Why does a blood patch fail? (2023)

2nd Blood Patch Complete but confused on possible side effect?

I had a blood patch done after getting a spinal headache from getting a pain pump installed. After about 2 days my blood patch failed and I just had another done yesterday morning. So far no symptoms of spinal headache coming back so that’s good. Dr is having me wear a binder to prevent blood patch from failing again but on here I’ve read I’m not supposed to wear one after a blood patch? Also, I’m having random pressure pounding sensations that originate from my lower back where the blood patch and pain pump was done. The pressure/throbbing/pounding comes on at random times even while I’m laying perfectly still in bed. It radiates up my spine and into my head where I can literally hear the pounding and my hearing becomes muffled. It doesn’t hurt like the spinal headache did it’s just very sudden and intense. Doctor is also confused on why I’m experiencing this symptom. I can’t find anything online describing what I’m experiencing. The pounding does get better with the binder on but does not become nonexistent either. Anyone else experience this? Thoughts?

Needing Advice

Hello! This is my first post. Three months ago I suddenly got the worst headache of my life and severe neck pain. After a month I was finally diagnosed with a spontaneous CSF leak. A MRI of my brain clearly showed that my brain was sagging. A spinal tap confirmed the low pressure of spinal fluid.A mylogram and multiple MRIs failed to locate the site of the leak. I had a 3rd blood patch a week and a half ago which really helped. The first few days I felt pretty good. However, I think I still may be leaking. When I wake up in the morning I feel good and sometimes I'm headache free. As the day wears on I feel worse. I really pushed myself yesterday and I feel like I'm paying for it today. Caffeine does seem to help, but too much seems to make me so restless.The doctor feels like I may be healed. I do feel much better. He says the headaches may be due to the fact that my brain is irritated and there may be inflammation. Could this be possible?I have learned a lot by reading through the posts and it's encouraging to know that I'm not alone. Before my leak I was an active teacher. I loved to run and workout. I'm on short term disability now. I know I could not be up and active with my 3rd graders.My current neurologist has been very caring and helpful. He's the one who suspected a CSF leak after being misdiagnosed by another neurologist. He is knowledgeable but not an expert on CSF leaks. My case frustrates him, and he's told me he's never had a case like mine. The pain management doctor who performed all 3 blood patches is not so kind and seems to know so little about spontaneous CSF leaks. He made me cry when he asked me why in the world am I getting a 3rd blood patch when the first two didn't work.Is there any advice anyone can give me? I watched a video about CSF leaks with a doctor from Duke who says a CSF leak can be due to bone spurs. When I had a a MRI about 5 years ago because of my neck pain the doctor said I had bone spurs and osteoarthritis in my neck. So maybe the problem is in my neck, but maybe not. In the months before my leak I was really working my upper back really hard with weights. Sometimes the area between my shoulders would hurt.The 3rd blood patch was done in the thoracic region. The doctor went higher on the 3rd patch, but he said he couldn't go too far up. This was the most effective of the 3 patches.Along with much needed advice I have a few questions.Is there a neurologist or pain management doctor in the Dallas Texas area who is extremely knowledgeable about spontaneous CSF leaks?Is there anything I can tell my current neurologist that can help. He is open to ideas, I know he has saught the advice of other doctors.Would any of the specialist on leaks be willing to look at the my mylogram images or other MRI images to see if maybe they see something. I'm not completely opposed to going to California, but I've already spent so much money and this would be a financial strain. Do the experts ever consult with other doctors?This post is much longer than I planned. There are so many times when I feel so utterly hopeless. I pray for healing and am so grateful that I found this site.

Specialists in South Africa who administer blood patches and symptoms query

Hi - does anyone know of anaesthesiologists/radiologists/neurosurgeons who routinely perform blood patches for spinal CSF leaks in South Africa? Preferably, Cape Town, but I'd be prepared to travel further if I cannot find an expert in this field close to home. So far the doctors I have dealt with are all against blood patching, but that's probably because most say they have only done one or two and the risks associated with a blood patch are cause for concern. However, at Cedars-Sinai and Duke in the States, the opinions I have received are to have a blood patch as the first course of action to seal a leak that has not healed by itself and perhaps repeated blood patches if necessary, but if a few fail, then surgery would be an option.My second question is how long does it take for the pool of CSF visible on an MRI in the location of the leak takes to be reabsorbed into the body? I'm asking this together with the question as to how one knows when your symptoms are rebound symptoms from a healed leak, which is causing intracranial hypertension and no longer intracranial hypotension, as the headaches for both can be similar, although usually intracranial hypotension symptoms subside by lying down, whereas intracranial hypertension symptoms worsen when lying flat and improve when lying at a 30 degree angle or when upright, but that may not always be the case either, and initially when a leak has healed, the symptoms of rebound headaches can be similar in experience to the leak headaches. That is why I also asked about how long it takes for the fluid to be reabsorbed into the body to determine whether the fluid pooled in the location is remnants of a healed leak or whether the fluid is there because one is still leaking?

