Appt at Johns Hopkins – here’s what I found out...

Discussion in 'Your Living Room' started by Amethyst, Jun 24, 2008.

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  1. Amethyst

    Amethyst She believed she could, so she did.

    Hi everyone,

    Wow, what a day. I think I’ll need a little while to digest everything but I think you’ll all agree that on the most part, it was good news. Dr.Carey was able to make just about everything make sense, in terms of what I have and what is causing what, etc. When it came down to prognosis time I was a little taken aback by how definite he was: “you will be better within one year” – seems a lot to say when there’s a number of steps to be taken, but, if it’s even part-way true wouldn’t that be terrific?

    Warning: lots of information – some good info/stats but sorry for the long read.

    Since my testing ended early, I never had the chance to stop and consider any more questions to ask – I only had the one shot. I had been scheduled to meet with him again in the afternoon for another set of testing but it was cancelled. I had a VEMP test followed by a consult with Dr.Carey. The afternoon test was to be the 3D eye movement test. The reason for the last test was to look further into the possibility of Superior Canal Dehiscence (SCDS) as being the cause of my Tullio’s symptoms. After looking at the test results (today’s and previous ones), and talking with me, Dr.Carey has completely ruled out SCDS. It seems I can blame good ‘ole Meniere’s for the Tullio’s. What Dr.Carey had to say on the subject was very much what the Australian doctor had also explained to me recently (although my regular neurotologist didn’t seem to know). Tullio’s is more commonly caused by SCDS but on occasion it is a manifestation of the MM. It comes down to the Saccule. Meniere’s can reside within a few areas of the inner ear. He feels my issues are with the Saccule and the base of the Cochlea (directly below the Saccule). Apparently this explains the less common symptoms I have – ie. Why I have a Cochlear Hydrops dx, why so much hearing loss and so little true vertigo. He says that the Meniere’s doesn’t seem to be as much of a problem for me in the utricle or the semi-circular canals. Here’s a bit of what I learnt regarding the Saccule:

    • Instead of vicious vertigo attacks I experience much more of the elevator dropping, swaying boat, false motion type of dizziness. The Saccule is responsible for this type of dizziness.

    • When the Saccule is affected it can swell and touch the lining nearby, allowing sound to turn into vibrations which then travel up to my brain (don’t have the whole process down but that’s the gist of it anyways). This is the cause of my Tullio’s.

    • They triggered my Tullio’s symptoms while in the examination and no nystagmus was visible. Again this helped to rule out SCDS and support the basis of the Saccule theory – the saccule rarely causes nystagmus. When I have a Tullio’s attack I don’t suffer with rotational vertigo, instead I fall to the side and back. I also experience vicious back flip/forward flip type of false motion after a serious Tullio’s episode. Apparently this is also consistent with MM caused Tullio’s (vs. SCDS). Somehow the Autophony made sense to him as well but unfortunately I forgot to ask more questions on the subject (boy I wish I’d been able to come back for that second testing this afternoon, armed with any new questions I had). :-\

    • Meniere’s affecting the Saccule rarely translates into much vestibular damage (ie. ENG/VNG). He feels my recent test that revealed a 46% left-sided weakness cannot be trusted because of the effects Endolymphatic Sac surgery has on the test. It has something to do with the temp of the hot and cold water being thrown off because of the larger than usual cavity created by the surgery. Turns out a lot of my tests cannot be trusted since surgery. :mad:

    • Apparently drop attacks are also caused by dysfunction in the saccule. My two spontaneous falls (no sense of being pushed or pulled) are now diagnosed drop attacks.

    In regards of what to do to treat the Tullio’s/Meniere’s: Steroid Injections. He was big time into the steroid injections and if it weren’t for the fact that I’m here from Canada, on government medical funding with lots of paperwork (pre-approval stuff), he would have given me an injection right then and there. Dr.Carey spoke of a recent study that showed amazing results with Steroid Injections. He and my regular neurotologist spoke on the phone regarding the study because my regular doctor had thought Steroid Injections were useless. Apparently he now understands otherwise. Dr. Carey strongly recommends Steroid Injections for anyone with Meniere’s.

