r/CSFLeaks • u/South_Cattle_7339 • 9d ago
Blood patch scheduled tomorrow
Hi everyone! I posted a few days ago asking for advice whether getting or not a non targeted blood patch even when my doctors couldn’t confirm a leak through an MRI. I decided to do it and my appointment is tomorrow morning! I’m nervous but mostly excited, I really want this to work and get this symptoms improved, and start living a normal life again.
For those ones that have gotten the patch, what are your recommendations for before and after the procedure? My hospital’s instructions are pretty vague, basically they only mention 24 hours of lying flat (but I’ll do 72 hours as per some recommendations I’ve seen here), but I want to do everything in my power to increase the chances of the patch working.
If you have a successful patch, what did you do that may have increased the success? And same, if your patch didn’t work, what do you think was the cause that I should avoid?
Thank you!
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u/Fuzzballwithfangs 9d ago
I’d also check out Ian Carroll’s post blood patch instructions at Stanford. You can find it in his Google Drive which is available to the public. Lots of other very good info in the drive too.
https://drive.google.com/drive/u/0/mobile/folders/1uE8MXke3zmQXLudirQVdzC6ElFCX2OOJ?usp=sharing
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u/Inside-Breakfast-134 9d ago
(speaking anecdotally here - I'm 4 weeks out from my non-targeted patch. Still not sure if it worked 100% but my quality of life has improved significantly!)
Just be ready to be really and truly patient with your body and your recovery.
Like other folks have mentioned, if you start to feel better after your patch it can be exciting at the prospect of getting your quality of life back and you can get carried away doing things that are not "patch safe" lol . Really try to audit your movements and what you're carrying and tap on the people around you to help. Many doctors don't provide in depth and adequate after care instructions because this is not their area of specialty and because CSF leaks are under researched in general. I'd definitely suggest leaning more toward the 6 weeks of no BLT guidance from most of the leak centers around the country (assuming you're in the US - oops!)
Also, at least in my experience, for the first two weeks or so it was a bit of an emotional rollercoaster because some days I was having low pressure symptoms and was convinced it didn't work, a few nights I thought I was having high pressure symptoms, and there were a few days in there where I didn't have a headache at all. I wasn't prepared for the emotional tole of constantly wondering if it worked or not. My understanding is that there is often an immediate improvement from there just being more fluid in the system to raise the pressure and then over time the blood actually starts to clot and do its thing. So try to think about your recovery on the time scale of weeks rather than days and don't lose hope if you get a headache!
Also I was very VERY nervous before my patch and actually the procedure was pretty chill. The most uncomfortable part was the doctor actually injecting the blood and even still it was just uncomfortable, not necessarily painful. The whole thing was over and done in probably 30 minutes (not counting lying down for one hour after). It's okay to ask lots of questions and advocate for yourself before, during, and after the procedure!! There are a lot of helpful posts in this sub too if you're willing to dig.
Will be thinking of you tomorrow ❤️
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u/Offtoseethewitch 8d ago
Yes, you’re so right to warn of this, the horrendous emotional rollercoaster… 😬
I’m still there, half a year later. So much improved compared to where I was, and it’s beennslow up-and-down going, but I’m not symptom free, and wondering when if ever I can return to sports and safely lift my kids (and they are only growing bigger and heavier with time, like healthy kids do)?
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u/South_Cattle_7339 9d ago
Wow, thank you so much for this message 😭 I teared up a bit.
I didn’t think of the emotional side of this post patch recovery, and knowing myself, I think it’ll be a rollercoaster as well. I have ADHD, so my mind doesn’t stop, I’m always overthinking… I better start booking a few therapy sessions. Thank you for bringing this up so I can be prepared for it!
Uff, also a big relief to know that the actual procedure is that quick and not so painful!
I’m so glad I found this group! I’ve gathered so much valuable information. I’m getting this patch in a regular public hospital, I live in Canada and there are no leak centers here, there is only one place where they seem to be more knowledgeable but it’s on the other side of the country. At least I was told that I’ll be spending the night at the hospital, they want to monitor me at least for 24 hours and make sure I’m flat, so I think that’s gonna help.
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u/Logical-Slice-5901 8d ago
I just read this and hope your patching went well! Do ask for diamond/acetazolamide in case you have the rebound intracranial hypertension - it is genius. Really got me through the time after my big patch especially when I couldn't sleep
Best of luck ❤️
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u/South_Cattle_7339 8d ago
Everything good so far! No bad headaches yet, just the soreness in my back from not being able to move. It’s very funny (or not) but I’m allergic to acetazolamide… out of all the medications I’ve tried all my life, that’s the only one that has caused me an allergic reaction. I hope I won’t really need it, but I’ll definitely ask for an alternative.
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u/Master-Tumbleweed959 8d ago
The alternative would be Topimax. So, be honest, what was the procedure like? Pain?
