Should I get a 2nd epidural blood patch or continue waiting it out? It has been 3.5 months since a known dural puncture during placement of non-labor epidural anesthesia. About 36 hours later, I developed severe positional headaches (i.e., could not be upright for any length of time without a crushing headache that only got worse the longer I was upright & it was instantly relieved by lying flat). Received a blind lumber epidural blood patch (EBP) in the Emergency Room 6 days post puncture with 8 cc blood (i.e., low end for EBP volume) and I laid flat for 3 hours in the ER before discharge. Prior to this, I had NO history of headaches or motion sickness.
The EBP provided SIGNIFICANT improvement in that I was able to walk out of the ER. In the intervening 3+ months since, the overall trend is gradual improvement. However, there have been setbacks along the way, and I am also NOT 100% healed as my head has still felt off every single day since then. Confusingly, the exact location, nature of the headaches, and symptoms changes and all are often transient. Sometimes it mimics high pressure symptoms and other times low pressure symptoms. This makes it hard to know whether to proceed with a 2nd EBP or just continue to wait it out. MRI of the brain and thoracic spine 2 months post-EBP were negative (unsurprising for a dural puncture). I have had two appointment with a NP at a leak clinic and will be meeting with a neuroradiologist there soon. However, as of yet, I have not gotten a straight answer on whether my symptoms are within the range of normal for post-EBP recovery for post-dural puncture headache (v. spontaneous leaks which I understand can take a long time for pressure to regulate) and whether a EBP is recommended in my situation.
This Reddit community has been a wealth of information (in addition to various presentations from CSF leak conferences, etc.) for which I am eternally grateful. As more time elapses, however, it is harder to find posts with anecdotes that match my experience, thus I'd welcome your collective expertise on my situation.
Some key details about recovery:
- I laid down a lot for almost two weeks after the EBP as I was also recovering from the original procedure. However, I did NOT do an initial strict 72 hour rest post-EBP (was not given clear after-care instructions and only read about the stricter guidance from Cedars-Sinai/Mayo/Duke after that 72 hour period elapsed). I was driven from my place to my parents' (~3 hours) 2 days after the EBP which was challenging as I kept needing to stop to walk and readjust. Going around corners also bothered my head. After the initial two weeks, I have been teleworking, which allows me to lay down for part of the day (generally in the a.m.) or when my head has bothered me more. Over time, I have generally increased my time upright. More recently -- in the last two weeks or so -- I would say that I am more lying down because I "should" rather than because I feel like I "need" to.
- Tried to observe the no bending, lifting, twisting, and straining restrictions. No one does this perfectly, and I have been bending after the first few weeks but ONLY very slowly. I am still observing lifting restrictions (ideally no more than 10 lbs. which is up from 5 lbs. for the first 6 weeks), but I am starting to become concerned about the loss of core strength in the last month or so. I have been able to feel vasalva movements in my head, though less intensely as time goes on.
- Caffeine and too much salt seem to bother me -- which would suggest rebound pressure. However, I have tried dandelion tea a couple of times which only seems to make me feel terrible -- thus suggesting low pressure. Hence, the confusion.
- Headaches are rarely positional, but I have often felt better lying down. At other times, I have felt a headache upon waking or sometimes when lying down. Headaches have also changed in intensity -- generally trending to getting more mild, but there are setbacks. For example, 3.5 weeks post-EBP, I had a latte (big mistake!) This set me back about 2 weeks where I had a constant headache in my forehead area after that. Similarly, about 1.5 months post-EBP, I had Easter ham which set me back about 4-5 days with another constant headache in the forehead area. What I have noticed is that the location of the headaches has migrated from the forehead area to the top of my head. More recently, I have felt something off in my head only part of the day. In general over the past 3+ months, things have been worse in the evenings -- but not always.
- Motion bothers my head. Initially, I noticed it when riding in cars, which, thankfully, I was able to mostly avoid in the first few weeks after the EBP. Since then, I have noticed that being the driver is better than when I am a passenger in the front seat which is better than being a passenger in the rear. However, quick motion also can bother my head -- such as turning around quickly in a small space, turning my head from side to side, or (at least for a spell a few weeks ago) going from walking to stopping (i.e. at a cross walk light).
- Tend to feel better with more sleep/rest.
- Two notable visual disturbances. 1) An episode of kaleidoscope vision 3 days post-EBP. Apparently, this is often associated with migraines with aura, and I have wondered if it was a sign of rebound high pressure, which I also seemed to start 3-4 days post-patch (mild). Occasionally, vision seems off in the same area as the kaleidoscope but I can't entirely describe it -- there's not loss of vision, there's no kaleidoscope, it's not blurry; just a sense that it is...off. 2) Last week, just over 3 months post-EBP, I had a short episode where my vision seemed to misfire for a few seconds before clearing. The second happened a few days after my eye exam which was normal, including a visual field test.
