Hi,

I participate in the Predict HD Study at the University of Iowa every year. This year, they will be adding a spinal tap, and maybe a Pet scan to my menu of fun. Have any of you had experience with either of these tests, especially regarding HD and the Predict Study?

tellie

I think the spinal tap is optional. You don't have to do anything you don't feel comfortable with. It's kind of a newly introduced test (they didn't used to include it) and I know there's a reason why they're doing it (don't know why...you'll have to ask and then weigh any info benefits to them versus if there's any risk to you as to whether or not you want to do this part of the study).

Hi Eve,

Thanks for your response. Are you planning on having the spinal tap?

tellie

I was in a study about, 6 yrs. ago, that, included, 2 spinal taps. Mine, were, easy. My, neurologist, reassured, me, that, she, was, good, at, giving spinals and she, was. She, complimented, me, on, takeing, them, well. Yes, I agree, you, should, inform, them, of, your,, concerns.

My neuro is talking about adding a spinal tap to my next group of tests. I have had very painful experiences with them in the past so I'm not looking forward to them. I think making sure your doctor does these on a regular basis is very important. Also they may or may not tell you that you will get a headache afterwards. I have every time and caffiene helps immensley. A nurse said to sip on diet coke or coffee the next day and the headache was very managable. I have a very high pain tolerence (I also have RSD in my left leg and have had numerous lumbar sympathetic blocks) and the spinal tap is much more painful for me.

Thanks for sharing your (painful) experience, Tenille. I decided to do it -- it will be at the end of July. I love coffee, so I'll be sure to have some around during and after! At the University of Iowa, it will be done by a team that specializes in spinal taps. It really is the same technique that they will be using for gene silencing in the (near) future.

tellie

Here's a link to a short video about the spinal tap:

[www.youtube.com]

Let us know how it goes for you, Tellie

Thanks, Eve!

Tellie

Hi,

I went for my Predict annual exam this week, and they canceled the spinal tap portion. The two people before me both got serious headaches, and it was probably because they had taken ibuprofen. I had taken it, too, and they canceled it for me. (They had told us not to take aspirin, but didn't rule out ibuprofen). In its place, I got to do a PET scan, which was alot more fun! So, for future reference, if you are going to do a spinal tap, don't take ibuprofen OR aspirin, because they could affect the clotting, which would cause a headache.

tellie

Very interesting!