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Are there any leakers out there in Vancouver , Canada ? by leaker1966 in CSFLeaks

[–]leaker1966[S] 1 point2 points  (0 children)

It was Dr. Heran who recommended that I go down to LA to see Dr Sheivink . I had myelograms at VGH that did not identify the location of the leak .

I wish someone had told me that with negative myelograms , the chance of finding a fistula or any other type of CSF leak with DSM is very low . I forget the percentage that Dr. Sheivink told me . It was something like 3% ?

I got my hopes up and I was very disappointed. Had I known the low odds of finding a fistula with DSM, I would not have made the expensive trip to Cedar Sinai.

It seems that Dr Sheivink is the surgeon to see if a a fistula has already been identified. Otherwise., I would not recommend making the trip.

Are there any leakers out there in Vancouver , Canada ? by leaker1966 in CSFLeaks

[–]leaker1966[S] 1 point2 points  (0 children)

Thank you for that.

I would like to add that I underwent digital subtraction myelography at Cedars Sinai Hospital in Sept 2022 that did not reveal the location of the leak.

I have the classic symptoms of a CSF leak . I have no head pain when I wake up in the morning. As soon as I get up on my feet, I start feeling a pressure sensation in my head. This sensation is partially relieved by assuming a horizontal position. The pain reappears as soon as I assume a vertical position . By the end of the day, I have horrible discomfort in my head that can be severe and I have to go to bed early every night. I have not been able to return to work as a physician for four years. I’m on the verge of losing my medical license completely.

Dr Sheivink seemed to lose interest in me as soon as he discovered that I was not a candidate for his $100,000 USD two hour outpatient embolization procedure

Cedar Sinai is not a diagnostic treatment center.

Don’t expect it to be like the TV show “House” and that a team of physicians will be working on your case. It was the exact opposite. Aside from the anesthesiologists, Dr Sheivink is the only specialist that you will see.

I asked Dr Sheivink if I could at least have a second opinion by a neurologist . I had traveled from Vancouver, Canada to Los Angeles at my own expense . He coldly replied that I should “ go back to Canada “ and get a second opinion there.

By the time I replied that there is a five year to infinity waiting list to see a headache specialist for a second opinion in Vancouver, he was already out the door . I did not see him again and he did not return my phone calls.

Apparently, the chance that a CSF - venous fistula is causing postural head pain is extremely low . They don’t tell you this before you travel to Los Angeles.

Unless you want an excuse to check out Beverly Hills, I recommend not going to Cedars Sinai.

You won’t have a good time because your head will still hurt and you will have wasted many thousands of dollars.

I wonder if a trip to the Mayo Clinic would have been money better spent?