    Next topic: MAV ::) :-\

    Yup, I’m joining the ranks of MM/MAV’ers around here. Seems I have both as well. Dr. Carey indicated that research was shown a very strong relationship between MM and MAV. I have tons of paperwork here about MAV and here’s a stat I found interesting:

    “There is increasing interest among ENT physicians in the connection between Migraine and Meniere’s Disease. ....While the prevalence of migraine in the US population is 13%, the prevalence of migraine in patients with Meniere’s Disease is 56%, and the prevalence of migraine in patients with bilateral Meniere’s disease is 85%”

    I don’t suffer with what I’d call Migraine headaches, nor do I have any aura or any other visual signs. I do, however, have more and more headaches these days (to me they seem like they are brought on by the pressure in my ear). Here’s another excerpt from the paperwork he provided:

    “Migraine is an inherited problem of ion channels in the brain. This may result in what is best described as a “sensitive brain”. Most individuals exposed to loud noise, bright light, or excessive motion can adapt to these strong stimuli within minutes, but in the brain of a migraineur, the strength of the stimulus continues to grow until a migraine crisis occurs. This lack of ability to adapt to strong sensory stimulation helps us understand why so many patients have migraine headache or other migraine symptoms that can be provoked by bright light, excessive noise, strong smells, excessive motion, and painful stimuli.”

    I must say, this sure sounds like my experience. The literature also indicates that intermittent stabbing ear pain is often part of MAV. That’s one that has been bugging me for a while. In terms of what I’m to do to treat the MAV:

    • Of course, the dreaded elimination diet. I’m sure you all know about that one, I have the huge list of foods to cut out and I’m going to hate this, like I’m sure pretty much all of you MAV’ers do (but no way on this vacation south! It starts when I get home. In a couple of hours I’m going upstairs to the little free cocktail hour to enjoy red wine and aged cheeses while I still can!) ;) ::)

    • I was told to do 30 mins of aerobic activity per week. I explained that I do try and keep active but that I’m struggling with it. I do my yoga (gently) and I’m often out working in the garden – but no real aerobic workouts because of the dizziness. Dr. Carey recommends a stationary bike for people like me. Guess I’ll be joining a local gym.

    • My psychiatrist is being copied on the paperwork. I have to make major changes in my depression meds. Right now I’m on Zoloft and have been since the end of February. Dr.Carey was surprised that the Zoloft had not made the dizziness any worse; apparently SSRI’s often have a negative effect on MAV. Although migraine preventive meds were certainly brought up, he did not seem to suggest this until trying the diet and some other med changes first. It was suggested that I change to a Calcium Channel blocker first (Dilitiazem) and to consider an older type of Anti-depressant like Nortriptyline as well as a Beta-blocker (Propranolol). Lastly, anti-convulsants (Topamax, etc) were mentioned, and things like Neurontin. He said he likes to give the other meds a try first because the preventatives usually have a lot more side-effects (Dopamax :p)

    Sounds to me like there’ll be the usual trial and error in finding a med that works for the depression (MM/MAV related), as well as the MAV. That’s why I’m so taken-aback by the question of prognosis. I must admit, I started shaking and nearly went into a full-blown panic attack. It’s not the prognosis that bothered me – I love the idea that I might soon find some real relief - and with treatments that are very middle of the road/nothing to lose type stuff. My problem was the “one year bit”. You see, I’ve had so much pressure put on me in the past by my disability insurance company to get me back into my position that saying something so definite would mean that they’d be all over me again. Last time their pressure led me to making such a quick decision on sac surgery, when in the end it wasn’t even close to what I really needed, and will cause more problems in the future. Besides the testing issues caused by the surgery, he also let me know what I’ve heard many times here on the forum – the scarring could prevent gent injections from working effectively. Gent was brought up as an option after the steroid injection and the MAV diet/meds (they take a conservative route with gent – 1 small dose (different recipe, less toxic apparently than many )– and administer 2-3 at most, 3 weeks between each) . BTW, they also try to stay away from Gent, opting first for the Steroids. He really truly believes that I won’t need to go as far as Gent......but later said that I wouldn't likely not need to go as far as a Laby, that he's confident of the gent working. It’s these kinds of statements that left me rather perplexed – I mean, if it’s that easy to treat then why isn’t everyone having this done? We could all have our lives back with one good injection. Somehow it seems all too good to be true – is this a geographical issue? Is this just one more opinion and say, LA House Ear would have a whole different take on the big picture? Is that the cynic in me, or is anyone else thinking similar? My partner and my Mom seemed to feel the same way when they heard all the news. Great, up to the point of perhaps trying to be overly optimistic for my sake? Back to the disability insurance issue, I think we got that one cleared up fairly well – once I explained the issues around providing something definitive in terms of dates he backed off and said he definitely would leave out timelines and instead explain that he was confident that the treatments could bring me relief but in terms of timing it all depends on how quickly we hit on a combination that works for me.