Possible Cause for Failed Blood Patches

I discovered something that may explain why repeated blood patches fail in some people. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4909550/In cases where someone has a congenital defect called a Spinal CSF Venous Fistula, "the CSF does not leak through a dural defect but drains from the subarachnoid space into the venous system due to a fistulous communication. ...Not infrequently, despite extensive investigations, a dural defect is not identified in patients with CSH (craniospinal hypovolemia). Many of these patients undergo repeated single or multilevel blood patches with limited benefit."In another article, http://www.ajnr.org/content/ajnr/37/7/1379.full.pdf"Spontaneous intracranial hypotension is thought to result from leakage of CSF from the spinal thecal sac, but in approximately half of cases, no leak is seen on myelography. Cases with no myelographic evidence of CSF leak can be very challenging, and the inability to determine the site of the leak may preclude effective treatment. Recently, it has been recognized that direct fistulas between CSF and paraspinal veins can be a cause of SIH with negative findings on myelography""Although the number of cases reported is low, at least anecdotally, an epidural blood patch may not be effective, presumably not adequately compressing or disrupting the fistula. Surgical exploration and disconnection of the fistula is curative"I love that word, 'curative'.If you have had repeated failed blood patches, you may wish to ask your doctor about this. I hope this helps some of you.

New here, looking to learn

Hello,I just found this group. I am the founder of Cauda Equina Foundation and the Inspire page for Cauda Equina Syndrome (CES). Because of the severe pain that CES causes, I broke down and got a spinal cord stimulator. During the trial before they implant the permanent, they tore a hole in the dura inserting the leads of the spinal cord stimulator into the epidural space from L2 up to T10/11. The doctor admitted me to overnight observation and strict bed rest with caffeine and an abdominal binder, but the post-op nurse screwed up and sent me home instead. My doctor was very confused and pissed off when he called to check on me later that day and I had been sent home. He called me at home and told me to not get out of bed not even to pee (I cath at home because of the CES, so peeing in bed is easier than it sounds), he also told me that if I got worse ext to call him and he will direct admit me. So that's what happened, I got worse overnight and he direct admitted me, he did a blood patch, it worked at first. Then I swallowed wrong drinking water and it made me cough which blew out the blood patch, so back to the hospital, and then I ended up in critical care. I was hypotensive and tachycardia with nausea and vomiting, and having severe pain everywhere from the procedure in my back, the CSF leak, and my CES. So, neurosurgery was consulted and they said that they could do a fibrin patch but they would have to do a partial laminectomy to get to where they needed to put it and because of my previous surgeries they would have to just fuse my spine because my spine would then be too unstable. That was terrifying because once you have a spinal fusion, it weakens the level above and below and eventually you end up needing fusions all up and down your spine. I don't want to be 70 needing a spinal fusion, it was hard enough to recover from a laminectomy at 29, I can't imagine trying to recover from a spinal fusion at 70. So, I asked them if they could try the blood patch one more time. They did. It worked. So, I thought. I think I may have had a CSF leak off and on since. because a few months after all of this I started having migraines for the first time in my life. I eventually got diagnosed with occipital neuralgia (which I think was due to a fall from passing out shortly after the CSF leak "repair"). My migraines are worse when I stand up, and towards the end of the day, I usually wake up fine in the morning (not always but it's a different sort of headache in the morning than the afternoon). This, what I think is a CSF leak, literally feels like pressure in the base of my skull, and I have ringing in my ears all the time. I also have this thing where it sounds like a record scratches or a radio station is changing stations but it hits static screech, but that is all I hear, I literally lose all other hearing, it only lasts about a second. I don't know how else to describe it, and the doctors look at me like I'm nuts. I also had vision changes this last December where my vision started going blurry and then I also get double vision at times. I didn't wear glasses, and now I wear a pretty strong script, bifocals at that because I can't see near or far, and it wasn't like I just got older (I mean I was 36 when this happened), it was one day, pretty good vision, the