I hope they find your answer. It sure sounds like maybe this is something that could help you as well. Dr. Kaylie is super nice, smart, and I am sure will be able to tell you if your condition seems vestibular or more central like you would see with csf leaks. Lucky that you live in North Carolina, it is a beautiful State, and you are close to such a great medical facility! If he thinks you should be checked for a csf leak, then you will need a radiology appt with Dr. Linda Gray/ Leithe, which may take a while if that appt is not set up yet, but will be well worth the wait. She is amazing, she is a top neuro-radiologist in the country and also very caring and upbeat!
To update on my status, my csf pressure went too high, which was expected while my body learns to quit compensating for the low pressure. I went on diamox for 48 hours (last one today). The diamox makes me super tired, nauseated and I feel like I have novacaine in my lip and my foot feels asleep, so glad I can go off of that now and see if I can feel wonderful again. My vision still seems good, and I can speak more fluently without groping for words like a dementia patient
I am still feeling drained from the procedure. (Without going into too many details, if you plan to be traveling 2 of 3 days, and getting pain meds, anti-nausea meds, and add diamox on top of that, drink plenty of water and take some stool softeners)
My back in general feels bruised and sore, I feel like I had an upper body workout, and got bruised at the same time. This was definately harder on me than the blood patch. Not sure if it was the number of pokes, or the Tisseel, or the fact that I traveled all day the next day whereas last time I spent some time at Wrightsville beach on the NC coast before traveling home…
I am just taking one day at a time, and enjoying each minute that I have a clear head.
The reputable online sources I’ve checked–NIH, Hopkins, Merck–talk about low CSF pressure causing headache, nausea, maybe vomiting, tinnitus, visual effects, vertigo, a few others. However, they don’t mention brain fog. Anyone know, is that associated with the dx, or only with MAV?
I definitely had brain fog, hence the screen name. I assume that brain fog is part of the headache. If you read the article from Dr. Silver, you will see all of the symptoms associated with the word “headache”.
By the way, the symptoms of high and low csf pressure present with similar symptoms. The theory behind the study at Duke is that abnormal csf pressure could be the root issue behind the dx of MAV for many people, and the results appear to be supporting that theory. It will be interesting to see the study. I will try to find out when it is expected to be published.
As I continue to recover, I am making note of all the little things that add up to amazing.
I went to my doctors office with the crisscross carpet, and it didn’t cause nausea and confusion- imagine that!
I made a soup recipe with 15 ingredients, and didn’t have to go back to the instructions 20 times!
I put together a 1000 piece puzzle in 2 days- the same puzzle I worked on for six weeks and gave up.
No head pressure or buzzing feeling to drive me crazy.
I walked from my parked car across the parking lot to the store and was actually able to process the whole scene and not just boldly walk out and hope no one would hit me.
Still a bit of spacy feeling by the end of the day, but hoping that will fade too as my brain adjusts to the new old me.
I’m particularly interested in learning how often they fail to find abnormal CSF pressure. And how often they find abnormal SCF pressure in people who are asymptomatic. Dunno whether I’m going toward “to a hammer, everything’s a nail” or what. Masybe I’m just hesitant to go, “Hip, hip, hurrah” as soon as I read that Vitamin C cures the common cold.
I am not trying to make you a believer, I am just recounting my experience to the best of my ability in case others might have the same issue. I think high pressure is more common, and people get instant relief when fluid is drawn off. (Then they have to use meds to keep it lower) Whereas my issue was definitely seen on XRay. I had a leak. I asked the same question of Dr. Gray. Do lot’s of normal people walk around with leaks? She answered with an emphatic “No”. Since the increased fluid instantly makes me feel better, and I have been able to sustain this feeling better after the patch. I believe that this must have been the root cause of my symptoms.
I do think this path is not for everyone. It has been emotional, there are no guarantees (evidenced, by my fist blood patch that failed within a few weeks) It is a tough procedure to go through (especially the 3rd time) But for me it was worth it, even if it is just for these few days of feeling better. I am taking this an hour or a day at a time, and hope I wake up feeling good and it lasts throughout the day.
I think the only place I would trust getting it done is at Duke at this point because the large range of normal pressures could rule this out for some people that Duke is able to help, by looking for the patients normal pressure. I had to travel a long way to get to Duke, but it was worth it to me.
Wow, that is fantastic, I am so happy that you were able to accomplish so many things.Must be thrilling for you.It gave me a thrill vicariously to read your post.
I do hope you continue to do well.Thanks for updating!