    That brings me to a question I have: I’m pretty sure I’ve seen many MAV’ers here complain about how tough it is to bring the MAV under control, right? The paperwork provided certainly states that I’ll need to be very patient. That makes way more sense to me. I mean, I truly and honestly want to get better, and I feel good about my new prognosis, but it seems to me that it’s not as simple as it was made to sound today. For instance, here I am in Baltimore, loving the sites around here but frustrated at how bad the noise sensitivity is here. I can’t seem to manage anything. There are so many sirens around here and when they blow that horn of theirs I have a Tullio’s reaction, even in the comfort of my hotel room. We’ve visited a couple of restaurants and the National Aquarium while here but both were so hard to tolerate, I was often on the verge of tears (even going during off hours). So that being said, I struggle a bit with the notion of a quick-fix. I’d love to hear others’ opinion on this.

    Oh yeah, one more thing: Another item of interest, apparently the whole notion of hydrops is still very much in question. Dr.Carey stated that he does not like to use the word hydrops because they just aren’t so sure that that is the cause of Meniere’s. Wow, still a long ways to go in figuring out this bloody condition ???

    Amethyst
     
  2. June

    June New Member

    OMG! I am so thrilled by your first statement. I am so happy for you! Back to read the rest!

    I have read it all now. I can see how it would seem overwhelming. Sometimes good news is scarier than bad, because we are afraid of getting our hopes up, having done that so many times. I would look at like losing weight is for me. I start the diet, nothing, a half a pound (like that makes any difference), a half a pound etc and then one day my pants are falling off and I look to see if they are mine or DH's and they are mine. The little steps are imperceptible but they add up. I read it of course thinking of my own situation and wondering how much applied - a good bit I expect. I've defintely got this man's name jotted down. But on the confidence thing, when I got the relief from or at least during the time I took the antivirals, then after that, it seemed like medicines started to work, suddenly diuretic seemed like it might be helping, even flonase. Like someone else called it, layers started to peel away. I think maybe this is how it will work for you, nothing, nothing, better, better! Anyway I am thrilled that you have someone who does not feel overwhelmed by your atypical situation and you have a clear roadmap. Have a wonderful vacation at the beach!

    Ironically, I have just sent my records to Dr Derebery at House. I still think she may be a good fit for me all except the location because it seems like I am reacting to allergies. Did the subject of allergies or come up other than with regard to MAV? Johns Hopkins is so close for me compared to LA ... Is Dr Carey a non believer in the viral connection or did it not come up?
     
  3. jim1884again

    jim1884again advocating baldness be recognized as a disability

    Hi Amethyst

    thanks for taking the time to share all this
    it's really neat information
    guess I am one of the 15% of the bilateral folks who doesn't have migraine--have never seen a comorbidity figure that high before (but who knows?)
    do you happen to remember the source (name of author or particular title) of the study he cited saying how effective steroid injections were? I had them in '03 and they didn't seem to have any impact and I have seen mixed results in studies, but I have to admit, if a Johns Hopkins' MD says there is evidence, I really am intrigued--probably too late for me but if there is more recent solid evidence, it may help others

    as for your statement
    Is that the cynic in me, or is anyone else thinking similar?
    yes, there seem to be many different points of view in the medical community
    it is true that recently many MDs have begun to question the nearly universal role "hydrops" seemed to play--however, what then accounts for the 65-70% success rate we hear of when people get shunt procedures? I am very open to the idea that many other things cause symptoms, but I wonder if it might be too early to conclude hydrops doesn't play a role in many cases
    again, thanks for the info--would love to have the sources for the steroid study and the one that says
    "prevalence of migraine in patients with Meniere’s Disease is 56%, and the prevalence of migraine in patients with bilateral Meniere’s disease is 85%”--would love to read more about that
     
