself. I recovered at home by myself so it was real helpful.

    F) Like any surgery you will have recovery times in stages. The first stage of course is the initial post-op. You might feel just fine after the anesthesia wears off like I did, I watched a baseball game on TV with my mother after the surgery. By the end of the game I had come out of the anesthesia fog and was feeling fine. The next day I felt like I was back to “normal” as far as the Meniere’s goes, I even worked 6 hours telecommuting. The 2-5th day was a little different. The post-op swelling peaks about day 3-5 so I was feeling the effects of that. Your ear feels weird and strange sounds. The pain for me wasn’t too bad; I was only taking half does of the pain medication and was off it by day 7. I went back to work after 10 days, working part-time but I should have taken more time off. You just have to remind yourself your body needs the rest to heal and it takes time.

    G) Make sure you get you post-op instructions before you go into the surgery. Ask questions like how long before I can take the bandage off. The Ear Cup usually comes off the next day after the surgery but I wore it at night to protect the ear. Don’t be afraid to call the doctors office after the surgery about any questions. Usually you will get a nurse that handles most post-op questions.

    H) Vertigo & Dizziness: I was told to expect some dizziness or vertigo post-op while the ear was healing. There is a lot of swelling in the inner ear after the surgery which can affect everything. I fortunately didn’t experience any vertigo or dizziness. You cann also get dizzy by getting up too quickly due to the medications, both antibiotics and pain medication so don’t freak out it could be medication related.

    I) The surgery wasn’t any better or worse to recover from than any other surgeries I have had. Of course you are on guard looking for any signs of the vertigo coming back. I only have tinnitus now, no fullness, hearing loss or vertigo.

    Now with that said, there are many reasons why the surgery may be unsuccessful. Bear with me this may be a little long.

    My doctor didn't think my hearing came back because of the surgery since it took so long after the surgery. But if your hearing is affected by increased Endolymphatic fluids then draining those fluids could restore your hearing, just like after an attack I would have. I was pretty typical/classic Meniere's. I would start to lose my hearing while pressure was building, then came the vertigo, relief of pressure and then hearing would come back.

    I would have to disagree about the failure rate of the shunt. My doctor has had very good success with the shunt surgery. He does not just rush his patients into it, we tried a lot of different things without success and the shunt was just the next step. It is a lot less invasive than the VNS with a lot less complications. Plus I am bi-lateral so VNS or Laby was basically off the table for now.

    He explained to me that a lot of shunt surgeries fail because of these factors:

    1) The patient never had Meniere's but something that mimicked the same symptoms. Look up vikinggal011's case, she had the shunt surgery, it failed only to find out she had MAV instead. She ended up controlling it with the right medications. Make sure you get a correct diagnosis, get a second opinion if you have to.

    2) The surgeon has little experience performing these types of surgeries. Make sure you get a surgeon that has performed hundreds if not thousands of these surgeries which my doctor had and find out his success rate.

    3) The patient’s body kept building scar tissue or other anomalies that just made the surgery fail.

    I was fortunate to have a doctor that was very experienced and skilled at these types of surgeries, he also does VNS & Laby's. I am fortunate to have a pretty classic case of Meniere's and lucky that my body was agreeable to this type of surgery.

    I tend to look at it this way, if you try the surgery and have some measure of success with it then you are on the right path. If it fails at some point after bringing relief for a period of time than you should have confidence a VNS or Laby will be successful. I would be a little hesitant to cut out a functioning part of my body only to find out that it wasn't the problem. Can you image what vikinggal011 would have felt if she had just jumped into a VNS or Laby to find out it was unnecessary? It is a personal decision though and one that should not be taken lightly. Hopefully I have answered some of your questions. Feel free to PM me if you need any other information. I hope you find success.
  19. GLA

    GLA New Member

    For what it's worth, I had shunt surgery performed in the early 90's (Dr. Daniel J. Franklin, Houston, Texas), and I had TREMENDOUS results for 20+ years. I had already incurred some hearing loss on that side, but outside of that I was symptom free following the surgery until late 2013.

    Sadly, since then, I went bilateral and the symptoms did eventually return. Still, I'm sure anyone here would gladly accept 20+ years of relief.

    Good luck, and always know there are people here who understand what you're going through.
  20. sirlanc

    sirlanc New Member

    Sorry about your frustration, but please consider the depth of suffering does not impact the odds of a procedures success, before you decide please read the bellow thread


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