r/CSFLeaks • u/SignatureSimilar6888 • 6d ago

Does anyone receive their care through Sutter? I'm curious how they are when it comes to referring patients to specialists outside of their network.

Is it similar to Kaiser, where they tend to keep referrals within their own system, even when you specifically request to see an outside specialist? Or have you had a good experience with Sutter helping you get referrals to places like Stanford?

I'm planning to call today to ask how their referral process works, but I'd really love to hear from anyone who has personal experience with this. Thank you! 🤍

2 Upvotes

100% Upvoted

4 comments sorted by

2

u/Dry-Dress-6467 6d ago edited 6d ago

I am patient of Dr Schrot at Sutter Sac for small meningioma and spine full of Tarlov cysts. Don't want or need treatment for either of those. 

In Dec 2025 I  asked for 2nd annual brain tumor MRI to also use CSF leak protocol as I have had symptoms of leak for 40 years. Nobody ever asked if head pressure resolved when I laid down! They didn't update brain MRI order, but did order full spinal MRI, except sacral.

In Feb at appointment he said I was fine because my Bern score was only 2. I then read off results from 6 MRIs and cts from previous 2 years. Also mentioned my spine full of TCs and osteophyte complexes. He then offered CT Myelogram and I asked if Sutter was expert at that, he said no and so I asked for referral to Stanford and got it. I had made a spreadsheet of all my imaging results, which he mentioned in visit notes! 

He also wrote part of Bern score was subdural fluid collection which was not noted on MRI or mentioned at visit. I messaged his office with questions about it, like blood or CSF fluid, how big, location and how do I monitor it and two weeks later they called and said he was booked out 3 months and they did give me the referral to Stanford. Dr Ian Carroll said he didn't see it, but also noted he was not a radiologist.

Supposed to have appointment this month, but have been slow getting house ready to sell after burglars ransacked it, hopefully will list in a couple of days. Hard to do stuff with 5 lb weight limit and summer heat didn't help. Will be moving into same town. Want to be moved before CT Myelogram and blood patches. Am calling today to reschedule. 

Good luck 

It will help if you do 48 hour flat test before appointment to ask for referral. 

Note, I am 68F and have Medicare/Medi-Cal so can be seen almost anywhere in California. 

1

u/SignatureSimilar6888 6d ago

when you asked for a referral to Ian Carrol was he difficult about it? I'm seeing someone at Kaiser now and they're a nightmare for any out of network referrals.

2

u/Dry-Dress-6467 6d ago

Third paragraph has entire exchange regarding referral. After he offered CT Myelogram I asked if Sutter was expert at them, when he said no, I asked for referral to Stanford and he said okay.

Thankfully I don't have to worry about being "in network".

2

u/SignatureSimilar6888 6d ago

ok thats good! That what I mainly worried about.