  4. LisaB

    LisaB New Member

    WOW....I am always so impressed by your brain, Amethyst, and the ability to hold all that information.
    I do think it sounds so promising and I am very excited for you. It is hard to know how he can be so sure, but my doctor was at every stage of the game of the next step, and although I resisted at times, when I went the way he suggested, it worked. I think some docs do have a good ability to know what will work. It is a bit confusing about the steroid shot being so good- I had one that did not help me, but then I never tried another. So who's to say? I think at JH they see some of the toughest cases and I have to think their expertise is so great. (I think there is a huge difference between a good doctor and a great doctor. I have experienced it)
    It is so promising to think you will be so much better, and I sure am going to focus on that! A year is nothing for all you've been through. One interesting thing is as my mm progressed, I was diagnosed with migraines. I don't think I had them before MM; my opinion is they were a side effect of my attacks, and my body being thrown around. They have virtually ceased after my laby. I get an occasional one but not near as much, and usually if I overdo the diet coke or have that extra wine, so probably preventable too.
    Having this focus on MM seems so promising, because if the steroids don't work (and they will!) there are more steps available. Don't be afraid to email him with your questions; your visit should provide followup answers as part of the deal.
    I am very happy for you and so hopeful. Thanks for sharing all this. When will you be able to get that first steroid shot? Hugs, my friend, Lisa
     
  5. June

    June New Member

    I follow your thought there Jim and it makes sense to me but sometimes after decades of the whole world believing one thing they find out another by accident like gastric ulcers are caused by H pylori and now bariatric surgery is curing type 2 diabetes before the patient has lost a pound. Sometimes, the conventional wisdom is totally logical and all wrong.

    You never know.
     
  6. LisaB

    LisaB New Member

    I wonder, do they think menieres causes migraines, or the other way around? For me, I think migraines were induced by mm attacks, as I've stated. Hmmmm............
     
  7. jim1884again

    jim1884again advocating baldness be recognized as a disability

    I love to question conventional wisdom but what got me curious is that many obtain relief from a procedure aimed at reducing the fluid--directly treating the hydrops--maybe the 30-40% for whom it doesn't work are the ones whose MM symptoms are not hydrops driven? again, I am open to other explanations--just thinkin' aloud here

    and Lisa B, we have had some discussions about this recently (migraine causing MM symptoms) and I don't recall hearing many people say MM caused the migraine but rather the migrainous activity in the brain caused MM like symptoms often mistakenly diagnosed as MM (we have several board members who have had this experience). But for all I know, there might be instances when whatever caused the MM symptoms, or as a biproduct of the MM symptoms, you get other migraine symptoms--have just never heard that, but that doesn't mean it couldn't be possible
     
  8. LisaB

    LisaB New Member

    Jim, that makes sense. I did rule out MAV and was told I had classic migraines. So I don't have an MAV tie. Lisa
     
  9. Amethyst

    Amethyst She believed she could, so she did.

    I'm so happy to see the back and forth discussion going on, that's what I was hoping for. I find it helps so much to decipher all the new information. It's great to have a number of opinions.

    Jim, I'll take a stab at your question regarding the Steroids study first. Here goes....

