Treatments for Meniere’s Part 4 – CSF adjustment

If you’ve been following my blog you probably already know much of what I’m going to say here.  If you haven’t been following my blog, you can read even more about my experience with this treatment over the last few months.

In November of 2009, I started seeing Dr. Kaylie at Duke University Hospital’s Vestibular Clinic.  “Physicians at the clinic conduct clinical research to learn more about vestibular function in people who suffer from balance disorders such as Ménière’s disease, migraine-associated vertigo, and viral inner ear diseases. Several studies are ongoing that will provide insight to help improve therapies.”  They are also “conducting research into chronic, disabling disequilibrium after Ramsay-Hunt syndrome and Ménière’s disease.”

In October of 2010, I went to see Dr. Kaylie about possibly getting the Endolymphatic Surgery in my left ear to try to control the vertigo I was experiencing.  At this time he asked me if I’d rather have the surgery, or try to find the cause of my Ménière’s.  Of course, I chose to try to find a cause.

Dr. David Kaylie and another doctor at Duke, Dr. Linda Gray Leithe, are doing research trying to find a cause of Ménière’s.  Dr. Gray is a neuro-radiologist, she is researching how increased or decreased spinal fluid pressure can cause different disorders, including Ménière’s Disease.

On November 3, 2010 Dr. Gray performed a lumbar puncture on me.  Before the procedure she told me that the normal rage for Cerebrospinal Fluid (CSF) Pressure was between 10 and 20.  I measured exactly in the middle, 15.  However, Dr. Gray doesn’t think that everyone should have the same “normal” baseline.  She does empirical testing to find out if her patient may indeed have low or high pressure even though they have “normal” readings.  First she added some artificial CSF and all of a sudden I was able to hear her talking behind me, when I couldn’t just seconds before.  My dizziness disappeared, and I felt great.  I was so excited.  (If this hadn’t worked she would have given me a medication to lower my pressure to see if it helped, but this wasn’t necessary.)

That night, I had a horrible vertigo attack.  It lasted for hours.  After talking with Dr. Gray she felt that the fluid she had added was leaking out and that caused me to have the attack.

Photo taken my the Blood Patches.

On November 24th, she did another lumbar puncture, I was at 17.5.  She then performed a Myelogram.  During the myelogram Dr. Gray inserted a contrast dye in my spine, I then had to roll over and over and lift my butt in the air…to make sure the contrast dye was distributed evenly.  I was then given a CT scan that showed I had 6 leaks.  She then patched 4 of leaks that they found.  She didn’t patch them all because it could have caused my pressure to get too high.  She used my own blood to patch the leaks.  Immediately after the patches I could shake my head and not get dizzy.  I felt so much better…I felt normal.   (to see more photos and read more about this procedure see my post from Nov. 27, 2010)

Unfortunately, just 10 days after the blood patches, I started to have symptoms again.  Dr. Gray wasn’t sure if I had low pressure again or if I was starting to have high pressure.  So I took some of the medication that lowers your pressure.  I didn’t feel better, if anything I felt worse.  It took much longer to schedule my next lumbar puncture and patches because of the Holidays.  I had a very hard time during this wait.  I felt I had been abandoned.  The depression that consumed me was horrible.  Finally, I started to take the advice of my therapist and other Ménière’s friends, I decided to accept my disease.  I believe the Ménière’s will always be with me.  I don’t think I’ll ever be happy with this disease, but I accept that it is a part of me.  Even when I’m feeling good, I know it may come back.  This has really helped me to overcome my depression.

On January 28th 2011, Dr. Gray did another lumbar puncture and patched my leaks with something called Tisseel, a tissue glue.  Since she didn’t use the blood patches I didn’t have any extra fluid added during this patch.  It took me about 2 weeks to start feeling a lot better.  (To read more about this procedure please see my post from Jan. 28, 2011.)

I am now feeling so much better!  NO vertigo!  My hearing in my left ear is staying up and stable, my right ear’s hearing didn’t come back, and I still have tinnitus.  They think my right ear was probably just too damaged after having so many attacks.  I can deal with the symptoms I have left.  I’m leading a much more “normal” life.

Since the hearing in my right ear has stabilized, next week I will be evaluated for hearing aids.  I’ll let you know how that goes.

I’ve been asked a few questions about this procedure, I thought I’d try to answer some of them here.

