Going to Germany- Orthokine

What is SSNHL?

 

My symptoms between Sudden Sensioneural Hearing Loss (SSNHL) and first vertigo attack were ALL the other wonderful experiences of MM: hearing loss, roaring tinnitus, pressure, fullness, brain fog. Hearing loss is the typical downward slope in the low registers, down about 50-60DB, slope starting around 800Hz-1k.

Immediately following Germany I was back to 97%, but at this point I have to attribute that just to coincidence or the ebb and flow of this disease. Today I feel like I have lost about 90% of my hearing in my affected ear- it has not been a good run since returning from Germany thus far. My last injections were on Friday, 2/28/14, or 12 days ago.

 

So sorry to hear that! I know you have to be more than 'discouraged' at this point.
I do hope that this is a 'temporary' setback and that you are in for better days ahead.
I didn't go to Germany, but did 'finally' get approval for anti-virals and after 3 weeks no improvement and in fact the head pressure and dizziness has been worse by days end. So, I'm a bit discouraged but nothing like you, had I gone to all that expense and 'high hopes' for this new treatment! Somehow there has to be something that is going to help us, if not take away the symptoms, give us the strength to get through them. For me, it's my faith, and the meds that I believe are given to help us deal with all this. Sometimes they work--sometimes not (the meds I mean). My faith is 'always present' and gives me the inward strength to deal with all this. Not easy--for sure--but I know I'm not in this alone! You aren't either, GF! Hang in there

 

sudden sensorineural hearing loss

 

Fingers crossed for you gfsound. Hope this is just a fluctuation.

 

I am wondering if you have come back to very high pollen count like we now have early this year in Atlanta, my symptoms immediately got worse. If that is so then you may still snap out of it and get well later on.

 

Just came across this, another person planning to try Orthokine. I'm sorry, I am late for work so am just going to paste the link. But this story made me feel very sad for this man's quality of life and IMHO mis-perception that all these things he is trying to control in his diet are correlated to his symptoms. I've been there, done that and learned I can't, nor do I want to, live like that. And for me it didn't matter anyway.

http://blogs.westword.com/backbeat/2014/03/menieres_disease_musician_paul_jansen.php

 

Now you beat me to it TWICE, Katniss! Thanks for saving me the work!

 

Lol! You gotta be fast around here.

 

Just read that and if anything it sounds more like he has MAV or a combo of MAV and MM. Given his sensitivity to tyramine, in particular.

That's one of the lovely things about Meniere’s I guess. So many variations on one "experience" that you can't really pigeonhole it. When he says "we" have to watch out for this that and the other, I don't know that that is necessarily helpful. For example soy sauce doesn't bother me at all. Nor does tyramine.

I do like his crowdfunding method though, haha.

 

hang in there probably have a lot of stress just wanting to get better we are all pulling for you and thank you again for taking the time to keep us updated sorry you feel like crap today tomorrow's another day my friend God bless

 

how are you doing? i hope somewhat better give it time on another matter did you have arthritis? have you noticed any improvement in any aches and pains? please keep us posted good and bad alot of us are praying for you God speed buddy

 

Well, I have been trying to hold off for the one month anniversary which is when I report back to the Dr.'s, to be fair to the treatment. However, since I know some are anxious to hear about my progress, here is my update.

After the 3rd day of treatment in Germany, I started having amazing days, and was back up to 97%, as I posted earlier. However, upon returning home after several days symptoms started creeping back up. Strange thing is that they are lasting longer and more severe than before Germany (except for vertigo- haven't had any). I feel nearly 100% deaf in right ear, and have had hyperacusis, tinnitus, and brain fog and it has been almost non-stop. Could it still be a crazy last stand? Could it be that Orthokine made it worse? I don't know, of course.

And with regards to not having had any vertigo since my return, my episodes are so sporadic that I certainly cannot and AM not attributing that to the Orthokine treatment. Frankly, everything I've experienced could simply be the natural ebb and flow of the disease, and not at all a result of the treatment.

So needless to say thus far I do not consider my Orthokine procedure a success. As I've said, to be fair I should wait the requisite three months to judge its efficacy- but that is my update, unfortunately. As I mentioned to Caroline, I was hoping to be a Dana White story, but it was not to be. But we shall see- I'm discouraged of course but not giving up hope. And if nothing else, at least there will be one testimonial here on the forum for Orthokine; someone had to do it, right?

@deadeye- the only "arthritis" I had, which wasn't arthritis, was the snap crackling popping in my neck from all the chiro I had done to "fix" my MM, and that is all gone after treatment. But I'd GLADLY take that back to have the MM symptoms disappear, of course. I just emailed the guy I sat next to on the plane who had two bad knees that "needed surgery", and he is 85% better after treatment. I can't recommend this place and these Dr.'s highly enough for orthopedic conditions based on the testimonies I've both read and heard in person- many many people are avoiding costly surgeries that don't end up helping anyway.

Best of luck to all. I'll keep everyone posted- good, bad, or ugly.

 

Thank you for your update. As always, the only thing that will help any of us is open and honest discussion of the treatments we have tried and let others make informed decisions based on our experiences.

thanks again.
good luck

 

I agree with Bulldogs that we are grateful for your update and your honesty about how you are doing. Although it's not what we want for you it is good to be able to discuss it honestly and openly.

Still hoping that it is early on and that in the next 2 months you will start to see some improvement. xx

Have you given any more thought as to whether you will return for the next session if there is no improvement at the 3 month mark? I am wondering if anyone else didn't see stellar results at the 3 month mark but then went on to see results after the 2nd session?

 

Thanks for posting,sorry it is not what you hoped for.I have a doctor friend who used to say to me how long did it take for you to get this way? Meaning of course that healing takes time.It's still early days. Hoping for better days ahead for you.

 

Thanks for the update and it is too early to tell, seems like most of the treatments take time to see substantial results..fingers crossed for you.

 

I have been giving this some thought, and honestly if I see NO improvement in three months, then going back makes little sense to me (except to indulge in more German culture ). From what the Dr. told me, there wasn't anyone that didn't see some pretty substantial relief by month three- the one case study he told me that keeps coming up in my head that he seemed to use as "worst case" was a guy with tinnitus who "only" had a 50% reduction in symptoms, and then came back a couple (or several) months later to get further injections which took away the rest of it. Therefore, progress is all I can really hope for at this stage.

 

Thanks for your open assessment of everything.
I must say I have been doing a lot of reading on orthokine and im not the cleverest but it is strange how it helped Dana. From the research I have done it seems to baffle the docs as well.

Maybe Dana is in remission. Or mr placebo is doing the job for him. Or maybe it did help him and he got lucky where you are unfortunate for the time being. Well you have definitely taken one for the team here, so thanks should be the order of the day.

 

My uneducated opinion on Dana is this. I think his symptoms were aggravated by inflammation of the vestibular nerve ie. (vestibular neuritis) Which logic and reason suggests he would see amazing results with anti-inflammation treatment. This also would explain why the shunt surgery was a major flop for him. I mean hey I had a hell of a dose of anti-inflammatory meds after hernia surgery and felt like superman for a couple of days. Then the beast let me know it hadn't gone anywhere.