Chiari Malformation- Please share your experience

[Markthehatter]

Hi all,

I hope you are as well as you can be.

I recently shared a post on Chiari Malformation and perhaps it was a touch too long.

To keep this one short in the hope that I gather a bit more anedotal experiences, if you have any experience with chiari malformation, whether that be how you managed it with conservative measures of the succcess/failure you went through with surgery, I would be most grateful to hear from you. If you could share any techniques, activities, equipment for sleeping etc that has improved your quality of life, that would be fantastic and much appreciated.

I am 35 years old with a 6 months old baby who I am unable to care for due to long covid onset 18 months ago followed by 7mm chiari diagnosis. I don't consider my life any more important that anyone else's in the slightest or say this in an effort to gain sympathy. I raise that point to share the reason for my urgency and why I am very much considering surgery.

Take care everyone

Mark

 

[lenora]

Mark, I believe that I gave you my experiences with surgeries for both Syringomyelia and Arnold-Chiari Malformation.

I do wish other people with one or both of these conditions would write about their experiences. At the best of times, surgery is difficult on the body. It doesn't guarantee that you'll have more sleep or so many other things. Surgeons try, but it's a difficult thing to decide upon. Good luck. Yours, Lenora

 

[Markthehatter]

Thanks for getting back to me Lenora. Yes I did read your other message, thank you for that.

I wondered if I'd written too much in my previous message so tried a shorter one.

Yes the decision regarding surgery is tricky, especially given that its very difficult to differentiate between CFS/Long covid and chiari. Or indeed if theres any point in thinking in such a binary manner.

Given my current quality of life, I am leaning towards surgery. However, as you suggest, its an absolute mine field choosing your surgeon!

Many thanks and take care

 

[lenora]

Hi Mark......I think the reason you haven't had many responses is that not many people have had Chiari surgery. I don't know what the other site says, but I understand that it's out of favor today. If you find out the truth, please let me know.

I know a few people are having CCI surgery. I don't know if it's another form of Chiari or just what. I would be interested in knowing. It's quite involved (recovery is), one has to wear a collar for a year, I believe and then plenty of PT, I would expect. One of our members figured out on his own that was his problem and arranged for the surgery. I still can't think of his name, but I believe it's Jeff White. He now runs a consulting service for people with the same problem. I don't know how to get in touch with him. Anyone????

The hydrocephalus can be controlled with a shunt that ends in your abdomen. See, years ago, it was just a shunt that extended into the spine (not far enough), and it blocked immediately.

That's all of the information I have at this point. Sorry. Yours, Lenora

 

[Mary]

@Markthehatter - you might find this thread helpful: Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS - it's a quite lengthy thread with a ton of info. You also might try doing a search for chiari using the search feature on the top right-hand side of the page.

Also, here's a posting tip - when you're replying to someone, if you put the "@" sign in front of their user name like I did with you above, or like this: @Mary , the person you're tagging will receive an alert that they've been tagged. Just putting their name in a post won't do anything to notify them.