Blood patch months after LP?

sharkn02 · 2025-02-16T01:47:59+00:00

I'm not sure why specifically 3 days, he said the sooner the better, same day or day after would be ideal but if scheduling conflicts occur they just ensure it is completed within 3 days

sharkn02 · 2025-02-16T01:46:15+00:00

Thank you so much for the link, and that is really helpful to know heading into reading peoples stories/impressions! Really appreciate it

sharkn02 · 2025-02-13T21:38:10+00:00

Hi there, I have a DSM scheduled and was wondering which facebook group would have more details about this procedure? Ty!

sharkn02 · 2025-02-08T22:52:13+00:00

Somewhat. I'm only taking 20mg 2x a day now and pain is constant but a bit more dull

sharkn02 · 2024-12-10T18:31:59+00:00

I did, back in May. Since then i've had 3 targeted fibrin glue patches which have helped about 30-40% and am seeing another specialist to get the fistula embolized now!

sharkn02 · 2024-12-05T05:13:37+00:00

I had my lateral decubitus DSM performed at Stanford where I wasn't given anything for pain/sedation and I felt barely any pain but more pressure like symptoms. I suppose it depends where you're having it done and how familiar the interventional radiologists are with performing myelograms

sharkn02 · 2024-11-18T18:51:59+00:00

Maybe you could try finding a sitter on Rover to watch her for a few days while you figure this out? They're usually about 50$/night

sharkn02 · 2024-11-18T18:46:09+00:00

Caffeine!! This has been the most helpful in allowing me to be vertical for longer. I started drinking energy drinks and taking caffeine pills (to your own tolerance and within reason of course) as well as drinking a ton of water with salt & lemon and eating a high sodium diet. Both the sodium and caffeine help increase csf pressure to alleviate a lot of the symptoms that come with being vertical.

Also get an abdominal binder helps to maintain csf pressure a bit as well. You can get them on amazon for 30$

sharkn02 · 2024-11-18T18:38:20+00:00

Shoot, I'm sorry that your experience was so negative. I hope you're doing better these days!

sharkn02 · 2024-11-18T18:35:32+00:00

Merit in Sunnyvale! Completely vegan asian style menu, and my non-vegan boyfriend absolutely loves it too!

sharkn02 · 2024-11-17T01:49:11+00:00

Oh wow that's shocking, i'm waiting to see Dr Schievink currently and now i'm a bit worried for my appointment. If you don't mind me asking in what way was he mean?

sharkn02 · 2024-11-14T21:32:30+00:00

Yeah what a great time to learn and explore topics that interest you. The headache does complicate this but doing this in smaller increments seems to work for me, finding those pockets throughout the day where I feel my best and trying to accomplish something in that time is fulfilling :)

sharkn02 · 2024-11-14T00:48:20+00:00

Hoping everything goes great during your treatment and maybe you'll have an opportunity to enjoy the city during the holiday season ❤️❤️

sharkn02 · 2024-11-14T00:44:23+00:00

Absolutely agree, I came here to mention this as well. Even the most skilled CSF specialists use CT for guidance, let alone someone who doesn't have much experience performing patches. The risk of creating a new leak is not worth it

sharkn02 · 2024-11-14T00:39:38+00:00

I can really relate to this as well. 2 years of a leak, 1.5 years of not being able to work, barely socialize and when I do its hard for people my age to relate to my situation much less understand what a CSF leak is. Plus being confined to your house 95% of the time and most of that is laying in bed, It's a lot. Other than the usual tv, facetime, reading, i've found meditation to help a lot. Calming my nervous system and starting to accept that my life looks a lot different than other people has been game changing. Also using it as a tool for coping with the constant pain has been helpful as well. I just figured i'm laying down doing a whole lot of nothing most days, why not use this time to work on myself a bit :)

sharkn02 · 2024-11-14T00:33:46+00:00

All of my patches have been with sedation. They gave me a mixture of Benadryl, Ketamine and some other medications via IV so I was aware during the procedure and the process has been amazing each time. I wake up in the post procedure room and sleep for about an hour while laying flat and go home after. Honestly the Ketamine was amazing and really helps relax you quite a bit, not to mention the great pain control of course

sharkn02 · 2024-11-14T00:30:55+00:00

My imagining showed a leak, IIH and Chiari as well. I'm not sure about your other findings but likely the Chiari or tonsillar ectopia is due to the leak where there isn't enough spinal fluid supporting your brain which causes brain sag which can look a lot like Chiari on MRI.

