Chiari NS on the east coast

[lt1228]

Hello everyone...I haven't been on here in awhile. Long story short, I was diagnosed in 2012 with Chiari, decompressed a few weeks later and then had an ACDF in July of last year. I had 2 lumbar epidural spinal injections 2 and 1/2 weeks ago and my symptoms have come back full force. Extreme dizziness, headaches, and numbness/tingling/burning in my arms and legs. I feel the way I did before my Chiari surgery. I had all of these symptoms from time to time after each surgery but like I said, it's constant now. Can't work, drive, clean, etc...

I'm waiting on an MRI approval so my NS can see what's going on. He said it sounds like it's my brain that's causing the symptoms and that the injections didn't do this. He said he might have to do a revision decompression (but didn't get into it past that)

Note- I'm currently seeing my local NS that did my ACDF. My Chiari surgeon is in PA. I live in VA. I got the injections done at a pain management center.

My question is - any suggestions for a GREAT Chiari surgeon on the east coast? I just need this figured out once and for all. Someone who will be thorough and get to the bottom of this. Willing to travel - I live in Southern Virginia

Also any thought, suggestions, advice is appreciated! :)

[lt1228]

Thank you so much Selma!

[selmaS]

  Lying flat helps if you do have a CSF leak to seal....getting up tends to create horrible pressure headaches along with nausea and vomiting....if it was a leak you would not want to be up long enuff to use the restroom....I had a CSF leak and the Drs had my lay down even to eat....it was bad! Mine did resolve after 5 days of laying flat .....not all resolve this way and may require the blood patch.

That said it is possible for the leak to be a slow one and those do not always affect us the same way....

I am not aware that Dr H was ever at TCI.

No, Dr B left in Sept and opened his own location close by...do look at our list of Drs for more info.

[lt1228]

Hi Selma and thanks for the response. I'm definitely better lying down. I do okay for a few seconds when I stand up but get dizzy pretty fast and if I'm up too long or try to pick up the house for 20 minutes or so im literally walking into walls and can't feel my legs. Then I have to go to sleep for a few hours. The doctors keep saying it has nothing to do with the shots...but I don't agree...is it just the biggest coincidence in the world?? I think not!

Lying flat for a few days...what does that do? And do you mean just get up when necessary?

Thanks for the NS names - I know you're not endorsing any of them, I just appreciate a starting point.

Dr Henderson in MD - was he once at TCI? And isn't Dr. Bolognese at TCI?

[selmaS]

  Hi and welcome back to the Forum !!

  Are your symptoms positional? Are you worse when upright? If so, the LP could have created a CSF leak and you may need a blood patch.

Keep hydrated and lay flat for a few days to see if it resolves on it's own...and see what the Dr thinks is gong on.....

Not a suggestion but there is Dr Heiss in MD, Dr Henderson in MD, and TCI in NY as well as Dr Bolognese in NY....there are a few others for youto look into...but those are the ones I remember off the top of my head...do look at our list of Drs for names to research as we do not refer or endorse Drs...just offer names of Drs that have treated members to help you start the research process...