next month, I can't see crap. I also have sometimes moderately severe pain where the tear in the dura happened in 2018, and the scar there is puckered weird compared to my other scars on my spine from other surgeries. It's indented there and very tight compared to all my other scars. I also get severe neck discomfort, its painful, but is more uncomfortable than painful, I don't know how to describe it, It's like I can't lay still or find a comfortable position, but the pain is not the worst pain ever, it's more that it's intensely uncomfortable to the point where it drives me nuts and I literally get desperate for relief and I cannot use any sort of pillow because I cannot tolerate having my head elevated or my neck bent at all. When I say flat I mean 100% flat, and because of my CES, I have to have my legs up which honestly I think increases my ICP and makes the headache worse, but I can't tolerate my legs flat while laying on my back because of my CES injury. I also sweat so much when I am standing, only when I am standing, I mean like dripping sweat even in the air conditioning, but I'm not hot, and I'm actually cool to the touch too. No one can explain it. Sometimes I get facial flushing (which they think is the adrenal issue and has gotten better and less frequent since the Cortef replacement). I've been worked up for autonomic dysfunction, but the test came back normal, so who knows.I have also had an adrenal crisis several times because my pituitary gland is not producing ACTH. This also started after the CSF leak though I'm not sure if this can be related in any way or not. I am so nauseous all the time! I have lost weight, which is a good thing but it's not happening in a healthy way. I literally take so much medication already because of the CES, now the adrenal failure, and then the migraines. My sleep is so screwed up, I get insomnia so badly. I used to have no trouble sleeping once I fell asleep, now I either can't fall asleep or I cannot stay asleep. I also have perpetually low phosphorus and slightly low salts. I take for "migraines":Meclizine for dizziness and nauseaZofran - nauseaPhenergan- nauseaBenadryl- nausea (off label use)Sumatriptan- Migraines (though I really don't think this helps at all)Excedrin- unclear if this helps, maybe sometimesI have tried Topamax before, it did not help at all, so no longer on thatSarapin shots in the back of my head, this does help the shooting pain and soreness to the touch on the back of my head but no other symptomsI take hydrocortisone (Cortef) to replace my cortisol as I produce almost zero and its a wonder survived a year before getting proper treatment, even going into crisis several times to the point I was in ICU with a blood pressure of 50s/30's and a heart rate in the 40's they said that they couldn't explain why I was having a crisis because my cortisol levels were fine, until they weren't. Literally, they would be 7-12 (low normal) then 0.8-2 during a crisis and no explanation as to what was triggering a crisis, but my ACTH is always low <(5). Now I'm also getting facial pain (not unlike trigeminal neuralgia)I'm having a headache pretty much every day, and they can last hours. Laying down does help, but it's not an instant fix, I have to lay flat for at least an hour sometimes longer. My migraines have been pretty consistent since September of this year, right after we got my adrenal failure under control (I started feeling better so I started getting out of bed more, but now I have more migraine symptoms) BTW adrenal failure literally makes you feel like you are dying because you pretty much are. So I do still feel so much better since I'm not in adrenal failure all day every day, but I feel like I could be better still if not for this stupid head thing. I don't know if this is a CSF leak, but the correlation of it happening after a confirmed CSF leak, and they can't find any other reasons, it makes me wonder. Any input into symptoms of leaks that aren't large enough to put you in the emergency room would be appreciated, as I'm wondering if I'm nuts for thinking it could possibly be a CSF leak, or is it a migraine? I don't know. I'm going to Mayo Clinic on the 18th but I'd like to hear your input so I can advocate for myself. As you can see, I have a very complex case, and I am being followed by Mayo Clinic. However, I am my own best advocate so the more I learn the more I can help my doctors figure this out. It could be all related, or it could be a bunch of different things wrong. My guess is that it could actually be both related and separate, that's another very long explanations, I'll spare you. But I would definitely like to hear more about CSF leaks that are on the smaller side, what symptoms do they cause, how do you diagnose them, how are they treated? What are your experiences and thoughts?Thanks!Amanda

First blood patch failed - what now? (thoracic dural tear, 9 yrs)

