I am going to see Dr. Kaylie at Duke next week. I hope I can find some help there. When I called to inquire about his study, he actually got on the phone and listed symptoms, and it was me exactly. Finally a doctor who gets it. He also corresponded via email several times. He seems like a very caring doctor.
Has anyone else been to see him?
Best of luck to you!
Please keep us posted!
Kelley
Best of luck and please keep us posted!
I am SO interested in the CSF “studies” he is doing. I would love to do that but would have to pay out of pocket and don’t even want to imagine what that would cost, but then again would consider paying if it would stop the madness.
So far so good. I met with Dr. Kaylie, who is truly a nice guy, unassuming, and just kinda seems to get it.
I had provided him my symptom list, but he also wanted to hear it directly from me. I have similar issues as other people who have an issue with elevated csf pressure. People who have this list of symptoms have been previously diagnosed with many things, including MAV, disequilibrium, etc.
So tomorrow I go in to see the radiologist who has been studying the neurological effects of high csf pressure. (Dr. Gray) Basically, they should know right away if it has helped because people usually feel better right away if high csf is an issue for them. If that turns out to be the case, then they will try to manage the pressure to keep it stable using medication. (In cases where meds don’t work, a shunt would be the next step)
After radiology, I go back to see Dr. Kaylie, and then to a neurologist. (Or he may refer me to a neuro back home) He said once high csf is diagnosed, it is an issue that any neurologist can manage (they do this all the time). So that was good news!
North Carolina is lovely by the way. Everyone is so polite and friendly
I hate to wish for something bad like high csf pressure, but at least it would mean a solution to this disequilibrium and all that comes with it…
I will post again after the appt.
Could you please share with us what symptoms you experience?
What is high cfs?
I haven’t heard of this study.
Thanks
Hello all,
Yesterday was a travel day and today I have to get back to work. It was a great trip to Duke. I am still waiting on some test results. I will elaborate more by this weekend at the latest.
Can’t wait to hear!!!
Hello all,
Sorry to be so slow to add an update. I think that I did find a solution to my problem at Duke, but not a resolution yet. For 11 months, I have had symptoms that take up two pages to list, but the main issues have been brain fog, (difficulty processing busy environments, standing and talking hard) tinnitus, Nausea, sensitivities to lights, sounds, wind. Imbalance, especially when I don’t have reference points, such as wide open spaces., or when I am moving, or things are moving around me. I have a hard time following conversations. Unable to do lot’s of fun stuff I enjoy, like tennis, and playing games, etc. I have also had some weird symptoms, like, fluctuating blood pressure extremes, extreme sensitivity on my hair follicles (I know it sounds weird) Pain in the back of my legs. This all started 11 months ago when my world suddenly tilted to one side, and I thought I was falling off the bed. That began a journey of doctors and tests and 6 months of VRT that made me feel worse every day. My extreme tilt of the world seemed to morph into a chronic imbalance and brain fog.
Dr Gray, at Duke is a Neuro-radiologist. She has written a paper on the issue of csf pressure (low or high) as being a factor in many of the neurologic symptoms of people who have been previously diagnosed with balance disorders, MAV or other things. Dr. Kaylie, a neurotologist at Duke has referred many patients to her, and has seen them be helped by regulating the csf pressure to within a normal range for the person. I went back to Duke and first met with Dr. Kaylie. What a great doctor…honestly seems to care, and he’s a doer! The bigger treat was meeting Dr. Gray. She is smart, friendly and another “doer”. She tested my csf and thought it was low, so added some fluid, which provided relief of my symptoms. I could walk and read the signs at the same time! Unfortunately it was not long lasting, (which she knew it would not be) so I will need a csf blood patch. I might have just had the blood patch while I was there, but Dr. gray noticed something on my old MRI that was cause to hold off until more was learned.
The reason I held off in writing is that my case is complicated by another finding on the MRI which Dr. Gray noticed right away, but had been overlooked by 3 different doctors. I got another MRI while at Duke, and the issue seems to have progressed a bit, and may be part of the issue causing the csf leak. She has some theories about the issues, but I some some blood tests, a new MRI and she has sent this off to another specialist. Since I don’t know yet what it is for sure, I really don;t want to provide the possibilities here.
So I have something new to explore, but at least I know that the low csf is causing my symptoms, so once they are sure what is causing the low csf, we will know what needs to be done. I will be going back to Duke to meet with some other specialists. I am still waiting to hear back before I schedule the trip.
In the end, this is what I found out:
csf pressure issues can present with a variety of symptoms, but my symptoms were classic for the problem (brain fog, imbalance, tinnitus) I imagine that this theory could solve a lot of problems that seem to be neurological in nature. My balance testing had come out abnormal, but there were no definitive findings to positively diagnose a vestibular issue. I had several diagnosises before this; Right otolithic dysfunction. BPPV, probable MAV, vestibular hypofunction…there were others I think.
So I am still in a little bit of unknown territory, but I think if I can get a handle on the root cause of my low csf pressure, and fix that cause, I can feel a relief of the symptoms that are really making it hard to get through each days activities.
