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

Wow! Sounds like you have had a very good evaluation for sure. If I had all the problems and had all the things done you have had, I'd still be a bit 'sceptical' too. However, It truly sounds like you have a doctor who is 'on top of things' and I'd take encouragement in that!
They keep saying, 'medicine is not an exact science' and we learn, in dealing with conditions and diseases that are so different in everyone, and the treatments vary so much, that evidently that statement is 'so true'!
Did you mean that your new doctor said, 'cochlear hydrops' doesn't 'lead to meniere's'? Or did he mean that it isn't a part of it or 'in the family' at all? My doctor said that's what I have and it's 'better' to have than Meniere's. He's recognized here as one of the best in this field. I only have had 'vertigo' a few times and only briefly. I have this 'light headed' feeling--that, believe it or not, makes my head 'fell like it has pressure' in it. I guess that sounds contradictory, but that's the best way to describe it. I don't have problems walking and things aren't spinning. After long periods though of this happening, I am nauseated and that's pretty miserable. I have good days and bad, and some days are up and down. My hearing is back, but this 'thing' in the head makes me miserable sometimes.
I wish you the 'best' in all this new information and treatment.
yanksgirl

 

Sure Nome, I went to Johns Hopkins and met with Dr.John Carey in their Department of Otolaryngology - Head and Neck Sugery, at 601 North Caroline Street. Both Dr.Minor and Dr.Carey are world re-known for their work. I was sent there from Canada when my Canadian doctors became completely stumped with my case.

Amethyst

....and great to hear the new treatments are showing some positive effects for you Danny!

 

Joe, I love the long and detailed response - please don't apologize! As a number of people here know, I write many a detailed post/PM.

Your explanation makes so much sense, thank you!!

 

Hi Yanksgirl,

Dr.Carey stated that my symptoms were consisted with Meniere's and that since the area primarily involved is my Saccule, that's why I have more Cochlear symptoms (closest to the cochlea) such as significant hearing loss. He seems to avoid differentiating between Cochlear Hydrops and Classic Meniere's, simply stating it's a matter of where the Meniere's is causing the issues.

Hope that helps,
Amethyst

 

That does sound reasonable. I've read other web site posts from doctors saying cochlear hydrops is 'in the family' of meniere's. Since my symptoms are not nearly as bad as so many here on this board do have, I'm thinking there has to be a difference--as you said, in where the
fluid problem is located, since it's the fluid that seems to cause the problem and the distribution of it in the inner ear canals. Hard to believe, more research hasn't figured this one out as yet. thanks for the reply. yanksgirl

 

Amethyst darlin :-*

I know the thread is over 8 months old and hasn't been posted in for ages but when you first posted it I was too bloody crook to take it in, or even read it :'( so I saved it cause it has so much great info....you are the best :-*

I have been feeling much better lately (for 2 weeks at least ) but as a result of recent testing I am back on the "need to know" merry-go-round so I am bumping it to the first page to make it more accessible to me....I will need to re-read it (bloody brain fog) a few more times and will have a few questions for ya when I can get the brain to think a bit better

Actually, one of my first thoughts was that maybe it needs to go in the database section as it so informative I'll ask Ray about it but not till I've finished :

Love Maggie

ps: vino before poison seems to be working this week as well ;D ;D ;D

 

Here is what is so great about this post....someone who gets quality care....asks good questions....is proactive in understanding their condition....and keeps pressing for solutions and proper medical therapy. All of us should be able to write this much detail on ourselves. If not, then we need to dig deeper or go to another doc. Good post. Sid.

 

Thank you Maggie and Sid, your kinds words mean so much to me And I'd love to help with any questions you have. My post, I think, is so detailed because that's what I had done for a living prior to the MM - I was an information analyst and was known for my long and detailed report summaries. Now that I'm not able to work I enjoy getting a chance to report on facts found...in the hopes it may help others shed some light on their own case.

So happy to hear it's working for ya still!!!!

 

I am also a member of the Amethyst fan club! One of our brightest, I must say..............
Lisa

 

I pmed you

 

Thank you Lisa, what a sweetheart you are!!!!! :-*

 

I know, I got your PM Sara. Sorry, it's been a long day and I'm not up to writing too much tonight. I thought I'd get back to you tomorrow.

Actually, since your question pertains to this thread ("Do you follow any of the doctors advice and how are things working out for you"), I think I'll post it here as a follow-up to my JH appointment last June. Check back tomorrow please

 

Still a bit brain fogged plus have been using the brain this arvo to help a friend with her nursing studies and that reeeeealy taxed it : so just bumping this for me

 

Well thank you for getting this thread active again Maggie.