Hello everyone,Thank you all for supporting and maintaining this forum! I’m recently diagnosed and it’s amazing to get so much first-hand information and compassionate support!I’ve had my leak for almost 9 years with all the usual symptoms. Unfortunately, I was misdiagnosed multiple times over the years and didn’t get the right diagnosis until late 2020. The myelogram located the leak in the upper thoracic between C7 and T3 (close enough for blood patch apparently). Doctors think mine is Type 1 (dural tear, not a cyst or fistula) and tell me there isn’t a visible bone spur in the area (so I guess that would make it Type 1b based on Dr. Schievink’s slides https://youtu.be/ohidQMj443E?t=499). They say I have large collections of CSF alongside the spinal cord from cervical to lumbar. I just had my first blood patch done last Monday. A few days later I was told that it probably failed. I’m hoping to get some input on this, as I’m trying to figure out if I should try for another patch. Any help would be much appreciated!My doctor injected 25cc of blood in the upper thoracic region. I felt better for about 4 days: pressure in my head went up, the headache switched more to the forehead and eyes (it seemed like rebound hypertension), tinnitus decreased, and brain heaviness at base of skull went down. The headache was stronger lying down and improved somewhat when I got up. Sadly, I was only given generic post-patch instructions. I rested flat for a full 24 hours and for most of the next 2 days (head elevated on a pillow because of the headache lying down), but I did get up a bit on days 2 and 3. I took pretty much only Advil, not knowing that it isn’t recommended. On the 3rd evening I took a gentle shower, and on day 4 I went out for a slow 30-min walk. I avoided bending/twisting/lifting. The 4th evening after the walk (ie. last Friday night) I felt the pressure drop again and the old symptoms came back. First I felt sudden tension and stiffness in the neck and shoulders. The next morning I had numbness in the left arm, face and leg and some confusion/brain fog, all of which weren't there before. Tinnitus and occipital heaviness came back and are actually a couple of points worse than pre-patch. It's been the same since Friday. The forehad headache hasn't come back. The 3 days of improvement gave me hope, but it didn’t seem to last. I spoke with an ER anesthesiologist, who said it sounds like the patch has failed. I’ll keep watching it and take it easy for a few more weeks like others here suggest, but I’m thinking about next moves. I’ve lived with this leak for long enough and want to be as pro-active as I can now that I have an answer.I'm wondering if I should try to get a second patch after this first one seems to have failed. I believe my doctor's protocol is that if the first patch shows no improvement, he doesn't do a second. Not sure yet what he'll say in my case. My doctor has 20+ years experience, but I could also try another clinic if needed. What I hope to figure out is why this patch failed: is it that I wasn't very good with post-op recovery and I should try harder next time (like staying flat in bed for full 3 or more days, no Advil, etc)? or is it that older and larger leaks like mine are just inherently harder to patch? Perhaps it has to do with leak location too. I was told that upper thoracic is a harder place to access. I've been told that older and larger leaks don't respond to patches as well. I believe the explanation was that longer-term leaks pretty much heal in the shape of a hole and the clot is harder to take hold. Does anyone know if this is true or any more details? I hope some members here can comment on this. Any resources on the kind of case I have would really help (studies, YT videos, anything).I’m wondering if large dural tears can be patched permanently or if the patch tends to be a temporary solution. My doctor told me that the chance of improvement is about 30% with any given patch. I saw Lynnea’s videos on YouTube (https://www.youtube.com/channel/UCsz0bNnLdCQ6PzQPIVTQ0mA). She says her patches are always temporary and blow sooner or later, but I’m not sure why or what type of leak she has. Her latest update says that she got referred for neurosurgery. I wonder if that might be the direction for me too (it’s what the first doctor mentioned), or if I should keep trying with the patches.Can anyone recommend personal recovery stories of members with dural tears (type 1), especially ones that lasted multiple years like mine? That would be very helpful to get some perspective. I’ve been reading the personal stories but haven’t come across one like this yet. Many thanks for reading and for your support!

Lumber puncture leak... so many question!

Hello,I’m now into my 6th week post lumbar puncture that has caused a csf leak. The first 2 weeks were very traumatic with horrific head pain, severe hearing issues, confusion vertigo etc and after 3 admissions I eventually had 2 blood patches 5 days apart. I’m now 3 weeks post second blood patch and I have slowly been getting a bit more functional although low pressure symptoms are still very much present so I don’t think the blood patches have worked.I’m 42 female from UK. Usually very active with a busy career as a psychotherapist ( both self employed and nhs). This experience has completely floored me and has been hugely traumatic. My local hospital have now washed their hands of me and so I went to see a private neurosurgeon with some experience of leaks yesterday.He told me my mri showed signs of a leak ( low fluid around brain and slight brain sag) and next steps are a fiesta mri spine and head scan with and without contrast to try and find leak site followed by a fibrin glue patch. I was feeling hopeful yesterday after meeting with him but today I’m really struggling as my low pressure symptoms feel worse and I’m very anxious about the following issues:1) the contrast mri - I’ve been reading about the risks of feeling very ill afterwards. I also know there’s a high probability of not finding the exact puncture site... do you think they would still try fibrin glue patch if they can’t find exact site?2) if I’ve been making improvements in my symptoms does it mean the puncture site is healing on its own or more likely that my body is compensating? I’m so scared of further interventions making me worse. Wondering if I should wait a couple more weeks to see?3) has anybody had experience of fibrin glue patch... if two blood patches at the lp site have already failed is the glue a better option? I’m also terrified of rhp too!My lp wasn’t traumatic and I don’t think I have underlying connective tissue disorder.. any ideas why this could have happened or why blood patches haven’t worked? My mri results seem to suggest a large leak.. how is this even possible from a tiny puncture hole?I’m sorry for offloading and asking so many questions that there’s probably no answers to. I’m just having a bad day symptom wise when I thought I was really improving... I’m terrified I’m never going to get my life back. So many people rely on me and I feel like I’ve lost myself.So grateful for this forum Emma x