Cererbral spinal fluid study at Duke university

I have been following the reports of a member of menieres.org. here is a link to the thread. This woman who started the thread has Menieres and Ramsey Hunt syndrome. I contacted the doctor she mentioned today.Dr. David Kaylie.

He said it is not a study but they are treating patients.As I was first diagnosed with Menieres and we are leaning towards MAV and so may people have both and there is so much overlap I wrote back again and mentioned mav.

He wrote:’‘The migraine associated vertigo is where we are seeing some of the most benefit. I have only been looking at CSF pressure in bilateral Meniere’s patients so far.’’

This area sound very promising and is probably one most people are not aware of.

menieres.org/forum/index.php … 484.0.html

Wow…this sounds amazing, but I was unable to find the part about helping MAV’ers?

Kelley

I don’t think mav is mentioned on the thread,I wrote to the doctor she mentions Dr.David…

He said that in an email to me when I asked him about mav and the closeness and overlap of symptoms with Meniere’s. He volunteered the info.

James,
Can you post the email? I would love to see what he said.
Are you considering this?
Kelley

That is basically it, it was 2 sentences.Didn’t want to bug him.His response was short and sweet!

Hi James,
Thank you so much for posting this info. I just wanted to let everyone know that I spoke with Dr. Kaylie today. He is an unbelievably kind and knowledgable physician and I really believe he is on to something. He seems to be helping many people with similar symptoms reported by all of us on this site. I think his work offers a lot of hope and another explanation as to why some of us suffer from chronic 24/7 disabling symptoms. I always felt there could be more to this picture than a migraine diagnosis and it was so exciting to hear him explain that regulating variations in CSF pressure (whether they be too low or too high) can cause symptom relief. Unfortunately, his procedure really has to be done by him and his neuro-radiologist as there are currently no other physicians trained properly in this technique.
Ya never know… here’s hoping there might be another way out of this mess for many of us with intractable symptoms!
Warmly,
Lisa

Hey Lisa,
That’s great that you got to speak with him.I too think he may be on to something.So many symptoms of mav and menieres overlap,Prosper Meniere proposed around 150 years ago that there is some kind of connection.

In researching this myself I became aware of how the csf fluid also goes to the ear.I never knew that.In menieres fluid buildup and earfullness are usually a big symptom.The how and why of fluid buildup or hydrops has puzzled researchers.Is it viral,autoimmune,etc.

This may be a big key in finding how these fluids possibly buildup contributing to problems for mav’ers and people with mm.

if you’re looking for more info, or i should probably say, another patient’s experience with these doctors and this treatment, go to this blog…

that link above is just a summary of her experiences. you can go back through and follow some day-to-day entries of the ups and downs of it all. she even has some pictures and things to go along with it. she’s also very good about answering questions if you comment. she’s very nice and open about all of it. she has bilateral meniere’s and right now i can’t remember if she has a formal diagnosis of mav but she does have migraines.

very interesting…so, where do i sign up? :smiley:

I’d really, really want to know they were looking for the mechanism that was causing high or low cerebrospinal fluid pressure. Otherwise, it seems, they’d have to continue to monkey with it by punctures. They’d bring it up or down to a level that would eliminate MAV symptoms, homeostasis would restore it to the level that caused you symptoms, they’d have to go in again, . . .

Hi David,
Excellent question and after speaking with the doc it is my understanding that with low CSF pressure the mechanism would be from a spontaneous leak or a leak due to trauma. These holes can be identified and then can be plugged up by a very simple procedure known as a blood patche. With regards to high CSF, after you have the fluid drawn out, the patient would be on medications that help to sustain this level. If this does not work the patient would have a shunt placed to cause a continuous drainage of this fluid. I have to tell ya, I am a doc myself and very suspicious of anything that does not follow evidence based medicine, and I was very convinced of this procedure in helping people with central dizziness (those carrying a diagnosis of MAV included). It really makes sense to me.
Warmly,
Lisa

I have been consistently dizzy for 9 months. 9 months ago, I gave birth to a beautiful baby girl. I had a spinal and it makes me wonder if I indeed have a leakage. I brought this up to my doctor weeks within surgery and the insisted I’s have a splitting headache. I explained to them that I really do not get headaches, I get dizzy instead but they didn’t seem concerned. After reading this post, I have done some more research and these are some symptoms with a spinal leak-

symptoms include severe dizziness and vertigo, facial numbness or weakness, double vision, tinnitus, fatigue, a metallic taste in the mouth, nausea, and vomiting.

