"Suffering the Slings and Arrows of Outrageous Fortune"

So, Em is struggling with a low pressure headache again. Can’t sit up without excruciating pain, nauseated, her ears feel full, her neck is stiff, the Lumbar Puncture site is sore again. Hopefully, it is just low pressure and not menengitis also. The symptoms has been going on for a couple weeks now and they are not improving on their own. We have been pushing fluids and she is spending a lot of time laying flat. She sneezed a couple times a few days ago and it has gotten worse since then. I don’t know if the leak is in her ear(s) or at the LP site or both, but she is having text book symptoms so it is obvious something is going on. She has no quality of life right now – every few weeks, she ends up flat on her back for days until it heals up. Sadly, no one seems to know what to do to break this cycle or even cares enough to try.

We have tried to wait this out, but I started suspecting another blood patch is needed and, indeed, the doctor wants her to go to the ER to get one. She is, um, less than thrilled about this. The blood patch in January was a horrifically traumatic experience. They used latex gloves, even though she has a severe latex allergy, and she did not ever get numbed sufficiently so the procedure was excruciating. She is not eager to go through that again. And when I say not eager, I mean “you shall not pass”, “over my dead body”, “you’ll have to tie me up and drag me there, ’cause I ain’t going willingly” not eager.

The doctor can’t even see her in the office until July 8th and that is squeezing her in. If they see her at the ER, they will tell us to follow up with the neurologist. When I pointed that out, I was told that she can be seen sooner by one of the other neurologists, so that is maybe a silver lining? And I am hoping that, if I can convince her to go to the ER, since we have already been informed that a blood patch is not an emergency procedure, maybe we can arrange for her Pain Management doc who is an anesthesiologist, to do the procedure. He knows her, knows what she has been through, and hopefully can manage her pain both during and after.

I know we need to document this as an ongoing problem. At some point, one of the scans is going to show SOMETHING a knowledgeable doc is going to recognize as a leak and be able to do SOMETHING about it. We have to do SOMETHING to address this round of low pressure because she has no quality of life right now. We have to keep pushing to get this addressed. Now I just have to convince her to go to the ER again and to trust that it won’t be like it was last time. I have no idea why she would believe me if I promise her that, but that is what I have to do. As a side note, it is times like this that I would love to have every doctor who has treated her badly or hurt her or trivialized her suffering to see what their ignorance has wrought. Anyway…

A while back, I found a video that I meant to share here and just didn’t get around to it. It is a really useful video and it has helped me to gain a little more knowledge and fortitude to keep fighting this particular fight. It is about an hour and a half long but, if you are struggling with these symptoms, know someone who is, or has EDS which makes you more prone to developing these symptoms,  it is well worth the time to watch this video. And, he mentions EDS as one of the frequent causes of CSF leaks so it is great in the respect that it is spreading the word about EDS at least. If I was in California, I would be pounding on this doctor’s door and begging him to help my daughter…

The Mystery Headache: Migraine, Postural Headache, Spinal Fluid Leak

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