Sara - sorry for the delay in responding - hard night last night, my Mom has gone back into hospital (twice in two weeks) with toxin build-up from her failing liver.

Yes I am following the treatment set out by Johns Hopkins. My new (and amazing!) neurotologist is being very careful, taking things one step at a time.

Step 1 was to tackle the MAV diagnosis:

When I first returned from my appointment in Baltimore I began with the Migraine elimination diet. I never would have believed I suffered with MAV on top of the MM but now I'm convinced - the diet made a huge difference. I went from having these annoying light sensitivity headaches (not what I consider a Migraine though)daily.....to rarely having them at all. Through the elimination diet I discovered that red wine, MSG, and soy sauce are my biggest triggers. When I avoid these items I don't have the headaches (or at least just a few), and the daily foggy dizziness I was experiencing has improved significantly. I still suffer with all the symptoms that are associated with MM - the fullness/pressure, tinnitus, hearing loss, vertigo, hyperacusis, tullio's, etc. etc.

Since Dr.Carey at JH had also suggested a migraine preventative med, my neurotologist referred me to a neurologist I had met with a couple of times. He's head of the Migraine Association here in Ottawa. He has made it very clear to me that he doesn't totally believe in the MAV dx - his problem with it is that there are still no diagnostic criteria for dx'ing MAV. He was certainly willing to try a preventative drug but didn't know if it would help at all - he really wondered if the headaches were being caused directly by the MM. I was put on to a med anyways.....desipramine 10mg daily to start, increasing by 10mg monthly to a max of 50mg daily. Desipramine ended up being the choice because it made the most sense in combination with my other meds - in particular, the anti-depressant I'm on (Zoloft 300mg daily).

I've been taking the desipramine for 6 months now- I increased up to 40mg daily but have brought that back down to 30mg because, I believe in combination with the Zoloft, my Restless Leg Syndrome got way out of control. Unless I want to try yet another med for the RLS (they use Parkinson's meds to help with RLS), which I didn't, I needed to play with the med dosages. As it turns out, I think the elimination diet has done more for my MAV symptoms than the med has - and I'm am so thankful for that....I know how lucky I am. As of last week, after meeting with my neurologist for a 6mth follow-up, I've been given permission to reduce the desipramine entirely and see if I can manage the MAV with diet alone. I'm looking forward to trying. Of course, with so many doctors all coordinating my meds/treatment (neurotologist, neurologist and psychiatrist), it's a very slow process....only now are we finally getting on to the steroid injections recommended by Johns Hopkins.


Part 2 - Steroid Injections

It's amazing that it's been the better part of a year since my big appointment at JH and I'm still waiting for my first injection. Dr.Carey wanted to give me an injection right then and there during my consult with him but couldn't because the Ontario government was flipping the bill and needed prior authorization before covering the costs of an injection.

In November I had a venting tube inserted in my MM ear. My neurotologist had hoped to alleviate some of the pressure I feel and to hopefully bring an end to this awful autophony I suffer with - - - my voice echoes/resonates strongly in that ear and makes it very uncomfortable to speak. I've been dealing with this new symptom for nearly two years now. It had become a 24/7 problem and I was starting to avoid conversation whenever possible - not so easy on my family and friends. The tube did help with the pressure, which is now fluctuating instead of constant, and has relieved the autophony in part. I don't really understand that one - at first it stop it all together but over time it's been returning more and more. These days my voice echoes about 70% of the time. At least it's not 24/7 and I'm more willing to speak.

On Wednesday, April 15th I'm set (finally!) to have my first dex injection - using the vent tube. My neurotologist has spoken with Dr.Carey at JH to obtain the exact recipe and protocol. The recipe they use has few or no preservatives which apparently brings down the risk of hearing loss to next to nothing. As for the protocol to be used, I'm still a little unclear on that one - my understanding so far is that I'm to get one injection (higher dose I believe), see how long it works - repeating up to 4/year as needed. I'll find out more on the recipe and protocol when I meet with my doc for the injection.

I'm hoping that the steroid injection can reach the saccule and reduce the swelling that the doctors have explained is the reason for my Tullio's (noise induced vertigo). Apparently most of my problems involve the saccule/utricle. I've been told that the Tullio's, the elevator dropping sensation I get daily, and the drop attacks are all due to damage of the saccule. The utricle is causing the swaying false motion I also get regularly. From my understanding, if the steroid can reach the saccule and bring down the swelling, I may have a chance to temporarily halt the Tullio's.

Any help from the steroid injections, no matter how temporary, will be very welcome. Just to be able to meet up with friends and cope with the noise of more than one person speaking at a time would be amazing!


Some New Info: my neurotologist ended up disagreeing with Dr.Carey (JH) on two points.....