I’ve bolded the ones I’m experiencing daily which interestingly enough are the same symptoms associated with MAV so who knows. I’m very concerned with contracting meningitis so I’m going to my doctor pronto tomorrow morning. I’m really hoping this is what it is. This post just what be that saves my life.

Hi James — I missed this thread. Are you aware of any literature on this? Has he published any of his findings?

Best … Scott 8)

hey scott,
i’m not aware of any published research yet with this. i keep in touch with one of the patients and i think that this is still in the early stages so far. but in this thread http://www.menieres.org/forum/index.php/topic,31484.0.html it does explain a bit more about how the study started. there’s also a link to the dept at duke. i know other people have e-mailed the doctors involved for info. you may be able to do the same. if you don’t have luck getting the e-mail address, try the blog i listed above, she (wendy) will give it to you. her story is really pretty interesting to follow if you can get through the other posts. i think if you click on the meniere’s disease tab, it may narrow down the posts for you.

i am so tempted to travel there myself and see what it’s about. it would be about a 3 1/2 drive one way for me. but not sure if i really meet all the criteria for it as of yet.

Hello everyone,
I just wanted to say that I have spoken extensively on the phone to the doctors involved with this procedure and it really does sound very promising to me. I always felt that many of us with central dizziness that is 24/7 might have something else going on besides a chronic migraine condition. An increased CSF or decreased CSF pressure as the cause does make sense to me conceptually. They really are seeing some very good results at Duke.
Here’s hoping!
Lisa

hey lisa, keep me posted if you do it. that is awesome you are so close. i was considering flying across the country from california to visit. would your insurance cover this? would you pay out of pocket to see this doctor? i’m wondering how much something like this would cost if it wasn’t covered…i totally agree there is something more behind the 24/7 dizzies than migraine too. i know when i get the migraine vertigo on top if this. there are 2 different things going on.

i had a neurology appointment today and took in the literature to my doctor from the menieres website and we both decided it would be a good idea to try and get a spinal tap. the scary thing was i asked him, “what if i have low levels of csf, what happens then?” he then joked, “what, you think there is artificial spinal fluid or something?”

i told him that “yes, i think there is and that was what duke medical was using for people, etc. with low pressure.” i think there is a slight language barrier there and he must have thought i wasn’t serious or something. anyway, i’m scared to death but willing to try anything at this point. i think that will be scheduled in the next month or so.

i just want to figure out what’s wrong. i am hoping this might give me more answers…

Hello Ilovesalem,
First of all, this would be covered by insurance so no worries there. Out of pocket it might be very costly as anytime you have procedures and radiology involved (it’s done under fluoroscopy) the costs can get very high.
As far as treatment for Low CSF… if this is determined then the source of the leak will be investigated by a procedure called a myelogram. It will be done while you are getting your pressure measured. Yes, there is artificial CSF that the doc will add to see if your symptoms resolve, but the definitive treatment is to plug up the leaks with a blood patch. This is actually a very common procedure as low CSF headaches are common and treated this way by many docs throughout the nation.
The Duke doc’s expertise is in manipulating your pressures while on the table to determine if there is symptom resolution and then following up with appropriate treatment. From my understanding, even if your pressure’s are in the normal range, it may not be the normal for you and only these docs are skilled in this manipulation.
Best of luck to you,
Lisa

I am checking this out with my GP. This sounds very likely to me.

— Begin quote from "scott"

Hi James — I missed this thread. Are you aware of any literature on this? Has he published any of his findings?

Best … Scott 8)

— End quote

Hey Scott, I was wondering where you were and figured the new job was taking up most of your time. :smiley: I don’t think they have published anything yet and it is not really an officical study from what the doc told me.He said they were working with bilateral menier people and that they were also getting good results with mav.He wrote back to me right away his email is:

david.kaylie@duke.edu

scheduling office at 919-684-3834

Inafog I know has already visited, Lisa have you checked into this?

I emailed Dr. Kaylie and got an immedite response- that speaks volumes. I’m waiting to get the information to find out the cost of the procedure would be, probably an arm and a leg but anything to have my world back!