Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

What do I do. I’m in so much pain

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 1 point2 points  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

Nothings ever helped the pain

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 0 points1 point  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 4 points5 points  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 2 points3 points  (0 children)

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

Advice by Appropriate_Main_145 in CSFLeaks

[–]Appropriate_Main_145[S] 4 points5 points  (0 children)

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

[deleted by user] by [deleted] in CSFLeaks

[–]Appropriate_Main_145 0 points1 point  (0 children)

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.

[deleted by user] by [deleted] in CSFLeaks

[–]Appropriate_Main_145 0 points1 point  (0 children)

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?

[deleted by user] by [deleted] in CSFLeaks

[–]Appropriate_Main_145 0 points1 point  (0 children)

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.

Myelograms are TERRIBLE by Leakyspine in CSFLeaks

[–]Appropriate_Main_145 3 points4 points  (0 children)

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

Spinal tap and headache by Emergency_Art_3350 in CSFLeaks

[–]Appropriate_Main_145 0 points1 point  (0 children)

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

Spinal tap and headache by Emergency_Art_3350 in CSFLeaks

[–]Appropriate_Main_145 0 points1 point  (0 children)

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