I am in Austin, TX and am trying to find a doctor in the area (or anywhere in Texas) that is an expert in the area of low pressure headaches and CSF leaks. I battled migraines for years, but 8 months ago they turned into a constant pressure headache that never goes away and does not resemble a migraine. Migraine preventatives and abortives do not help the headache. I visited a headache clinic where I had many IV influsions for headaches, none of which helped. I have a lot of other strange symptoms with this headache including chest pain, ear pressure, ringing, and whooshing, and fever, tingling in one hand, neck pain, floaters in my vision, and others. I often have a burning sensation which runs from my neck to my forehead.
I just had a lumbar puncture which showed that I had a pressure of a 2, which was extremely low according to the doctor doing the procedure. However, my headaches are not positional...I don't really feel better when I lay down. My MRI is also normal and doesn't show any sagging or enhancement of any kind. However, I also have been getting a strange taste in my mouth for over a year whenever I bend my head forward and am wondering if this could be a leak. My current neurologist does not think that my low spinal fluid pressure could be causing my headaches, but she also does not seem like an expert on the subject. She literally had to pull out books and read up on the subject during our office visit. So before I rule out the extremely low SF pressure as the cause of my headaches, I would like to consult someone that knows what they are talking about.
Does anyone know of any doctors in my area? Does anyone have any insight on whether this could be a leak or low pressure headaches? Or is there no way that the low pressure could be my problem because my headache are not postional?
I feel so bad that no one has been able to refer you to someone in your area, so I thought I would just share my experience for what it may be worth.
The best I can do is recommend Dr. Linda Gray-Leithe, at Duke University Hospital in Durham, NC. Her phone # is (919)684-1185 or (919)684-7338. I sent her all my medical records and films, and after reviewing she contacted me and I flew down and underwent additional testing at Duke last December. She is one of the few in the country who specializes specifically in spinal leaks. Hopefully you will get some answers by her or thru her referral.
I have continuous low pressure headaches, which were positional for 3 years but now come on at varying times. CSF leaks are extremely difficult to diagnose, but it seems after all the research I have done that Dr. Gray may be your best option for some answers. I agree - many neurologists are lost with this condition. My neuro admitted it is a problem "above his pay grade"! Kind of funny, if you think about it. Then again, chronic headache sufferers like us have to keep a good sense of humor!
Good luck - I will be praying for you.
Thanks Marianne! I appreciate the advice. I think that I will contact Dr. Gray-Leithe. I have also contacted Dr. Schievink in LA and am going to send him my records and films as well. It looks like he and Dr. Gray-Leithe are the two real experts in the country. I have no idea if I have a leak since my constant headache is not positional, but between the low spinal fluid pressure and the strange taste in my mouth that I get from time to time, I at least want to consult a specialist! I need to know if there is a possibility that I have a leak, or if there is something I should be doing to treat the low CSF pressure.
The neurologists here in Texas that I've consulted with so far have been useless on the subject! They just say that low CSF pressure is extremely rare and that they have no idea why I have it...then they ignore it and keep me on the same meds that are not working! It's infuriating!
Did you find a leak or treatment that worked for you?
Take care. My prayers are with you as well.
Sorry I haven't been on this site in awhile!
To answer your question, no - I have not been able to determine if I still have a CSF leak.
Dr. Leithe located 3 leaks in my thoracic spine in 2010 thru a lumbar puncture, and she repaired them with blood patches. However, either those leaks were not the problem, or were just an incidental finding. So I'm still in the same condition - daily headaches at very erratic times, relieved with Percocet and rest. Despite my arguments, I have been assured by my GP and neurologist that daily Percocet is not a concern! But I refuse to hang around and not enjoy life - therefore, drugs have to be used for now. In addition to the Percocet, I take Cymbalta for the anxiety and for the nerve pain - that helps.
I am happy to see you are also checking with Dr. Schievink at Cedars-Sinai. He actually called me to discuss my case, but I opted to see Dr. Leithe instead. You're correct - those seem to be your best choices for specialists in this condition. I wish you all the luck in finding relief!
I am in Houston. I am a spontaneous spinal leaker. My neuro is Dr. Raymond Martin. He is the director of the UT Neurology Clinic. After numerous physician encounters and over 2 years, I found him. He was able to recognise my condition in a matter of minutes. He was very proactive in getting me imaged and treated ASAP. I am very happy with my care here. Let me know if you need any help in getting to him. Also, until my symptoms worsened dramatically this past June, I was having intermittent ear pressure the past couple of years. It has now been determined that all of my symptoms in the past were due to slow, intermittent leaks. He even referred me to the UT ENT to rule out anything else (although I saw my local ENT in the past and it never occurred to them that my ear pressure was from a leak).