I will be heading back to Duke (soon I hope) and I am not too sad about that as N.C. is truly a beautiful place, with very nice people. The southern accents and the southern charm works on me every time!
oh this is very interesting i may mention this if i see the neuro again. I have had some blood vessell issue come up on my mri that hasnt been picked up on previous mris. Id love to know the outcome. i wouldnt fall off my chair if i had some cfs probs im still convinced theres more to the whole story of mav… l also have vest nerve damage
thank you so much for sharing your story. i am glad you found some answers and thank goodness they spotted some problems that other doctors carelessly missed.
i just have a few questions since i am very interested in doing this.
thanks!
Hello,
I thought I would answer your questions.
1.) Dr. Gray used a local for the spinal tap, so there was a slight sting with the first injection. They did have a difficult time getting in for some reason, but it is under CT guidance. I think the tube they inserted to begin with was flawed, so they had to redo…they mentioned it was the first time that had happened. When I mentioned that I was feeling some discomfort, she was able to add more of the local, so it was not a big deal. Most people with MAV have high csf, since mine was low, she added fluid, and that caused some lower back aching type discomfort. I think I probably had the needle in my back about 20-30 minutes. The pain was never sharp or terrible, it was more pressure, and I guess I had some fear of the sensations (knowing they were delving into my spine) but I would give the overall pain a 1-3/ 10. (not bad)
2.) I was better afterward. Since my pressure was low to begin with, she added fluid. Then she asked how that felt. It was really hard to discern, because I felt the achy back, and I had a slight headache, but I could tell my vision was better, in that I could process a larger area of my visual field, my tinnitus was gone, my nausea gone. After about 45 minutes in recovery, I had an appt. with the Neuro-otologist again, and the way to get there was a very very complex set of long hallways and tunnels. I noticed that I could walk and read the signs at the same time. I didn’t weave down the long corridors, I didn’t have to squint when there were bright lights or busy patterns along the way. I had a headache, but I was able to function better. Dr. Kaylie mentioned that my speech was more fluent, and I was cautiously optimistic…I was feeling better, but I had a headache…Dr. gray mentioned she may have “over-filled” me a bit, and that was causing the headache. but she said that if I had high csf, I would have had worse symptoms with the added fluid, so since it made my symptoms go away, I must have a leak. To detect a leak, you need a myleogram (CT with contrast guided study of the spinal fluid) to determine where the leaks are and then a blood patch. I would have needed to stay another week. While in Dr. Kaylies office, I got a message that Dr. Gray had ordered a new MRI, I walked back over to her office…through all those long hallways, and feeling even better. That’s when she told me she saw something on my past MRI that had been missed, and could be a cause of my low csf. So I had a comprehensive blood and urine test, and we decided to wait on the blood patch until we got those results. So now I am waiting to get back for the blood patch after all else is determined.
3.) In my case, I have chronic imbalance, which I think is different from dizziness. I do get dizzy sometimes, (daily but not constant) but it is more a slight tilt to the world that I have partially compensated for, but continues to cause extreme brain fatigue. (Hence my profile name) I felt better for 2 days. Dr. Gray was surprised when I felt better the second day, she assumed I would be back to chronic imbalance in one day. The main thing that was noticeable to me was that my vision was so much more acute! I asked Dr. Gray if others had commented on the vision, and she said “yes”, that appears to be a common reaction.
4.) I don’t know what you mean by “rocky”. I feel imbalanced chronically… it feels visual…like I am not interpreting what I am seeing correctly. I get the feeling of floating when I change my position, like from standing to laying… I cannot stand looking upward… I also can’t tolerate keeping my head still but moving my eyes to look at something. (try it by focusing on a point in front of you, and then without moving your head look as far as you can to the right and then back to the object, several times) For me, this causes me to become extremly nauseated, and imbalanced, and extreme brain fog.
I hope that answers your questions. My family kept telling me that I need to find a Dr. House. I think I found my Dr. House… in Dr. Gray.
Thank you so much for sharing! I really appreciate you taking the time to do that. That makes me feel a little better that the pain wasn’t so bad. It sounds like they are still learning a lot about this themselves and of course everyone is different. That is so interesting that they have found that most people with MAV have higher pressure. I get SO sick when I’m pregnant-like want to die sick- and Dr. Kaylie mentioned that it did not surprise him because the intercranial pressure gets so intense so it must rock my world. Plus after my epidural and my spinal tap was when I had my worst vertigo attacks of my life. It’s all a big puzzle and I think they could definitely give me some answers. I’m just wondering if I could have low or high pressure though?! Only one way to find out and I will be calling to see if my insurance is covered.
I am so happy that even for 2 days you had relief! Congrats! That is a Godsend!
I am headed back to Duke this week. I will be getting a blood patch, and hoping that will alleviate at least some of my symptoms, for good. I will also be seeing a neuro -endocrinologist to check in about the issue on my pituitary that was on my MRI.
I have been feeling so sick the last three weeks, and just so fatigued…I hope this works!
Hi everyone,
I posted on another thread, but thought I would post here as well, which is where I meant to post. 
I went back to Duke and had the myleogram where they found two leaks in my neck area, which they patched with blood.
I am two weeks out, I am doing better, but not yet perfect. Many of my worst symptoms are gone, by I am still fatigued and have some imbalance, but not as bad as before.
I am just kinda laying low and waiting for my brain to adjust to the new csf pressure.
I was sad to see that the gal who promoted this treatment to begin with has had a significant relapse. Just reminds me that this may be a clue into the issue, but there is much more experience that is needed to know how this will go for the long term.
So trying to enjoy each day to the fullest possible.