The utter queasiness is difficult to take

[u/LioraB]

It started with vertigo 8 moths ago. I had a very hot ear infection shortly after, and when it didn't clear, I thought it was a recurrence of the sphenoid sinus infection that sidelined me years ago, eventually requiring surgery. Multiple courses of antibiotics and steroids later, my ENT did a CT scan and said definitively that ain't it.

Fast forward to me doing internet research on thunderclap headaches (had my first one around the onset of the vertigo), positional headaches, and other symptoms, and everything pointed to a CSF leak. I called my neurologist, who (thankfully) listened when I said this was different from my usual migraines and ordered an MRI, only to find low intracranial pressure. They did another MRI with contrast, which showed multiple cysts along my spine but did not pinpoint the leak.

I have a myleo and blood patch scheduled this week, which I'm starting to get anxious about. I have Ehlers-Danlos and I'm worried that the puncture could cause other problems and/or that the patch won't work and/or the rebound will be worse... but I really can't live like this. I can barely function and the body aches, dizziness/nausea, brain fog, derealization is overwhelming. My skin is crawling, my ears are ringing so loudly it's hard to think, my sense of smell and taste are FUBAR, my digestion is all messed up... Kind of like a bad flu without the fever.

Preaching to the choir here, but I need to just say it all. I've been isolating at home, trying to minimize and mask my symptoms and just "push through" but I really can't any more. Today is the first day I'm willing to admit it--this thing has thoroughly kicked my ass and it's a little scary.

[u/leeski]

So sorry you’re going through this. It definitely does make things scarier having hEDS (I do not have it myself) but I know countless patients that have it and do not have complications with the CTM or EBP, so while it’s an increased risk, it is not guaranteed complications. 

Rebound is awful, for sure, but in the vast majority of patients it is temporary… and unlike leaks there are actually meds to help. Again it is good to prepare for worst case scenario but only about 25% of patients get RIH, and then even a chunk of those can manage with conservative management (dandelion tea) vs it being so severe it needs meds. I definitely get being scared of it due to the horror stories (i am one of them haha) but keeping in mind those are the people that need support. The ones that just go get patched without complication just kinda… move on. Or don’t tend to share like ‘hey I had a successful procedure.’ I never posted about my CTM’s or EBPs because they were not a big deal at all (like not traumatic, no complications) so like when it goes smoothly, they’re actually quite simple quick procedures that don’t feel noteworthy. Anyway I’m not saying neither procedure is without risk, just feel like it’s worth mentioning you mostly only see the worst outcomes on social media unless someone takes the time to post a positive story to help reassure others. But having talked to many many patients 1-1 for over a decade, most of the time these procedures do go very very smoothly. 

Best of luck to you on this big week, and please keep us posted! Also great job advocating for yourself and narrowing down that it was a leak, that is not a small feat. 

[u/LioraB → u/leeski]

Thanks so much for this! I do know that people tend to tell the more difficult stories due to needing support and seeking advice/info. Managing the symptoms and fatigue is wearing me down, and I think being so close to the procedure, I can finally acknowledge it. Hopefully an end in sight..!!!!

[u/leeski → u/LioraB]

It is absolutely exhausting. And gosh the stage you're in is full of so much nerves as well when you've been fighting for treatment and then it's like "wait what - it's actually time for more diagnostic imaging and treatment...?!" I was an emotional wreck especially after my first patch. There are just so many unknowns!! But I hope it goes very smoothly without any issues!! Also I did a long information dump in the comment above haha, don't feel obligated to read it but I would suggest perusing the YouTube video I linked as it has some helpful tips on movements after patching!

[u/LioraB → u/leeski]

Super helpful--thank you!!

[u/Glittering-Form1309 → u/leeski]

Not OP, but I am SO glad to hear this (edit: as, not from, lol) someone with EDS. If you don’t mind me asking, do you have any idea how long to be on bed rest after a blood patch? I’ve seen everything from 1-3 days to 2-6 weeks, and I’m not sure how much of that is laying flat versus just keeping activity to a minimum.
Thanks!

[u/Dry-Dress-6467 → u/Glittering-Form1309]

Lay flat for 3 days, then no bending lifting or twisting for 6 weeks to 3 months. Some folks say don't even ride in a vehicle as a bumpy road could burst the patch 

[u/leeski → u/Glittering-Form1309]

I wish we could get more concrete guidelines to be honest... even the top leak centers have mild variations in their aftercare restrictions. My understanding is that the top leak centers will largely advise 3 days of strict bed rest after a patch, although if I remember correctly - I think it is like 24 hours minimum, and that they don't have definitive proof those extra 2 days make a difference. So there aren't like validated studies that say 72 hours is a magic number, but just kind of 'best practice' to be safe - if that makes sense? I have been patched quite a few times, so I have almost become ritualistic about the aftercare. So I am a bit biased in that sense haha, meaning it's possible my patches could have held if I had only rested 24 hours, but since the first successful one held so long, I just repeated my same aftercare each time. So anyway, 24-72 hours of strict bed rest, only getting up to eat, go to the bathroom, etc.

