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

My name is Linda. I am one of many patients being treated at DUKE University Medical in an ongoing research study being conducted by Dr. David M. Kaylie, Neuro-otologist, and Dr. Linda Gray Leithe, Neuro-Ragiologist.
http://otolaryngology.surgery.duke.edu/research/clinical-research/vestibular-disorders-clinic
The purpose of this study is to use the information that the Doctors have found regarding the manipulation of cerebrospinal fluid pressure to improve the quality of life for those who have chronic, disabling disequilibrium due to Meniere's or Ramsay Hunt Syndrome. It appears that, by accident, Dr. Gray found a direct relationship between abnormal spinal fluid pressure and such disabling symptoms as double vision, hearing loss and dizziness. Dr. Kaylie was trying different approaches to solving chronic disequilibrium for those who had herpes zoster oticus, aka Ramsay Hunt Syndrome (shingles of the ear). The inability of the brain to learn to compensate for the loss of the balance system in one ear led Dr. Kaylie to believe that possibly a mild form of viral encephalitis was to blame. In discussing his findings with Dr. Gray, it appears they came to the realization that rather than the brain stem being to blame, that perhaps it was the CSF pressure. Thus the study was started, in August 2010 when I had my lumbar puncture. My opening pressure was 22 cm of H2O (10-18 is "normal"). My pressure was reduced to 18 and I was started on the diuretics Diamox as well as the furosemide I was already one. In less than 2 weeks I was feeling the difference, but thought surely this must be my imagination. Wishful thinking at best. It was as if the sun came out and burned off the fog (brain fog is a BIG problem). My symptoms were being eased. In less than one month I was 100% symptom free. I remained that way for only 2.5 months when my symptoms started coming back. I had another tap, in December, where the pressure tested ar 21.75 cm. Again the pressure was reduced, but not by much (I found out later) because the Docs wanted to see if the meds would lower the pressure enough to get the good results and to make sure I was not influenced by the placebo effect. I did not get much improvement, at all. Now I will be doing tap #3 on March 7th, when we will then hit my system hard with meds to try to keep the spinal fluid production down.

http://www.dukehealth.org/services/otolaryngology/programs/vestibular_disorders

 

These two Doctors are being very diligent in their research. They are trying different approaches and tailoring their program to help each patient on an individual basis, as well as the group. They have already found that one person's "normal" CSF pressure may be within the "normal" zone. but when manipulated by raising or lowering the pressure, they can bring on improvements (as well as make them worse).
They are also working with Doctors outside of the North Carolina area so that other patients may be helped and included in the study.
While it appears that this entire concept is not brand new (Dr. Ryzeman of Ohio has been doing this also), they are the only actively recruiting team that I am aware of. Once the sample of patients and their results is large enough, they will publish their findings.
Feel free to have your Doctors contact them for more information.

 

Are you nervous having so many lumbar punctures??

This is really interesting and I look forward to hearing the results of the studies. Thanks for sharing the info.

 

I have heard and read about this in great detail,
it is fasciinatimg stuff. It I a known fact that too much spinal fluid or too little can cause symptoms directly equivalent to mm. It is also known ha just because you are within normal limits does not mean anything, because everybody has a different normal.

I believe Skye is very educated on this and may have even talked to dr grey several times, hopefully she will come along and telll us more.

If you have mm sympoms it could very well be due to increased spinal fluid pressure.
Things such as head trauma, car accident, whiplash can cause increased spinal flud pressure and thus mm symptoms.

This is fascinating stuff as many will mm have had their symptoms dissappear after seeing dr grey at duke.

Good stuff--

 

Fascinating...

Thanks for taking the time share it with us!

 

Interesting... I had spinal meningitis many years prior to the onset of MM. This could very well explain my case too. Will have to ask my Dr. about it. Thanks for sharing!

 

Otter95,

I would pribbly dr grey as she is at the forefront of this, many have lumbar test and if the person test in normal range they assume everything is fine.

Dr Grey has found out even though you test in normal pressure range there could still be problems because everybody has a different normal.

Example I may test a 20 which traditionally may be considered normal, but based on certain testing, developed by dr grey, my normal should be 15. I do not know how she determines what is your normal.

She will take phone calls and answer questions. Very nice lady who is dedicated to finding solutions to possible causes of mm. She has helped many people with mm live symptom free and restore hearing.

 

Thanks for the suggestion, bulldogs. Definitely something I feel is worth looking into. I will post an update on what I find out.

 

I had my third spinal tap this morning. The opening pressure was 23.25 cm. of water, my highest reading to date. Dr. Gray drew off a lot of spinal fluid and the closing pressure was 16 ("normal" is 10-18 cm of water). I noticed an immediate improvement in my eyesight. Things have become clearer, especially the edges, the blurry I have been having is much improved. The double vision is still there, but not as "heavy" a shadow as was before. Because of the improvement and the fact that she drew off so much CSF, Dr. Gray decided to take my pressure down to where the improvements began, at 16. We are trying the diuretic Edecrin to see if we can use it to keep the pressure down/go lower for more, faster improvements. Both Dr. Gray and Dr. Kaylie are so pleased with the results they are seeing. Everyone they have tested through taking the spinal pressure using the spinal tap has had improvements. That is 100%!! But again, it is the keeping the symptoms at bay that is the trick. Some are currently stabilized on the Diamox.