  1. What caused the leaks? I don’t know.  It could have been caused by an accident, or it could be simply genetics.  Unless CSF leaks are found right after an accident, they rarely figure out what causes them.  It’s funny, until someone asked me, I didn’t even think to ask.  I was just so happy they found something tangible that could be causing my symptoms.
  2. Do my doctors think this could have been the cause of the Unilateral Ménière’s or was it something that happened later on? It’s my understanding that they are thinking this would have been the cause all along.  I know they are not just testing this on bilateral patients but also on unilateral Ménière’s patients as well.  Only one person they tested ended up not being helped by this at all.
  3. What’s next? Well, I have the evaluation to possibly get hearing aids next week.  But I don’t see Dr. Kaylie again for 6 months.  Unless something happens, then I’ll see him and/or Dr. Gray before then.  However, they feel that they know what is causing my symptoms now, and if I have a relapse they know what to do to fix it.  (Yes, I could get another leak at some point in the future.)
  4. What about people who have high pressure how do they treat them? I’ve met another of Dr. Kaylie and Dr. Gray’s patients.  She has Ramsey Hunt Syndrome and was the first person brought into this research.  She wasn’t responding to normal treatments, so they decided to try this.  She has high pressure.  She was put on medication to lower her pressure.  It worked for a few months, but it hasn’t been able to control her symptoms.  Recently, Dr. Gray gave her another lumbar puncture and lowered her pressure.  She is now on more medication.  However, she may have to have a little tube (called a shunt) put in so she can drain the excess fluid when necessary.  They only do this if a patient’s pressure is very high and they can’t control it.
  5. How can I find out more information about this procedure? Feel free to ask me anything about my experience.  Also,  Dr. Kaylie and Dr. Gray, don’t mind answering questions.  Just click on their names and it will take you to their pages on the Duke site, where you can get information to get in touch with them.  If you need to email them, just write to me and ask me their email addresses.

I’m sure I’m forgetting something, so if you have any questions, please feel free to ask.

Up Next:  Treatments for Ménière’s – Angelea’s Story

As always remember that different treatments work for different people.  I am not a doctor and I’m not suggesting to anyone that they should try this or any other treatment I’ve tried.  This series is only meant to allow people with Meniere’s to see how others have dealt with this disease.

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This entry was posted in Meniere's Disease and tagged , , by Wendy. Bookmark the permalink.

About Wendy

I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses. I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!

8 thoughts on “Treatments for Meniere’s Part 4 – CSF adjustment

  1. Wow! It is just so refreshing to hear something new about this Stupid Disease (my affectionate moniker for It). I agree 100% that accepting it lifts a big cloud from your life. I don’t like It and I keep searching for answers, but I accept that it is what it is for the time being and maybe, most likely, forever.

    The only question I still have is where were the leaks? In the spine itself, in the ear(s)? I have always had fluid sloshing around in my ear after an attack. I know it could be endolymph from the inner ear, but for some reason I always wondered if there couldn’t be a microscopic hole in there and that it could be CSF.

    You are so awesome for sharing this with us! And I am thrilled that you are feeling so much better.

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    • My leaks were in the spinal column. I’ll ask Dr. Kaylie about it again, but I think I remember him telling me that the cause for the vertigo is because the fluids in our ears mix. That happens when the endolymphatic sac gets too full of fluid it will leak, or burst. It heals back. I think that’s what he said, but I don’t remember exactly. It was one of the first visits, and I wasn’t hearing that well.

      thanks for commenting. I hope that answered at least part of your question. If there is anything else, don’t hesitate to ask. wendy

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  2. It´s very interesting to read about your treatments. I´ve never heard about CSF pressure and Menières before you´ve written about it. I´ll ask my doctor if this is something he has heard about. I guess it´s harder to be a doctor today when patients can read about treatments and their illnesses at the internet and maybe have suggestions about the right things to do. As you write – it´s important to realize that what works for one maybe doesn´t work for another. But I find it very incouraging to hear that you are feeling so much better right now. It gives me hope that there is a “cure” for all of us.
    Susanna

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    • Thanks Susanna, This treatment is still in the research phase. It has shown great promise, but I’m sure a lot of doctors will not have heard of it. I know some people are calling Dr. Gray and Dr. Kaylie personally, or having their doctors get in touch with them. I hope you can find more to help you soon! w

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  3. wendy,
    i’m so glad that you are continuing to do so well. this is wonderful for you and for your husband!! not to mention for future patients. of course, this has me wondering about my own pressures and the possibilities. it’s almost neverending when you start thinking about the “what if’s” of this disease. i guess the good news for me is that i’m in n.c. and if your drs would be willing, i could travel to see them. i already go to winston to w.f.u. so what’s another couple hours?? 🙂

    again, so very happy for you!!

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    • I didn’t know you were in NC. What a small world. I’m sure Dr. Kaylie, and Dr. Gray would be happy to see you. I think everyone who sees Dr. Gray for this has to see Dr. Kaylie first (there may be another doctor there working on this, but he’s the one I know.) What I’m trying to say it that I think she has to have a referral. But she will talk with you. She has talked with many people, so has he. If you want their email address I would be happy to send them your way.

      Good luck to you! wendy

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    • I don’t really see where this video fits on this post.
      Intercranial Hypertention or Hypotension can cause the same symptoms as Meniere’s. That’s the whole reason I’m going through this research.

      the video is interesting…but I’d take it with a caution.

      Like

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