Ongoing research study at DUKE re: Dizziness & Vertigo for RHS & MM folks

That is so awesome, Wylee!

Hopefully it is only a matter of time before this new treatment becomes available everywhere. I'll definitely mention this to my doctor and see what happens.

 

wow... that's all i can say.... wow how great. I hope Vanderbilt starts this procedure

 

So happy for you Wylee!! I am getting an MRI done soon and then hope to have the same procedure done. I will of course post on everything I undergo.

Wishing you continued success!!

 

I hope this continues to help.Hopefully this could be a break through treatment?

Skye,I pray it really helps you as well.

 

I am going to ask my Neuro-oto about this at my next appointment...very interesting information!

 

Please feel free to contact Dr. Kaylie, via email is the best way. He responds to all emails, probably will be a short response (he is a very busy man!), but he can help you find someone in your area. Both Dr. Kaylie and Dr. Gray are willing to help other Docs in doing the same procedure. The main thing that the Docs have to be willing to do, is to "think outside the box." As was stated earlier, one person's "normal" pressure may not be within the "classic" normal zone.
Dr. Kaylie used to be at Vanderbilt, so I am sure that the Neuro-o's over there would speak with him about the procedure and research project! Also, Dr. Kaylie is well known in the field of Otolaryngology, so just to mention that he is doing this project may add creedence to it.

Today is day #5 post tap#3. My symptoms are continuing to improve. Already thinking more clearly (brain fog is clearing). I have noticed a BIG improvement in walking. Far less "jumping" going on in the environment with each step (I especially like this part). Eyesight is so much better. Double vision is no longer even noticed, if there is any.Used an escalator and moving walkway with no dizziness and felt fine getting off them too. No vertigo when I close my eyes at the end of the (usually is bad when I am very tired). No problem walking - don't have to touch the wall as I go. "Buzzed" feeling gone. Many of the cognitive symptoms take a bit longer to resolve (more complex) but looking good!

 

It is now one week post tap. My symptoms continue to resolve. Thinking more clearly. The brain fog is disappearing. I think of all my symptoms, it is the cognitive ones that bother me the most. It is such a pleasure to be able to think rationally again. Memory is already improving, short and long term. Amazing how so much of "normal" life is taken for granted. For those of us who have lost that, even the smallest improvements are milestones!

 

How painful are the taps?

 

fantastic news. very fascinating. hopefully this treatment will continue to work for you. it would be great for bilateral sufferers who have very little options, hopefully there will be more focus and appreciation with this new discovery.

 

It's been almost 2 months since I had my CSF patches.

I had an appointment with Dr. Kaylie today. Everything is going great, he was so pleased with my progress!

I had a hearing test today and found that my left ear is much better! My hearing was better than it has been since I started seeing Dr. Kaylie, Nov. 2009.

My right ear has remained stable, that means severely impaired, but I'm just happy it isn't fluctuating any more. I am getting evaluated for hearing aids next week! Hopefully I'll be able to hear much more very soon!

So far, No Vertigo, nearly no disequilibrium, and less fullness in my ears!

I'm doing so much more now than I have in years. I broke down in tears today in Dr. Kaylie's office. I am just so grateful. I went to a movie the other day and didn't have to have subtitles! I'm so choked up over all of this. Even if the symptoms come back, now we know what to look for.

I'm a new person! I have my life back. In early January, I was suicidal, now I am looking forward to every day!

Please let me know if I can answer any questions for anyone. My blog is at http://picnicwithants.wordpress.com

 

How were your leak(s) diagnosed?

 

Angelea, see response #13. That is where Wendy explains her procedure, complete with pictures. She had a myelogram done (which she explains in detail on her blog).

Henrysullivan, the only pain is from the initial pin prick of the needle used to introduce the numbing meds (like a novacaine shot). My back was a little sore this time because Dr. Gray had a bit of trouble getting the needle into just the correct angle. Other than that, no pain. No headache, just feeling so much better.

 

I am surprised there is not a lot more interest in this thread, or am i missing something? to me this sounds like the ultimate treatment for bilateral sufferers.

 

Thanks, Wylee. I agree with Irelandman, this is fascinating. Is this really as rare as it is purported to be or is it unrecognized?

 

I think the key is finding Doctors who think "outside of the box". They need to be really dedicated to finding solutions for their patients. Being in a research/teaching setting affords docs to be creative, try different approaches to finding solutions. They are not required to see "X" number of patients per day. If you read up on Idiopathic Intracranial Hypertension (this is the technical term for what we have) it again shares so many of our symptoms. I am hoping that many more people will ask their docs about it and get them thinking, but do not be surprised if your doc is not interested. Just as we did, you may have to search out docs who are willing to give it a try (or you can just come to DUKE).
Here's a link to a good description of IIH:
http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

 

Who can we contact to find a doctor in the area willing to do this?

 

Here is contact info.

 

Dr. Kaylie's email is: [email protected] He can make suggestions for you. Skye has her doc working long distance with Dr. Kaylie and Dr. Gray. Perhaps there is someone near you they could do the same with. I hope so.

Today is day 11 post tap. I am feeling a bit dizzy today. The diuretic is not strong enough at the current dose. I can feel the extra water build up in my system (my feet hurt!), need to up the dose. We will be trying 50 mg. of Edecrin twice a day and see how that does. I will do anything to keep those rotten symptoms away! Even though my CSF pressure has probably come back up (hopefully not all the way up) I am hopeful we will get the meds right. I really don't want to have to do the VP Shunt route.

 

Has anyone had any luck with getting the information they need regarding this? Is there anything else we can answer or do for you?

 

Just keep us updated Wylee with how you are doing... who's we?