You may have seen in my other posts, that the good times lasted only a few weeks, and then a general decline. I seem to have bottomed out a little better off than I was before my patch. Having those amazing clear-headed days gives me so much hope. My imbalance has been relentless effecting every day, and although I don’t have terrible spins like many of you, the constant nature really wears me down. It was so nice to have a respite from it all. (although short)
Next week I will be back at Duke to try another patch. Dr. Gray said she is getting the superglue ready! I am not sure why my dura is not healing well. Since this all started, I have had issues with not healing (A small skin surgery on my arm took 3 times too long to heal) so I plan to take it really easy after this time, and also may try some acupuncture in support of healing to see if that helps it stick for long term.
I can’t wait for more clear headed days…the countdown begins
I know there are others on this board who have seen or will be seeing Dr. Gray due to possible csf issues. I just want to give you hope that this can be a true fix if csf is your issue. Most people with low csf are fixed with the first patch.
please keep us posted- the both of you! i am in the process of switching my hmo insurance to a ppo and will have to wait and see if traveling to duke will be in the plans and coverage.
Back from my whirlwind trip to Duke for an appt. with Dr. Gray. They really went to town gluing up my neck… YAY, it is tender, but worth every bit of discomfort for this wonderfully clear head. They used a combination of Tisseel and blood in three spots in my neck. The drugs worked way better than last time, so it was easy to get through the procedure.
It is so hard to explain the difference, but I just feel completely like myself…(when I am leaking spinal fluid, I am just not right). The main difference is in the way I perceive what I see. When I am patched up everything is easy to view, and clear. Before the patch there is just too much to process, so I don’t really experience sight in a normal way. It is like being accosted by having to see what is coming at me, I constantly squint to try to tone it down and to decrease the visual field. I honestly forget what normal is… but every time I have gotten patched up, I have the same extraordinary change with the vision.
It also changes my mood, my voice, my ability to think clearly, and my balance, oh and the pressure at the base of my skull is gone too. It is astounding, the difference. My close friends and family notice the difference right away.
So now the challenge is getting this patch to stick. I don’t know why this has been such an issue. Dr. Gray said the neck is highly mobile area of the spine, so maybe that is not allowing the patches to fully heal. I really want to do something to change the course so this sticks. I am going to do general acupuncture while I recover to build up my reserves to support healing. Dr. Gray mentioned there might be a drug that has been used to speed up healing, I am going to follow up with her on that. I also have been told that my neck is “hyper mobile” due to chronic issues since whiplash 30 years ago. I am going to ask about restricting my movement further than I have the past two patches.
Wendy posted this at m.org thought I would cut and paste it here.
As an update, the results of the DUKE research project are being presented in April, 2012, at the Spring meeting of the American Neurotology Society.
Below is the abstract:
Cerebrospinal Fluid Pressure Abnormalities as a Cause of
Chronic Subjective Vertigo with Migraine or Head Pressure
H. Wolfgang Beumer, MD; David M. Kaylie, MD
Linda Gray, MD; Peter Kranz, MD
Objective: The normal range of CSF pressure is poorly defined. Abnormal pressure for some may be
normal for others. The objective is to determine if altering the CSF pressure in patients within “normal”
range can relieve symptoms of chronic subjective vertigo with migraine headache or head pressure, with
or without other otologic complaints
Study Design: Prospective, IRB approved study
Setting: Tertiary center
Patients: Patients with chronic subjective vertigo, migraine or head pressure, with or without other
otologic
complaints and clouded mentation
Intervention: Diagnostic lumbar puncture with opening pressure measurement and addition or removal
of CSF
Outcome measure: Self-reported symptom score immediately after lumbar puncture
Results: 46 patients met entrance criteria. Average opening pressure was 270 mmH20 ranging from 110
to 265mmH20. 27 patients had immediate symptom improvement with removal of CSF - opening
pressure for this group averaged 217mmH20. Eight had complete resolution of symptoms, 14 had
significant improvement and 5 had mild improvement. Eleven patients had improvement with addition of
CSF, 3 with complete resolution of symptoms, 4 with significant improvement and 3 with mild
improvement with CSF pressure averaging 157mmH20. The opening pressure was significantly higher in
group that improved with CSF removal. Eight patients had no improvement with addition or removal of
CSF. 7 reported no change, one reported significant worsening.
Conclusion: Chronic subjective vertigo with migraine or head pressure, clouded mentation with or
without other otologic complaints is often caused by abnormal CSF pressure. Removing or adding CSF in
many of these patients provided immediate relief of their symptoms. Lumbar puncture should be
considered in these patients.
Define Professional Practice Gap & Educational Need: Lack of contemporary knowledge of treatment
for chronic subjective vertigo and migraine headache leads to many patients receiving suboptimal care
Learning Objective: To learn about potential causes of chronic subjective vertigo with migraine and how
to treat it
Desired Result: Attendees will be able to apply the knowledge they gain in the treatment of patients with
chronic subjective vertigo
IRB or IACUC Approval: yes
Thanks for posting! This is great! Maybe more people will gain access to this type of treatment as a possible solution to their migraines and imbalance!