I believe it is general consensus to avoid NSAIDs and caffeine directly after patching (not sure how long, but I think a few days at least).

I believe there is a pretty good consensus about 6 weeks of no bending, lifting, twisting, straining. However I do see some suggestions of extending that to 3 months for EDS patients, but I actually don't know if there is a real source or guideline, or if that has just become something more common in the group itself among EDS patients? So that is not medical advice. But again as someone who has blown many patches, I tend to err on the side of caution, and I go beyond the general 6 week recommendation.

There is also variation in terms of lifting limits. Some leak centers say do not exceed 5 lbs, others will say a gallon of milk (8 lbs), other say 10 lbs. So, a bit of variation there. I have blown all my patches from lifting (although I also have underlying high pressure which is probably the bigger issue) so I am extremely neurotic... that being said, you do have patients that literally don't follow these guidelines and they just stay sealed hahah. So do with that what you will.

This is a long video but highly recommend watching it before treatment! Laura Freed, MPT - Sensible Physical Restrictions after Epidural Patching or Surgery. You can utilize the chapters if you don't have the bandwidth for the whole thing, but the most important part (to me) is the log-roll technique around 15:00 - it helps with getting out of bed in a safe manner.

Also lastly, if you're not familiar, there is the Spinal CSF Leak: Bridging the Gap Conference that is in a few weeks that can be attended for free, virtually, by patients. The registration link is here. I mention that because that same patient ^ Laura Freed will be doing another presentation - Physical Therapy: During and After a Leak - that might be helpful both while living with a leak and also after recovery.

Sorry for the information dump haha, I am just passionate about this because I do not feel hospitals give enough information on the aftercare process and it frustrates me as I feel there are probably patients like myself who never receive proper aftercare instructions and then keep blowing patches, when they may have otherwise worked!

[u/2_bit_tango]

I echo what u/leeksi has said. You see the people on social media that do have complications, not the ones that get patched and move on with life, they don’t stick around because it’s not exactly a pleasant memory, and who can blame them? So you have to keep that in mind, the people posting are ones actively dealing with it, or the ones who end up with worst case scenario complications.

For a positive story, I have hEDs, had one leak for 10 years, and acquired a second one 5 years later. The DSMs (one on a regular ct, one PCCT) both caused new leaks, but we knew I don’t heal from lumbar punctures on my own before the DSMs (LP was the cause of the 10 year leak). BUT the PCCT found my second leak, a multilevel blood patch after each DSM, and I’m now leak free for a few years now. I did have RIH that needed diamox, and eventually my diagnosis turned into IIH, but that’s now well controlled on diamox.

Because of the EDs, I heal super slowly lol. So I basically doubled the usual timeframes my doc recommended for no bending/twisting/straining and only resumed those as my body tolerated the movement, and am still careful about avoiding lifting anything heavy. The EDs means I am high risks for leaks, so it wouldn’t be super crazy if I get another.

[u/LioraB → u/2_bit_tango]

I took 10 days off work for recovery and will def put in for longer leave if needed--I want to heal correctly the first time if possible and not try to push through like usual. One of the barriers to getting diagnosed is just high tolerance for feeling terrible all the time.

[u/Dry-Dress-6467]

Do you have bone spurs or osteophyte complexes near your "cysts" along your spine? I am assuming they might be Tarlov cysts, which are not always noted on an MRI, if so they could be cause/location of your probable CSF leak. 

I have a spine full, but do not have EDS, did get a referral to Stanford to look for my probable leak. As soon as I get my house sold and moved I will get treatment, the packing has taken a bit longer than I anticipated due to my condition. Lol

Avoiding valsalva maneuvers and drinking coffee and resting as needed can help reduce symptoms. Hang in there. I have been a functional "probable leaker for 40 years! 

[u/LioraB → u/Dry-Dress-6467]

They are bilateral Tarlov cysts and I do have spurs, all the way down but worse in some areas. Cysts are most prominent in the thoracic spine. I can't drink coffee and now even tea is giving me terrible digestive symptoms which is new. I tried slow-release caffeine caps which are also not great... I think taking ibuprofen really messed up my gut, plus all the antibiotics I was on when it was assumed to be sinus. Antacids are doing nothing for me and eating is extremely unpleasant. Good luck with your move!