    All the information was flying by me so quickly that unfortunately I did not pick up the name of the study. However by looking through the following two pages of Dr.Hain's (through goggle search on "Johns Hopkins" and "steroid injections for Meniere's"), I believe that the study he referred to was one that was done in April of 2007. There is a decent bit of information on Dr.Hain's pages. I'm pretty sure it's the same study because I remember vaguely the results reported, the number of patients, and the fact that Johns Hopkins was involved in the research itself. So with that assumption clear (that I'm referring to the correct study), here's what I found of note:

    Reference to the study: Bolease MS, Santina CD, Minor LM. Longitudinal results with intratympanic dexamethoasine in the treatment of Meniere's disease. Abstract of the American Neurotology Society, April 27, 2007, San Diego. (http://www.dizziness-and-balance.com/treatment/it-steroids.htm)

    Results: Of the 129 patients studied, 91% had "acceptable" vertigo control using a lond duration approach of 3-4 injectioons/year.


    Here's what Dr.Hain has to say on the subject (taken from a couple of his articles so I referenced the seperate articles at the end of each quote - hope I managed to keep them all straight ::)). Seems that in general Dr.Hain is not so keen on the approach:

    "Use by otologic surgeons of this methodology is growing and papers supporting its use are proliferating very rapidly (as of 2007). Not all methods seem to work -- some comments about variant methods follows. This page -- intratympanic steroid injections -- has a little more detail." (http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#reduce)

    "In extremely severe cases of episodic vertigo, such as due to Meniere's disease, treatments administered into the middle ear may be considered. This is a near last resort treatment for persons who have severe attacks of vertigo. The goal of these treatments is to affect the inner ear using medication that enters the ear through the round window. The presumption is that the mechanism of disease is immune mediated.

    The author of this article is not very enthusiastic about this treatment. Nevertheless, it is rapidly growing in popularity. At the present time (2007) in his practice in Chicago, he will occasionally recommend it to a patient who is having a flare of well defined Meniere's disease, or a sudden hearing loss. The reasons for the lack of enthusiasm are given in the author's article on Meniere's disease itself, but in essence, it doesn't seem to work unless it is given over a long period, and there are alternatives (i.e. low dose gentamicin) that are much more durable, and we are skeptical that it is a good idea to give multiple injections of steroids into the middle ear over a long period of time. Still, things are changing with this treatment." (http://www.dizziness-and-balance.com/treatment/it-steroids.htm)

    "Studies using a brief period of administration, suggest that it is no better than placebo (Silverstein et al, 1998). As steroids are neither curative nor long-lasting agents, brief intratympanic steroid treatments are obviously not able to cure Meniere's disease (Barrs, 2004; Dodson et al, 2004). The present consensus is that one-time treatment has not yet been proven effective (Doyle et al, 2005) or to have a reasonable scientific basis. The core scientific difficulty is that steroids don't make any permanent alterations to the inner ear, and that they are gone from the ear in a short period of time (Harugnani et al, 2006). Thus, the hypothesis that they can "cure" a chronic ear disorder is very difficult to understand.

    Studies using a long term protocol, or an "as needed" methodology (no more than 4 injections/year) suggest that their results are very good (Sennaroglu et al, 2001; Boleas et al, 2007). This makes more sense to us. If this methodology does indeed prove out, then the main issue would be to determine where this methodology belongs in the staged management of Menieres. Perhaps, after medical and prior to gentamicin treatment.

    Other variant methods of administration of steroids.

    Intratympanic steroids combined with a viscous osmotic agent (hyaluronic acid) that reduces endolymph volume, has also been recently reported in an uncontrolled study to be effective (Selivanova et al, 2005) in persons who have failed intravenous steroids and vasodilators. They used a protocol of every other day injections, with a maximum of 7 total, combining 8mg of dexamethasone and a 0.2 mg/ml solution of hyaluronic acid. In our view, this is simply the combination of two short-lived treatments, but because hyaluronic acid is very viscous, the combination may keep the steroids in the ear for longer periods than simple injections of an aqueous solution, and might have better results due to this effect. A comparison between steroids injected with and without hyaluronic acid would be a reasonable next step."

    Bottom line: At the present writing (2007), we feel that Multiple intratympanic steroid treatments for Meniere's disease is a promising treatment strategy. There is a trade off in cost, permanency of effect, and intrinsic risk between steroids and gentamicin. We would sometimes recommend them before initiating a destructive treatment such as single dose gentamicin (also see section on "last resort" treatments on this page). (http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#reduce).

