Doctors good at dxing CSF leak?
 

My sis has a CSF leak, I think. The docs here in Lewiston have all given up on her. We're pretty much desperate-the last doc kicked her out of the office saying there's nothing wrong, just go to the pain clinic. :mad:

Does anyone have a good doc? We're in Idaho-She can't travel really far-but Wa, OR, MT, maybe a little further?

She can't work, but hasn't been fired-yet. I'm really worried about her-shes only 23.

Any help/ideas? Please??

Thank you!

hi
 

hi

Dr. Robert Wharen of Mayo Clinic, Jacksonville

Dr. Wouter I. Schievink,
Maxine Dunitz Neurosurgical Institute,
Cedars-Sinai Medical Center,
8631 West Third Street,
Suite 800E,
Los Angeles, CA 90048
Office (310) 423-7900
Fax (310) 423-0810
schievinkw@cshs.org

these doctors are best maybe worth a plane trip can give you more help if you decide to go to them were dose she think she is leaking
If you want to make an appointment or get more information about seeing Dr. Schievink, the person to call is:
Cherry Sanchez (she's his administrative assistant )
310-423-0814


kind regards vini

Dr Linda Gray at Duke Univ Med Center
Dr David Adams, chief of neurology, Univ of Miami Dept of Neurology

I have to give a 100% Patient Satisfaction Rating to Dr. Linda Gray/Leithe at Duke University Medical Center. She literally saved my life and has gone to great lengths to continue to provide follow up care the past two years.

Peter did you have CSF if so I could use some info for my son. Thanks

Love Dr. Gray!
 

Dr. Gray is a great doctor, I talk to her more than I talk to a lot of my friends. We have had quite the adventure over the past few months. My Dura was a mess of leaks, she worked me in the day before she was going on vacation and then called me every day while she was on vacation to see how I was feeling after the patches. A one in a million doctor! I also give her a 100% Patient Satisfaction Rating plus 10 bonus points for going above and beyond.

Sorry for the delayed response. Yes, I had CSF. To be specific I had Spontaneous CSF (Spontaneous means that leak occurs for no apparent medical reason. There is a great Wikipedia article on it.
**

In my case, I was diagnosed after I my my family Dr. grew tired of my complaining of headaches over the course of one Fall. The "LuckyPeter" name comes because my GP sent me for a MRI where they imaged a brain bleed because I had lost so much cerebrospinal fluid... To be more specific I have spontaneous intercranial hypotension brought about by my CSF leaks.

Can you tell everyone a little more about your son?

Shameless Plug: When I finally got to Dr. Gray @ Duke I was in terrible shape. She found 26 or so leaks that first time. I've now had 12 procedures in the past almost three years.

Dr. Linda Gray DUKE UMC is the best!
 

I have to agree with you about Dr. Gray. She has my cell number memorized from calling me so often over the past 2 1/2 years. She is patient-focused and results-driven beyond anything I've ever seen or experienced.

How are you now?
 

Hello, I was diagnosed with a csf leak in August and since then we have discovered blood in my brain because of the lack of support for my brain. I would like to know if your treatments with Dr. Gray have been able to seal your leak(s)? If they have been sealed, have you had any new leaks since then? Thank you for your help!!!

I can only say wonderful things about Dr. Linda Gray at Duke. She is wonderful and educated me on my condition and what to expect. She checks on her patients frequently. Duke staff was equally professional and helpful.

spontaneous CSF leak
 

Hello,

I'm looking for a doctor who can treat spontaneous CSF leak in San Francisco - Bay area. A doctor in Japan found spinal fluid leak from her lumber and neck.

She had 1st blood patch and her condition improved a bit, but seems that spinal fluid is still leaking and she would like to continue the treatment in the US.

Does anyone know a good doctor who can treat this in bay area?

Regards

Ken, I am new to the forum and haven't seen
Anymore posts from you. Are you still sealed up?

anyone heard of csf being blocked?
 

I have a different issue but can't find anything close so am posting here. My problem appears to be something in my spine that shows up whit on ct mylogram is lining both sides and has completely blocked fluid from flowing at l3. This basically leads to a higher level of csf causing severe back and head pain. Have you ever heard of the white stuff? Do you know anyone that specializes with csf in the Midwest? I live in Nebraska.