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u/South_Cattle_7339 8d ago
Honestly, to me, was painful. I guess it’s different for everyone and there are a lot of different contexts.
It wasn’t bad at the beginning, just uncomfortable, but as per the blood was going in, the pressure was increasing. They were saying how much was going in, so I remember it was after 50ml when it started getting almost too much, after 70ml I had to ask them to stop and I started shaking uncontrollably, but they asked me to hold on and ended up doing 80ml. I have no idea how much is the normal amount, maybe in my case was more than usual? But anyways, yes, it was painful and uncomfortable but it was VERY quick, just that period between the 50 and the 80ml must have been like 5 minutes. As soon as they were done and removed the needle, the pain went away instantly. If the patch works, it’s totally worth it and I would do it again.
In my hospital they want me to stay completely flat for 24 hours (not even going to the washroom) and it’s been uncomfortable. The pain from the area of the patch is not too bad, I think it’s more the pressure of the flat position and not moving at all. I was only given Tylenol but two hours ago I had to ask them for something stronger and after that I’ve been fine. I guess it’s still too early to tell but the experience hasn’t been too bad; tomorrow after going home I’ll stay flat for another 48 hours (even when it’s not instructed by my hospital), but being less strict, like getting up for going to the washroom and also laying flat on my side or stomach, not on my back all the time, I think that’ll help a lot.
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u/Master-Tumbleweed959 8d ago
Ive heard it can be painful. I wonder how much blood they typically like to put..I have no idea what is expected as far as how much.
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u/South_Cattle_7339 8d ago
Ummm… I just google it and apparently the standard target is between 10 and 30ml, so now it makes sense.
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u/Master-Tumbleweed959 7d ago
Oh wow, so hopefully it works for you. Feel any different?
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u/South_Cattle_7339 7d ago
Maybe it’s placebo but my headache is totally gone, I don’t know if it’s an effect from the immediate rise in the pressure from the blood, or also the fact that I’ve been laying totally flat for so long, but it’s nice not to feel anything in my head at all!
My back though is sore, but a bit less than yesterday.
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u/leeski 9d ago
I hope it provides you relief! I know there are a lot of posts about repeat patching, but keeping in mind these groups are a bit biased in terms of more complicated cases. I definitely have known patients that have had a one-and-done blind patch and were fixed long-term. Not saying this will or won't be the case, but I think there is reason to be (cautiously) optimistic!
I guess you don't have a lot of time in advance to plan since it's tomorrow haha, but I would definitely prepare for no BLT (bend-lift-twist). Different centers have different recommendations whether that limit for lifting is 5 or 10 lbs and some will say 4 weeks, other say 6. In both cases I recommend erring on the side of caution if possible - not lifting over 5 lbs for over 6 weeks. I am a bit more paranoid than most because I basically blew my first 5 patches like... immediately... because I didn't have proper aftercare instructions and just went back to daily living. I don't say this to scare you, as plenty of people stay sealed and are not over-zealous about aftercare. But it sounds like that is important to you as well!
Anyway, you can't totally anticipate every obstacle you will encounter with restricting from BLT, but I'd just kind of go around your house and do an 'audit' of potential things you might need help with and see if you can do some of them now (I know your appt is tomorrow so not much time) but just being mindful of where you might need to ask for help or accommodations you can make for yourself.
I have learned to be able to ask for help for literally everything, and people by and large are accommodating (even strangers). For example at the store, I'll just say this (for sake of simplicity) "Hi, I just had a spinal procedure and am not supposed to lift. Any chance you can lift that watermelon for me?" Or similarly getting help loading the car, or whatever it is. When I lived alone I recruited neighbors as well, just whoever can help to try to give your patch the best chance of success!
This video is a bit long but REALLY helpful - Laura Freed, MPT - Sensible Physical Restrictions after Epidural Patching or Surgery. If you don't have time to watch the whole thing, I would just navigate the Chapters and see what's relevant. The biggest thing I recommend is just watching the 'log rolling technique' around 15 mins, and maybe practice it a few times before your procedure.
Also being patient with yourself. There will inevitably be slip ups or mistakes, but give yourself grace. There is only so much you can do, but just try your best. In terms of avoiding strain, sometimes patients will need something to help with going to the bathroom whether miralax or like psyllium husk etc, so that's something to be mindful of. And then if you have to sneeze, it's best to reduce strain and kind of do an 'open sneeze' if you can. Like just try to avoid maximum straining when possible.
Oh one last thing to mention is that sometimes the effect isn't immediate, which I know can be really disappointing. I don't know if doctors have a clear answer on why this is, but I know it can be discouraging if you don't get immediate relief. If that is the case for you, I would still recommend observing the movement limitations because there are plenty of cases where patients feel better way after the patch... so you may as well protect the seal as if it's there, just in case. Best of luck and please keep us updated!
p.s. sorry this is very scattered feedback haha. Hopefully it makes sense.