 

This is amazing! I was born with Spina Bifida and also came down with Spinal Meningitis. I have a non-functioning shunt that used to drain the extra spinal fluid from my brain but stopped working at some point and I really could not tell you when it stopped working. Lately I have been seeing double for no reason and my vertigo attacks have been horrific. Along with the spinning, up and down and not side to side, I also see double and cannot control this double vision while having the vertigo. I have often thought that this all may be due to my birth defect and the shunt not working anymore. I have a strange feeling that too much spinal fluid may be causing some of my problems. Thanks for posting this article.

David.

 

Why do they think your CSF pressure is so high?

 

Yes, I have been corresponding with Dr. Gray. It's all very interesting stuff.
It seems that everyone has their own unique "normal" levels of pressure, and Dr. Gray is one of the first to recognize this. By helping find your true "normal' range, she believes she can help minimize some of these awful symptoms, including hearing issues, dizziness, vision trouble. I'm working with a doctor she directly trained out here in Utah, and may look into having this done.

If anyone has any specific questions, let me know and I may be able to also help answer them.

 

Hey Wylee, it's the eighth, how'd it go yesterday?

 

Hi,
My name is Wendy and I am a patient of Dr. Kaylie's and Dr. Gray's, just like Linda is. I have bilateral Meniere's.

My original lumbar puncture gave a reading of 15, exactly in the middle of the normal range of 10-20. After the puncture I wasn't feeling great, so Dr. Gray added some artificial Cerebral Spinal Fluid to see it that would help...all of a sudden I could hear her talking behind me and I hadn't been able to just moments before!! I felt great that day, but that night my fluid started to drop again and I had the worst vertigo attack. We set up an appointment to patch the leaks I had...I asked her what if I didn't have any leaks, and she said, "You Will." And she was right.

I went in for a myelogram, and she found 6 leaks, at this time she patched 4 with my own blood. I felt great immediately. And for the next 10 days I felt more normal than I had in years...but the symptoms came back. The blood patches didn't hold.

In January I went in for another patch session. This time she used Tisseel to patch me up. She patched 5 leaks this time, well 6 if you include the leak from the lumbar puncture she did at the start of the session. It took longer for me to feel better this time because they weren't adding so much fluid back in like they do with the blood, so my CSF had to build up on it's own. It took about 2 weeks for me to feel the full results. She thought she was going to have to go in and patch the last leak, but I was taking Topamax and it lowers your pressure, when I went off of it, I felt great.

I'm still feeling wonderful. NO VERTIGO. Very little disequilibrium. The hearing in my right ear didn't come back, but the hearing in my left ear has been stable. They think my right ear just sustained too much damage after the many years of having attacks. I still have tinnitus in my right ear, but my left ear is either having no vertigo, or it's so much quieter than the right I just don't notice it. Either way, I'm happy. I don't have as much of a full feeling in my ears, the right ear still has some, but not like it used to.

I am feeling so much better than I was! I couldn't be more thrilled.

Just a couple months ago, I could barely get from my bed to the couch. Now, I'm driving again, talking on the phone, exercising, cleaning my house....these are things I been able to do for nearly a year.

If anyone has any questions please feel free to get in touch.

I do have a blog, and you can see pictures of me getting my patches there, and you can read all about my experience with all of this. http://picnicwithants.wordpress.com
Here's the direct link to the post with the pictures. The pictures were taken during my first patches. http://picnicwithants.wordpress.com/2010/11/27/pictures-taking-during-the-blood-patch-for-csf-leak/

 

I contacted Dr. Kaylie. Apparently there is no one doing this in my area and I will have to wait until it becomes more widely available. If it were one-visit treatment I'd be willing to fly to North Carolina for this, but it looks like you need to make multiple visits over time. Looks very promising and I will keep looking back here for updates. Thanks!

 

Oh Otter95, I am so sorry to hear that you may have to keep waiting to see if you are even a good candidate for the CSF pressure check. Perhaps you can find a Doctor in your area who, like Skye's Doc, is willing to learn what the Duke Docs are doing and try to duplicate it. The main thing is the willingness to learn. I think many doctor's have such huge ego's they can't admit there is something they don't know.

 

Today is day 3 post tap for me. I am continuing to see improvements very rapidly. Unlike the first tap that took almost 2 weeks for me to realize just how many changes had occurred, this time, with the lower CSF pressure, things appear to be changing very quickly.
I drove yesterday, I did 95 miles without getting the brain mush I used to get. I felt a little brain fog, very little. I had no trouble determining which lane approaching traffic was in at cross streets. I walked at the big box store, still using the shopping cart, but I was able to scan the shelves without getting nauseated. Tinnitus is barely there. Vision continues to clear. Yippee!!

 

Yay for Wylee!!! ;D ;D

 

Wonderful!

 

How do I find out who could be doing this in our part of the world? Florida! Right now I am so ready to feel human again.