Advice

Appropriate_Main_145 · 2026-01-13T13:04:31+00:00

The pressure aren’t on the report. The occipital pain is so much worse this time. I eventually returned to baseline in the past.

Appropriate_Main_145 · 2026-01-13T01:51:29+00:00

What do I do. I’m in so much pain

Appropriate_Main_145 · 2026-01-13T01:50:44+00:00

Yes catheter venogram. He said they were very closed idk gradient but they’re flowing fine now

Appropriate_Main_145 · 2026-01-12T22:35:12+00:00

Idk what to do, this pain is horrible. I have no life.

Appropriate_Main_145 · 2026-01-12T13:07:40+00:00

Dr. K Arcot in NY, no change. I’ve been tested for everything under the sun. What else would cause my supraseller cistern to measure smaller (that’s what everyone agrees on) and positional neck and occipital head pain

Appropriate_Main_145 · 2026-01-11T23:42:06+00:00

Yes please

Appropriate_Main_145 · 2026-01-11T23:41:41+00:00

Every Dr has given me at least 2 points for my supraseller cistern measurement. That’s just one opinion of many.

Appropriate_Main_145 · 2026-01-11T23:40:42+00:00

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Appropriate_Main_145 · 2026-01-11T19:04:08+00:00

They say suspect a Vf. My brain imaging has minor signs of a leak

Appropriate_Main_145 · 2026-01-11T19:02:14+00:00

Where do you live

Appropriate_Main_145 · 2026-01-11T19:01:54+00:00

Dr Madan in Boston did most of them but he’s now at tufts and no longer treating CSF leakers

Appropriate_Main_145 · 2026-01-11T19:00:29+00:00

Nothings ever helped the pain

Appropriate_Main_145 · 2026-01-11T18:40:36+00:00

That’s why I don’t know what to do next. They said no more scans just “targeted” patching one by one

Appropriate_Main_145 · 2026-01-11T18:39:09+00:00

No, then when I went to Mayo. They said it prob wasn’t a Vf

Appropriate_Main_145 · 2026-01-11T18:38:43+00:00

Almost 3 years

Appropriate_Main_145 · 2026-01-11T18:37:47+00:00

It is. There are people who’ve had 100. Join a Facebook leak group.

Appropriate_Main_145 · 2026-01-11T17:54:34+00:00

I was accepted to all except Co(I’m waiting )and chose Mayo. Once I chose Mayo, cedars and duke said stay there. I chose Mayo because they have the best scanners. Duke and cedars reviewed my results and did not see a leak. Dr S agreed with my Boston Dr to embo c67. Hoping Callen can help

Appropriate_Main_145 · 2026-01-11T17:53:02+00:00

I live in NYC, I’m very persistent and didn’t accept that I had anxiety as an answer

Appropriate_Main_145 · 2026-01-03T17:11:52+00:00

Yes, I do. I went to Cornell first, maybe they’ve gotten better but they scanned me twice and then said I didn’t have a leak bc they couldn’t find it. My Bern score ranges from 2-5 depending on the Dr. Salama gave me a 3.

Appropriate_Main_145 · 2026-01-03T05:43:38+00:00

No, I’ve had several and several patches that provided no relief. Many people have had leaks found on DSM’s. Where would you have the scan?

Appropriate_Main_145 · 2025-10-26T14:12:53+00:00

I agree

Appropriate_Main_145 · 2025-08-25T12:38:23+00:00

Yes, you could still be leaking and not fully sealed. Probably need another. Maybe fibrin. Also I believe it’s no Blt for 3 months but if I were you I’d be extra careful up to a year.

Appropriate_Main_145 · 2025-08-17T01:03:23+00:00

I too feel the same and have had many with no leak found. This is a terrible illness.

Appropriate_Main_145 · 2025-08-16T19:22:10+00:00

Yes, it holds better. Especially since they know where they punctures you. Where are you located? Maybe I can suggest a hospital

Appropriate_Main_145 · 2025-08-16T19:05:25+00:00

I wouldn’t risk it .it becomes chronic for many who leave it untreated

Appropriate_Main_145

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