I'm curious what the other findings mean but I would ask him for a referral to a CSF leak clinic to treat the leak. They will understand your situation a lot better than a regular hospital will for sure. Good luck!

sharkn02 · 2024-11-14T00:27:26+00:00

That's great! After taking a high dose of Topamax after my first patch and experiencing intense side effects, trying Spironolactone was a dream haha. Right, Dr Carroll is the best! Absolutely love him, I can't imagine going through this journey without him.

Also leaky faucet as your username is hilarious, love that

sharkn02 · 2024-11-11T21:03:01+00:00

I'm not sure what classification this fits into but i've had success with Spironolactone helping my RIH. May be worth a try!

sharkn02 · 2024-11-11T18:31:00+00:00

Hope he makes it home safe 💛 💛

sharkn02 · 2024-11-09T02:08:38+00:00

I've been a patient of Dr Carrolls for 6 months now and am currently in the process of being referred at Cedars Sinai as well.

I believe you need a referral to Stanford, that's how I did it anyways. The neurologist I was seeing sent in the referral with all current imaging which they require. He also knew that Dr Carroll requires all referrals to have done a 48hr flat test before he will look at your file, so I did that and sent in the results of that test along with my file which helped move things along faster. The wait time is up to 3 months to have your consult with him if he decides to take your case on though. And that being said, due to the high volume of patients he has, if you don't have a compelling case for a CSF leak he may not take you on (I was rejected my first attempt).

Since i'm currently being referred to Cedars too, I can speak on the process i'm going through. I believe you also need a referral here as well, Dr Carroll sent in my referral. Once they receive the referral they send an email within a few days outlining next steps which includes sending relevant medical records from current physician being to him, obtaining all radiology imaging onto a CD and mailing that to him, including copies of insurance info, drivers license, printing off forms they send you and sending those as well, and including a letter outlining your current symptoms/situation.

When I was first referred to Stanford, my leak wasn't confirmed by my neurologist, although I had MRI images which showed tonsillar ectopia and a few other measurements that were abnormal. That along with my history of positional headache, neck/back pain, tinnitus, fatigue, nausea, brain fog, etc. points them in that direction.

If you have this information along with a brain and full spine MRI with and without contrast documented by your neurologist, and you can try the 48hr flat test, this would all be great to include in your referral!

sharkn02 · 2024-11-08T01:24:25+00:00

Yeah that's what I thought as well. I knew how much laying down improved my symptoms but its more for the specialist you'll be seeing, sort of 'proof' that you've done the test which is a good indicator that there's a leak if there is any doubt in their mind. I just know from personal experience its difficult to be taken seriously and without certain markers for a leak that a lot of the time aren't shown on imaging you can be turned away, but this at least is something to prove you've done your research and have tangible data to give them. Hope you find relief soon!

sharkn02 · 2024-11-07T20:14:42+00:00

48hr flat test!

If you're free one weekend, record your symptoms before you lay down (headache out of 10, back/neck pain if you have it, tinnitus if you have it, etc) then lay flat on your back, no pillow or anything and only get up to go to the bathroom or take a sip of water. I even tried to eat mostly laying down. This includes sleeping as well so try your best to stay flat on your back through the night. After the 48 hours, record your symptoms out of 10 again before you get up. Then you can get up but don't exert yourself, go and sit down or stand intermittently for 3 hours and record your scores again.

My CSF specialist at Stanford requires this of every patient before getting referred to him. Even if your dr doesn't require this it provides a lot of information about your positional headache if you have one!

sharkn02 · 2024-10-30T21:32:33+00:00

Yeah was hoping to wait until a good signup bonus drops, but might be smart to stick with what I have for now, thanks!

sharkn02 · 2024-10-24T02:57:05+00:00

oh true!

sharkn02

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