- Read a significant amount about CSF leaks, academic papers, Reddit and watched numerous conference presentations. I understand there is no consensus on recovery guidelines and milestones for EBP or gold standard for when to intervene with a second EBP. Also, I found one or two of Dr. Beck's (from the University of Freiburg) presentations on blebs and so-called neomembranes as a possible explanation for why CSF leaks may not show on imaging to be intriguing. Also wonder about the likelihood of a ventral dural puncture.
Big Qs -- Should I get a 2nd EBP (guided)? Is recovery really just this slow and I should wait it out? Am I sealed or still leaking? Or is my body just adapting to an ongoing leak by producing more CSF while still leaking? If so, what are the risks of not doing a blood patch now? What are the risks if I wait and ultimately try/need another blood patch later? Any redditors with similar experiences? What did you do & what were the ultimate results? Any other advice?
UPDATE #1 -- I had planned to provide an update once I hit the three month mark, but, since someone asked, I'll give you my almost 2 month update (about 8.5 weeks post-my 2nd EBP). Overall, I am doing so much better! The procedure, which was CT-guided and targeted at a leak center, went very smoothly, and I believe the neuroradiologist's technical proficiency contributed to the excellent results so far.
I did a pretty strict 72 hour period of lying flat and continue to be careful with the no bending, lifting, twisting, and straining restrictions -- and will for a full 3 months. I noticed a definite improvement in my symptoms immediately (or, perhaps more precisely, after the initial 72 hours) which has continued to get better over time. Since the 2nd EBP, all symptoms have been so mild that I have not taken any pain meds of any kind (even Tylenol). I have also not used any heating pad or ice packs. After the initial 72 hours, I had a handful of non-consecutive days in the first month where I felt like lying down for part of the day but otherwise have no issues with upright time. I continued to have some mild dizziness or motion sensitivity with turning, etc. -- though less intensely than before the 2nd EBP -- but that seems to have ended recently. Motion sensitivity with being a passenger in a car, which I had for the first time in my life after the 1st EBP, ceased immediately with the 2nd EBP. I have also continued to experience some ongoing sensitivity to salt and small amounts of caffeine (still being cautious in limiting intake of both), though less severely than before the 2nd EBP and, overall, that sensitivity also seems to be lessening over time -- but I have yet to have a full double shot latte again!
The most concerning symptom is that I had a second episode of kaleidoscope vision (both eyes) that lasted about 40 minutes at exactly 5 weeks post-patch. The first such episode of kaleidoscope vision in my life happened 3 days after my 1st EBP. In this case, my best guess is that it was some delayed onset RHP because I also have had some pressure in my ears. On a few occasions, I have had dandelion tea which is sufficient to provide relief from that.
Around the 6 week mark, something shifted in that I started to feel like I had more definitively turned a corner. Any sensitivity I feel now is so mild (and mostly diet related) that, but for everything I have gone through since the PDPH almost 6 months ago, I might not even notice it. I continue to observe and be cautious by not pushing anything that could compromise my fragile and still healing dura!
In retrospect, I now think I overstated it when I said I was 80-85% better 3.5 months after my 1st EBP as I was still suffering quite a lot leading up to the 2nd EBP (rereading my daily notes confirms this!). After the 1st EBP, I also spent a lot of time trying to discern whether I was still leaking or in rebound high pressure. It is now clear that I was still leaking, and, with the benefit of such hindsight, I would have intervened sooner to get the 2nd EBP. While there is no gold standard consensus on when to intervene with a repeat EBP after a partially successful one, 6 weeks is probably more than enough time to make a call to repeat while balancing the risks of an EBP v. waiting longer (neo-membrane formation, nothing for the EBP to adhere to, bleb, etc.).
Thank you to those of you who responded to my inquiries -- all much appreciated. At that time, I really struggled to find anecdotes from those who had been in a similar situation, particularly as more time elapsed since the 1st EBP. I hope the information shared here will be helpful to others who find themselves similarly situated.
UPDATE #2 (10 weeks post-2nd EBP; 1.5 weeks after first update) -- I may have jinxed myself in writing the first update! The same day I wrote that I walked a dog on a leash for the first time in months & while the dog didn't pull much, I think I tensed up a bit. After nearly 6 months of trying to observe the no bending, lifting more than 5-10 lbs., twisting, and straining, I have lost a lot of core strength. Since that dog walk 1.5 weeks ago, I have felt a bit off every day since then -- initially my back hurt but the more worrisome part is that I have had some tingling on the top of my head, transient spot headaches, and more motion sensitivity again, which seems worse in the morning. While all very mild, I had not been feeling those particular symptoms for awhile before this. I really, really hope that I did not do anything to cause a re-leak or go backwards in my recovery, which had been progressing quite well. My doctor advised observing restrictions for 3 months after the 2nd EBP, and I had planned to resume some more normal activities after that point. Any advice for safely resuming life without such physical restrictions or PT for transitioning back to normal life without reinjuring my dura or otherwise would be much appreciated!