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Old 02-08-2013, 11:23 PM #1
tom1019 tom1019 is offline
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Default Spontaneous CSF Leak - Any good doctor in SF bay area?

A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening and headache came back 2 weeks after the blood patch.

I brought back her contrasted MRI and CT results from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards
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Old 03-13-2013, 06:33 PM #2
JustineJ JustineJ is offline
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Default Dr. Schievink

Quote:
Originally Posted by tom1019 View Post
A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening and headache came back 2 weeks after the blood patch.

I brought back her contrasted MRI and CT results from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards
YES! there is the best and only doctor who treats this surgically in california. his name is dr. wouter schievink at cedars sinai in los angeles california. anyone who has a leak goes to him, he is number 1 no doubt. give him a call at his office (you may have to try a couple times) and you can also send him an email. I am from the new york area and i had a leak from an epidural then had 3 blood patches. one of the blood patches created another hole( although i did not know it at the time). I had surgery with dr. schievink even though no scans showed my leak and he found both leaks and fixed them! I am now 9 months post op and have my life back! if you have any other questions just let me know
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Old 03-14-2013, 01:00 PM #3
tom1019 tom1019 is offline
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Originally Posted by JustineJ View Post
YES! there is the best and only doctor who treats this surgically in california. his name is dr. wouter schievink at cedars sinai in los angeles california. anyone who has a leak goes to him, he is number 1 no doubt. give him a call at his office (you may have to try a couple times) and you can also send him an email. I am from the new york area and i had a leak from an epidural then had 3 blood patches. one of the blood patches created another hole( although i did not know it at the time). I had surgery with dr. schievink even though no scans showed my leak and he found both leaks and fixed them! I am now 9 months post op and have my life back! if you have any other questions just let me know
Thank you for your info!
I recently found doctors locally in San Francisco, CA.
UCSF Precision Spine and Peripheral Nerve Center, Dr. Hess.
We are currently trying to get an appointment.
If it doesn't go anywhere, I will definitely contact him!

Thanks!
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Old 05-15-2013, 07:08 PM #4
Berthabutt Berthabutt is offline
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Quote:
Originally Posted by tom1019 View Post
Thank you for your info!
I recently found doctors locally in San Francisco, CA.
UCSF Precision Spine and Peripheral Nerve Center, Dr. Hess.
We are currently trying to get an appointment.
If it doesn't go anywhere, I will definitely contact him!

Thanks!
I am 1 year post op this month. Dr. Schievink is the best at Cedars Sinai. He is worth going to. His specialty is CSF leaks. Life is worth living now.
Hope, Health, and Happiness,
Berthabutt
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Old 09-22-2013, 10:03 PM #5
Philip Thomas Philip Thomas is offline
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Quote:
Originally Posted by tom1019 View Post
A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening and headache came back 2 weeks after the blood patch.

I brought back her contrasted MRI and CT results from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards
Hello, Tom. I am looking to get treated in Japan this year. Please could I have the details of the doctor you mentioned? Many thanks.
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Old 03-10-2014, 07:00 PM #6
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Default Looking for an expert in NYC.

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Originally Posted by JustineJ View Post
YES! there is the best and only doctor who treats this surgically in california. his name is dr. wouter schievink at cedars sinai in los angeles california. anyone who has a leak goes to him, he is number 1 no doubt. give him a call at his office (you may have to try a couple times) and you can also send him an email. I am from the new york area and i had a leak from an epidural then had 3 blood patches. one of the blood patches created another hole( although i did not know it at the time). I had surgery with dr. schievink even though no scans showed my leak and he found both leaks and fixed them! I am now 9 months post op and have my life back! if you have any other questions just let me know
Hi Justine, I'm writing you because you mentioned that you are also in NY area. Isn't there any expert who can treat cerebrospinal fluid leaks, and performs blood patch in NYC? I know blood patch has a risk of making another leaks like you had, but I'm thinking to try my second blood patch. It's not the best option to fly to LA for me, so I would like to find Dr in NYC. Any information from your experience (like, which hospital is ok/better, or which hospital I shouldn't go) would be appreciated. Also if you don't mind, could you give me a details of the surgery with Dr Schievink? I'm curious, but afraid of aggressive treatment. Thank you very much.
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Old 03-11-2014, 03:29 PM #7
sowoo sowoo is offline
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BERTHABUTT, was your surgery due to a spontaneous leak? I am a relatively new spontaneous leaker (79 days). Had a failed blood patch on 1/4/14 and have been bounced around neuros who don't believe the nueroradiologist in Houston who found the leaks (while I was home for holidays). I have been reading about Dr. Schievink and Dr. Gray, but can't find any spontaneous leakers they have "fixed." Starting to give up hope. Thank you for any guidance. Sara
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Old 03-12-2014, 12:04 PM #8
Berthabutt Berthabutt is offline
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BERTHABUTT, was your surgery due to a spontaneous leak? I am a relatively new spontaneous leaker (79 days). Had a failed blood patch on 1/4/14 and have been bounced around neuros who don't believe the nueroradiologist in Houston who found the leaks (while I was home for holidays). I have been reading about Dr. Schievink and Dr. Gray, but can't find any spontaneous leakers they have "fixed." Starting to give up hope. Thank you for any guidance. Sara
Sara,

Dr. Schievink handles any kinds of CFS leaks. I have had several. They are not sure all have been spontaneous. No one really knows for sure. Don't give up hope. Life can be good again. Send your info and have him see if he can help you. He may not be for everyone but he was for me. I did not have blood patches because he said they probably wouldn't have worked for me and I was from Florida. So I had surgical repairs. The last being in May of 2012.
Hope, health, and Happiness,
Berthabutt
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Old 03-14-2014, 02:49 PM #9
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Thank you...
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Old 10-10-2020, 12:09 AM #10
connieyeye connieyeye is offline
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Quote:
Originally Posted by tom1019 View Post
Thank you for your info!
I recently found doctors locally in San Francisco, CA.
UCSF Precision Spine and Peripheral Nerve Center, Dr. Hess.
We are currently trying to get an appointment.
If it doesn't go anywhere, I will definitely contact him!

Thanks!
Hi, my husband may have a CSF leakage, since he has a severe positional headache and doctors didn't find anything from normal CT & MRI. Did you end up seeing Dr. Hess in UCSF? How was the experience? I really appreciate it if you can tell me more about your experience. We live in bay area.
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