    -----------------
    Dr. Carey indicated that he uses a particular "recipe" and that whomever would administer them could give him a call for exact details. As far as when I'll be in a position for the actual injections, I doubt it will be until sometime in at least August.

    Have to leave for a bit now but I'll be back to answer the rest of the questions, to the best of my knowledge, as soon as I can. :)

    Amethyst
     
  10. gtrvox

    gtrvox our pooch Hugo

    Excellent post and I am VERY happy to read that you've been given some good news.

    While I'm well aware of the hydrops controversy (many people with hydrops not having MM symptoms), I'm still puzzled by the above. Would Dr. Carey stay away from a low sodium/diuretic protocl, then?

    Also, when you say "injections", I'm assuming intra-tympanic, correct? I can just see what my oto would say....he'd laugh me out of the office :(

    Is there anyone in Ontario that you are aware of who would consider intra-tympanic steroids as a treatment modality?

    George
     
  11. jim1884again

    jim1884again advocating baldness be recognized as a disability

    hi again and thanks for the thoughtful and lengthy response
    I knew some Japanese MDs had used the osmotic agents and vasodilators but had never heard of mixing the dex with the osmotic agent--really cool!
    and my doc only used dex and it was for hearing loss--we did it with oral steroids and chemo for what we thought was AIED
    I will look up the references for sure
    thanks again
     
  12. Mya46

    Mya46 Knowledge is POWER!

    Amethyst - glad to hear you made it to Baltimore and got some good results! Such information you've shared, thank you. I have a bad saccule (vemp test results), left ear which what you wrote makes sense to my vertigo type spells. Also, I can NOT take SSRI's as they make my symptoms come out of hiding. Much of my own research shows ssris bad for inner ear. I'm currently going to "maybe" try a TCA, very low dose, despiramine (though the brand name). It's for my depression.

    Enjoy your stay, and can you wear those ear phones like i use sometimes to block the sound? They really do wonders for my autophony/Tuillo. Forgot the name of them... :D :D OH - Noise Cancellation head phones!
    ;D

    Mya
     
  13. June

    June New Member

    OK, here's another possibility. What's in that fluid? Maybe it's not how much fluid so much as in us sick ones, we have something bad in that fluid, less fluid, less bad stuff. I have no idea, just throw that out as an alternative interpretation. It sort of came to my mind from the Alzheimer research posted by Carribean on the Front Porch that said work with rats found that 'the two-molecule form of soluble beta-amyloid produced characteristics of Alzheimer's in the rats' but not the other forms of beta-amyloid perhaps explaining why sometimes people with this substance had alzheimers and sometimes they didn't. Maybe it's something like that with hydrops. And my favorite explanation is that there are multiple disorders (causes) that cause this constellation of symptoms known as MM so every test gives contradictory results. Time will tell. It is very exciting though to hear that people such as Dr Carey are moving in on it with new theories and not cowed by the thought that they are dealing with an incurable condition.
     
  14. Beth

    Beth New Member

    Amethyst,

    So glad to hear you got some encouraging news and thanks for sharing it all w/ us! I actually got a very similar explanation (minus the tullio's) today regarding the connection between migraine and meniere's from a new neurotologist I'm seeing. Scheduled to see a headache specialist next month and she's hoping this dr. will start me on migraine-prevention therapy of some sort.

    I'm a little confused on the role of the steroid injections though. Is the dr. suggesting that these will help with vertigo, hearing loss, or both? I had two of them one week apart in Jan. after having 4 major vertigo attacks in 4 weeks, and a profound hearing loss as a result. I was assuming that the dr. was trying to bring my lost hearing back, but maybe he was also trying to minimize the vertigo as well? I have had a decrease in attacks since those injections.
     
  15. June

    June New Member

    Beth, to be sure I am reading correctly, did the hearing loss come before or after the injections? If before, did they help you hearing?
     
  16. Amethyst

    Amethyst She believed she could, so she did.

