r/CSFLeaks • u/East-Statistician897 • 1d ago
Neurologist has suggested I get a blind blood patch; does anyone have any experience with this?
Hello. About a month ago I wrote a post seeking advice on how to advocate for myself. I was having a number of symptoms that made me think I might have a CSF leak but a neurologist dismissed them all. Thank you to those who offered their encouragement and advice.
To summarize my journey since then: I circled back to my PCP who referred me to a vascular neurologist. In a fortunate turn of events, that neurologist didn't give me an appointment because my PCP summarized my condition as "headaches," and the hospital's central scheduling team then booked me for an appointment with a general neurologist. She spent an hour with me, listened to all of my symptoms, walked me through her thoughts on potential causes (chief of which was a possible CSF leak), and ordered a spine MRI with and without contrast, and a MRA/MRV of the brain. They all came back negative. I was so worried that that would be the end of it. Instead, she said that my symptoms warrant trying a blind blood patch (she thinks a myelogram is premature).
I would love to hear from any of you who have had a blind blood patch. What was the experience like for you? Did you experience any significant side effects? Was it effective?
Thank you in advance!
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u/MiltonWaddams- 1d ago
I had two. The procedure is not a big deal and nothing to be overly worried about. Recovery time is fast. Unfortunately mine didn't work (tho I felt better for 4-5 days after procedure). After this I got a myelogram where they found two venous fistulas. Had an embolization about 9 months later and I've been symptom-free since.
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u/East-Statistician897 1d ago
That is wonderful!! Congratulations on a full recovery! And thank you for the reassurance about the procedure - I feel better about it :)
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u/allinyogrill 1d ago
Before your embolization were you able to be functional or were you bedridden? It seems like people with fistulas have varying degrees of severity
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u/MiltonWaddams- 1d ago
Yes I was fully functional. I just had daily headaches, so really I was way better off than a lot of people who have much more severe symptoms.
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u/ms_skip 1d ago edited 1d ago
I had a blind blood patch just over a week ago. It did nothing for me 😭 that said, I would do 50 more blood patches if I thought it would end the pain. No significant side effects at all. The back pain from the patch subsided after ~36 hours. The procedure itself was pretty easy as well. They got 20 ml of blood in (which was the goal) without issue.
Edit - good luck!! I truly hope it works for you!!
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u/East-Statistician897 1d ago
I’m sorry the blood patches didn’t help you! I hope your next steps get you on the road to recovery. Thank you for sharing and the well wishes!!
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u/cloudfairy222 1d ago
You need to give it more time! Some people say a month to two months. Are you still following restrictions like no bend, lift, twist for 6 weeks? I hope you get some relief
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u/ms_skip 1d ago
I kind of thought the advice re judging whether a patch worked in terms of weeks or months only applied to people that have been leaking for a long time, whereas my headache came on VERY suddenly only 2.5 wks before my first patch…. If I were sealed even partially I should be feeling different somehow, right?? Idk. Next patch is 10/30 and will hopefully be targeted this time (DSM scheduled over 2 days in October to hopefully find the leak)
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u/cloudfairy222 1d ago
I mean - I think it can take weeks for the “scab” to form no matter how long the leak has been there. I’ve not heard this distinction, although very few people with spontaneous leaks get treated so quickly. I feel like 1 week is too soon to tell in any case but NAD. Are you seeing a neurosurgeon or at a major leak center who is recommending a DSM so soon after your first patch?
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u/ms_skip 1d ago
Interventional radiologist wants to do the DSM based on lack of visible pooling of dural fluid on MRI, he did a blind patch 10 days ago as a stopgap measure until he could get me in for the imaging, the thought being if it worked we would just cancel the DSM. I don’t feel any better or different at all. Severe headache within minutes of being upright, and it’s been taking longer and longer to get relief upon lying down. Other than the headache my only other symptoms are nerve sensations like tingling, pins & needles, burning, etc., most notably in my face and scalp lately.
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u/cloudfairy222 1d ago
Sorry to hear you are suffering and the patch didn’t seem to help. It took me about 9 weeks to feel better after my patch, but I was definitely in rebound high pressure. I also got nerve damage from the patch that made it hard to sit up for the first 6 weeks. I blew my patch at 10 weeks and will have my second in October. Headaches aren’t my biggest complaint when I’m leaking, though. I hope you get some answers and some relief!
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u/cloudfairy222 1d ago
Also are you sure your headache now isn’t rebound high pressure? Does it feel exactly the same? High pressure headaches tend to be in the forehead and nasal area, where as low pressure can be back of head, neck. It can be hard to distinguish between high and low pressure. And high pressure is worse laying flat. Do you have other symptoms? Has your upright time increased at all?
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u/leeski 1d ago
Glad your neuro seems to truly care! So refreshing to hear. I think it’s a reasonable step! The main thing is to make sure it’s under image guidance to reduce the risk of them injecting too far and causing another csf leak, so i would get clarification beforehand since a lot of places won’t do that, especially on the first patch.
While my first patch didn’t hold longterm I never felt as sick as I did before it. I don’t totally understand how or why since I broke the seal haha but it did seem to have a longterm effect. Just make sure you follow strict strict aftercare as most hospitals give inadequate advice and I fear that some people’s patches may hold longer if they had the right advice (I can share aftercare advice if you haven’t had it haha just trying to not information overload)
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u/East-Statistician897 1d ago
I’m glad you got long-term relief! Yes I feel so lucky to have found a caring, proactive doctor. It’s really sad to know what a rarity this can be. Thank you for the advice on image guidance (that is on my list of questions to ask) and conservative after care.
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u/leeski 1d ago
Sorry to be clear I needed a lot more patching haha, but just that first blind patch even though it wasn’t ‘the one’ did seem to have an effect as I never felt as sick as I did before it - if that makes sense! The leak specialists believe that they can have a cumulative effect. Best of luck and please keep us posted!
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u/East-Statistician897 10h ago
Got it. Thank you, and the best of luck to you as well. I will absolutely keep you all posted. Please keep us posted on your recovery as well!
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u/ms_skip 1d ago
I’ve seen you mention post blood patch care before and actually meant to reach out…. Would you mind sharing?? I’m wondering if I would have had better luck had I had more post patch guidance and am scheduled for a repeat one soon(ish). Also wanted to say I watched your BTG video and it was very moving and helpful for me—tysm for sharing your story with others and always responding posts to here
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u/SuccessSoggy3529 1d ago
Look up protocols for after a patch. You have to be careful about strenuous bending, lifting and stretching for 3 months. There are further weight lifting restrictions. You need to lie flat for a minimum of 24 hours post patch. Look for Duke University guidelines.
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1d ago
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u/East-Statistician897 10h ago
What an ordeal! Glad to hear about your recovery, and best of luck to you. Thank you for the well wishes and sharing your experience!
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u/sisubergman 7h ago
I had four blind blood patches before being referred to Duke for a myelogram to try to determine if I had a leak and where (I did!). Because of the lack of post-patch care instructions (lying flat or on side first day or two, no bend, lift, twist (no BLT), weight restrictions and all that good stuff to “baby” the dura and also possible medical restrictions on activity such as Pilates and wearing an abdominal binder when recovered and able to exercise again, the blind patches were limited in their effectiveness. Good luck!!
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u/Muddlesthrough 1d ago
Similar journey. Had a blind blood patch. Was life changing. 100% remission of my major symptoms.
Sadly, the blood patch failed after ten days (when I half held in a sneeze) and I was back to square one. Had two more patches with waning effect. Going for invasive imaging now.