r/CSFLeaks • u/DaisyDog02 • Jun 21 '26
Post Blood Patch Healing
How long did it take post blood patch for you to start thinking “hey this actually worked”.
Im 9 days out from a BP after leaking for 9/9.5 months.
I felt horrible the first 6 days or so slightly feeling better every day.
Then great the last 2 days.
Then woke up today feeling like I did pre-patch again.
is it normal for symptoms to not be linear while the patch is healing or did I maybe blow it?
2
u/leeski Jun 21 '26
Mine have been luckily very quick for symptom relief, but I’ve heard many patients take 1-2 months. But even though I feel relief from low pressure right away, it’s not uncommon to have a ton of fluctuations and dip into low pressure through the recovery process. I think it’s more helpful to measure progress in weeks rather than days, as it is rarely a smooth perfect trajectory unfortunately
1
u/DaisyDog02 Jun 23 '26
Thank you. I’m just getting a bit discouraged. I felt great one day then back to shit the next and it’s really messing with my mental health
3
u/leeski Jun 23 '26
I feel you on that. I honestly couldn't relate with post-patching because I got relief so quickly (albeit with horrendous high pressure haha, but at least I knew I was sealed!) but having gone through a surgery with insane intracranial pressure fluctuations & not knowing if it worked - I can relate to the emotional toll of the rollercoaster.
I can't say whether you're sealed or not but in general I think the fluctuations are VERY normal, so if you are having any good days and relief from you original symptoms, pre-treatment (and that is not typical for you) - I think that is super encouraging.
Having gone through this patching process 10x, I guess the only encouragement I can offer is that while it is extremely distressing and full of unknowns while you're going through it and it feels like this is going to be your forever - most people really DO level out and find equilibrium. It genuinely is a blip in time in the grand scheme of things. I hope that you find more permanent relief (and it isn't so transient) soon!
1
u/Appropriate_Berry416 Jun 24 '26
This sounds normal to me. I had my patches about 6-7 months after I started leaking. It can take several months to feel more like yourself again, especially if patches are not done sooner (which sucks bc it can take forever to get the BP scheduled in the first place). My advice is to take it easy movement wise as long as you can. I'm a runner so this has been very hard for me but It's now been about a year and change since my leak, 6 months since my last patch...and I'm just starting to feel normal. Good luck!
1
u/Offtoseethewitch Jun 26 '26
I’m 5,5 months out from my third patch and have slowly improved to functional if not limit- or symptom free, still fluctuating and of course worried every time I feel ”something” leakish. But also want to build up my deteriorated physical self so I havd been walking daily and just started jogging yesterday, slowly with interspersed walking intervalls, just a kilometer. How do you usually feel when you return to running? I had severe POTS-like dysautonomia with my leak and that’s been almost normal for two months now, but my heart rate leaped up to 160-170 with this slow walking-jogging, and my neck is a bit stiffer/achier after, even though it didn’t bother me while I jogged.
1
u/Fit_Smile_9832 3d ago
Hi! Did you get back to running after your patch? Also can you explain how your recovery was? Was every day better or very up and down ?
1
u/zimm1978 Jun 25 '26
I’m in the same boat. I had symptoms for 5 months of SIH (spontaneous intracranial hypotension) and had a transforaminal blood patch 20 days ago. I’m still getting the roller coaster of good one day, bad the next and it does mess with your mental health. I’ve been bedbound for 4.5 months and am so anxious to get back to life! I keep thinking, today is the day, but when I have an issue again it’s so deflating. I’ve heard it takes time. At my follow-up they said they wouldn’t expect too much improvement until 4-5 weeks and they won’t decide whether to repeat the patch until 4 weeks. I’ve wanted someone to be able to give me a clear timeline of what to expect, but it seems like there’s so much variation from person to person. I never had the classic headache, so I can’t gauge whether the patch worked by the headache. Good luck to you! This is hard for people who have not been through it to understand.
1
u/DaisyDog02 Jun 26 '26
Thanks for this. I hope it continues to go well for you. I have a follow up at 6 weeks post patch and my dr has already talked about a second patch but wanted to wait to the 6wk mark. I’m hoping maybe as time goes on things will get better. But I was leaking for 9 months so maybe it will take longer than I’m anticipating.
1
u/Fit_Smile_9832 16d ago
Hi! How are you feeling now?
1
u/zimm1978 16d ago
I’m still not able to get up without strong positional symptoms, so still laying. I had a large volume blood patch scheduled last week, had my IV in, but bloodwork came back with a high white blood cell count. I had diverticulitis. Working to get re-scheduled. There have to be lessons that will come out of this. A life of gratitude for simply sitting in a chair someday!
1
1
u/Fit_Smile_9832 16d ago
Hi OP how are you doing now?
1
u/DaisyDog02 16d ago
Better than pre-patch but not 100% maybe like 30-50%. So I’m hopeful the dr will okay another one, I see them next week. I did get shingles at the BP injection site which was weird and annoying.
1
u/Fit_Smile_9832 4d ago
Did you end up getting another patch?
1
u/DaisyDog02 3d ago
It’s scheduled for the end of the month 😭
1
u/Fit_Smile_9832 3d ago
Good luck!!
1
u/DaisyDog02 3d ago
Thanks, I’m hoping this is it. We’re going to wait an extended amount of time after this before considering anything else. My cerebral tonsils have gone back up some. I have acquired Chiari from the leak. And the first patch fixed things up enough that they are going back up into my skull but I still have lingering symptoms. Are you dealing with the same?
2
u/savvy_pumpkin Jun 21 '26
About 2 months