Jump to content

Spinal Taps, Pots, And Eds


ks42
 Share

Recommended Posts

My newest neurologist wants to run spinal taps on my spouse and I (since we both got POTS around the same time) which I think is an excellent idea. There's a lot of valuable information that can be gained from it, especially if an infection or certain type of autoimmune disorder is suspected.

However, the rheumatologist who diagnosed me with EDS told me to be very, very cautious with spinal taps due to the higher risk of spinal fluid leakage and development of chiari with EDS patients. My neurologist doesn't think this is a big concern at all - then again, I'm not sure how many EDS patients he's actually done spinal taps on, though.

I'm going to discuss this with a geneticist who's familiar with EDS before I make my decision. In the meantime, I have two questions for you all:

1) Has anyone had an abnormal spinal tap with POTS, and was it diagnostically helpful?

2) Has anyone with EDS had a spinal tap, and how did it go? Did your doctor(s) take any precautions to prevent spinal fluid leakage, like using a smaller needle, doing an immediate blood patch, etc.?

Link to comment
Share on other sites

I have not yet been officially diagnosed with EDS although my sister has it and I meet the criteria. (Waiting till Im doing a little better to pursue seeing a Geneticists per the recommendation of my sisters Dr.) have had 3 spinal taps since my onset of symptoms 4 years ago. All three came back pretty normal with nothing significant. most important thing I could share is the importance of remaining supine for several hours following the spinal tap. One of them I only stayed supine for an hour and ended up with side effects, the worst of wich was a terribly horrible migraine that lasted a couple days. Good look on the test hope it's helpful.

Link to comment
Share on other sites

I don't have EDS but have had several spinal taps before. Mine came back fine but afterwards I didn't stay on my back long enough, I still took it easy but not enough and got the spinal headache they warn you about. So my Dr had me on bed rest till I could go in for a blood patch. The blood patch worked thankfully but I had to be on bed rest for a few more days after that procedure. Just be careful.

Link to comment
Share on other sites

I have EDS. I was told by 2 EDS experts that I should only have a spinal tap as a last resort as I am more likely to have a leak than the general population due to the EDS. I think you have to decide for yourself what the cost/benefit proposition is. Only you know if your quality of life is suffering enough to make the risk worth it.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...