1) Apparently I can trust the results of my ENG (46% vestibular loss on left). Dr.Carey had believed that the sac surgery I had interfered with ENG testing and would yield false results. My regular neurotologist has said this is true of some sac surgeries but because of where the incision and work was done, it does not interfere with ENG testing.

2) He also let me know that steroid injections shouldn't be an issue. Dr. Carey had stated that scar tissue from the sac surgery would likely prevent proper absorption of the dex. Again, my regular doc stated that there is no scar tissue in my middle ear and therefore, not a problem for receiving either dex or gent injections.

So that's it with the update. I can't wait to see if the steroid will help at all. If it doesn't, my next option is gent and then if that doesn't work, I have a lot of thinking to do - ie. VNS or Laby.

Amethyst

 

Hello,
I am a newbie, but I founbd this thread really interesting. I was diagnosed almost 2 years ago now and when I first went to the ENT I thought it was something simple like a cleaning. Well by the end of the day and 2 hearing tests later, the dr decided to send me to another ENT and was thinking it was MM. I had the shots about 2 months after my first visit, I went through all the testing and it was confirmed. The shots are hard to get and in the end they helped the Vertigo but nothing else, my hearing comes and goes but is decreasing as time goes on, and i am now affected in my other ear as well. I think that the hardest pill to swallow with all of this is that there is not a real reason as to why this happens to some of us, and the fact that you may or may not get control. I was told by Dr that I would be forever dealing with this and that eventually my hearing would go!

 

Do the steroid shots cause dizziness and vertigo to increase while they are working (like Gent) or is that not a normal response?

 

thanks for the update.....I hope it works for you they do not do laby or vns here they do that in ottawa

 

i don't really feel the shots helped anything. My major complaint was my hearing, the ringing and fullness in the ear. I did expereine Vertigo prior to my diagnosis, but before you know what you are dealing with you simply feel that maybe you are a little light headed and make excusesw for the feeling. After the shots, my hearing got worse but the Vertigo was a little better than before.
Dis anyone have a different reaction from the shots?

 

9:09 update is good. I am going to make my point again...everyone should be able to tell their medical treatment story similiar to this. Good care....progressive therapy....understands the details. But the last line in your post is the best...you know your next two steps if the current therapy does not work. Everyone should be partnered so close with their doc that you always know the next two or three chess moves....all based on objective testing and logical deductive reasoning. Everyone's plan will be different because everyones symptoms and test results are different. This board is wonderul...but its no substitute for a top notch doc. Again, good example for us to follow...I LOVE that you know your next two steps is current treatment fails. Here is exactly what my doc said on my last visit (cut and paste from the email he sent me after the visit). Note the specifics that only fit me...how he involves any other care provider...I think this is another good example. It sure feels good when you get this kind of care. Sid

We propose this plan:

(1) Continue your GI management per whatever your GI doc says.
(2) If you get more dizzy attacks, FIRST try increasing your dose of betahistine, tapering up to 32 mg three times per day.
(3) If that does not work, put dexamethasone (steroid) drops through the tympanostomy tube in the right ear. This will deliver steroids LOCALLY (and avoid the systemic side effects).
(4) If none of this works, but if Humira eventually gets FDA approval for colitis, then switch to that – it may offer better long-term suppression of the dizzy attacks.

 

Hi Burningpeace - welcome!

Yes I think people respond quite individually to the steroids. For some it restores their hearing (auto-immune issues are suspected in these cases). For others it stops the vertigo and helps with the hearing....and for others still, they find no relief at all (most say there is about a 50/50 success rate). Many also seem to find themselves worse right after the injection and then improve significantly over the next few days (I was warned about that from a couple of doctors as well). Hearing loss worsening as a result of the steroids seems to be quite rare and from what I've read lately, it seems the hearing loss is attributable to the preservatives used in the concoction.

hi Sara ~ From what I've been told, Canadians on average are choosing not to go the surgery route and fewer doctors are recommending it. It's not, however, particularly difficult to find neurotologists who are preforming surgeries. My last neurotologist in London, Ontario did my sac decompression surgery and was experienced with both VNS and laby. My new neurotologist here in Ottawa (Dr.Schramm) devotes the majority of his time to Cochlear Implants but does perform the other surgeries as well. He's the one that explained most of it to me - he said that he was trained in Chicago and from his experience on both sides of the border, the US does many more surgeries than we do. He strongly suggested I move towards a laby very slowly - because of the chance of becoming bilateral. He said that he found those who had tried everything else first were much more accepting of becoming bilateral than those who jumped into the surgery. I can understand that. If and when I chose to go the laby route it will be a comfort to know that I've taken time to research and understand my options, and to try all alternative, less drastic treatments first.

Sid ~ thank you again for such kind words