    Ok, had my 2 glasses of red wine, aged cheeses, and chocolate cheesecake. Ahhhh, hard things to give up so I'll enjoy them now :D

    Hi June,

    Thanks. I'm sure I will be thrilled with the news too, once I have the time to digest it all. No matter what, I did get the answers that I longed for, and the possibility of relief in the near future, with little to no side-effects. Hard not to be happy with that! I sure have nothing to lose. I think your comparison with anti-virals, and your over-all progress is the most logical progression here. To take the information/options I've received today and to carry everything forward, one step at a time.

    What really impressed my partner and I about Dr.Carey was his total lack of ego issues. He was confident without being the least bit arrogant - very very confident in what he was proposing.

    As for the allergy connection, I really don't know June, sorry about that. What I can tell you is that I had a very detailed 4 page questionnaire to fill out. It asked all kinds of questions regarding my history, possible triggers, general health, etc. I was asked if I had any medicine or food allergies (Name & type of reaction). My only food or drug allergy is penecillin but I am alergic to literally almost everything environmental. When I was tested years ago I had more than 120 reactions and they said it was easier to just say what I wasn't allergic to - food and meds. When I met with Dr.Carey he read over the questionnaire but never asked a single question regarding allergies. To me that suggests he may not be so inclined, but I suppose that's up to interpretation.

    And with the viral connection, again it did not come up at all. There was not one single question relating to herpes, cold sores, etc. There were questions regarding contraction of other infectious diseases (TB, Hepatitis, Syphillis, Lyme disease, etc.).

    This is where I so wish that I was having a two-day appointment as was originally scheduled. Unfortunately Dr.Carey needs to leave town and so he had everything scheduled to one very quick half day appointment. I would have loved to have gone back tomorrow having discussed everything here with you guys. Boy would we have some good questions going at that point. Oh well, I'll be back asking more questions of my local neurotologist to see if he can fill in some of the blanks.
     
  17. Beth

    Beth New Member

    The hearing loss came first, and then I started the steroid injections one month later. I got no improvement with the hearing, but did notice a decrease in major vertigo episodes.
     
  18. VickiS

    VickiS New Member

    I am on the epilepsy medication (called Epilim here in Australia), it seemed to help with MAV at first but not now, it's like the effects wore off. I'm seeing my neurologist this Friday, he specialises in MAV. He wants me to try the calcium channel blocker (Sibelium) and I am also on one of the older anti-depressants (Prothiaden in Australia) which I've been on for ages but I don't feel it's helping.

    MAV is very hit and miss with diagnosis and treatment.
     
  19. Amethyst

    Amethyst She believed she could, so she did.

    Hi Jim ~ the stats regarding Meniere's and MAV were incorporated into the hard copy paperwork I was provided. The author is Dr.Carey and unfortunately he does not quote sources/studies in it. Sorry I can't provide more on that one.

    As for the hydrops relationship, I definitely don't think Dr.Carey was trying to rule it out, but instead, suggest the real possibility of some cases of Meniere's not having a hydrops basis. He said the hydrops were not conclusive, that yes, upon autopsy many sufferers are found with an engrossed endolymphatic sac and evidence of damage in the saccule, ultricle area consistent with hydrops. He indicated there was no way to know until autopsy.

    I think this really supports what June and so many are saying - that's there's likely a number of possible contributing factors in Meniere's disease. That's why I wonder though, how can anyone be so sure that Steroid injections is the correct answer? There I go being cynical again....I just spent a nice half hour with a very successful older lady I met here at the hotel (JH consultant big-wig) and spent much of the time being reminded to always look at the glass as half-full. Seems I have a long way to go still ::)
     
  20. Amethyst

    Amethyst She believed she could, so she did.

    Thank you Lisa, you're always such a sweetheart to me. Your posts give me such a warm smile.

    As mentioned in a previous reply of mine (in case you missed it buried in all the other stuff), I would think that the injections will have to wait until sometime in August at least. I have an opportunity, I think, to transfer neurotologists when I get home. I won't know for sure until my appointment with the new neurotologist in early August. He will have Dr.Carey's report in front of him and at that point I'll discuss the injections.

    Big hugs back at ya!
     

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