I just got some test result back from my newest xrays and mri's. On the xray results it has listed Spinal Bifida instead of CM, but the mri's say CM. Are they the same (from what I read it sounds like it) or is it possible there is something else going on? Has anyone else run into this?
I know I will find out more when I meet with the NS on the 14th of October, but right now I'm incredibly confused.
I have Spina Bifida Occulta. I am sure yours is also Occulta or you would have already known about it.
By any chance did you have a parent in Vietnam contaminated by Agent Orange? I ask because Spina Bifida Occulta caused my CM and extreme situation and it s believed to be from 2nd generation Agent Orange Contamination. I also have some friends with CM in the same situation. I have CM1 but should be actually CM1.5 from my unusual symptoms and complications.
Talk to your NS about it. Spina Bifida Occulta is common in society. When you have CM it basically means the top of your spine didn't developed correctly. If you never had CM you probably would have gone through life and never knew or had problems with your Spina Bifida at all.
You might want to ask him about any C Spine issues you might also have because of the SBO. I had to have my C Spine rebuilt & would hate for you to go through that also. Please message me any questions you have. I have done in depth research on Spina Bifida & CM. Just do not let things progress too far. You already have a NS and a dx, so you will do much better than I did.
http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277205/
http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277209/
No neither of my parents were in Vietnam but we did live near chemical plants in Niagara Falls. I was wondering if they could list different degrees within each level of CM but was very surprised to see SB in the results. I know my symptoms have been getting worse but I had been doing a lot of heavy lifting as we moved from a 3 bedroom house to a 34' camper. I'm hoping that the NS will tell me I didn't mess the CM up to much; I can't afford not to be able to work for the length of time it takes to recover from the decompression surgery. Also, would having the surgery create more issues with the SBO?
Thanks for links also.
No.....SBO creates more issues with CM and can complicate CM surgery.
My dad was in Vietnam. I had no idea there could be a connection
To add to my confusion, I am having trouble with things making it from my brain to my hands or mouth. I am forgetting what I am saying mid sentence and having trouble typing. Yesterday, I was working on stuff for class and when I was done typing, my right hand had not typed a single letter but my left hand had tried to make up for it but never left the keys on the left side of the keyboard. I was also having a terrible day with being dizzy and had trouble walking around from it. I guess I am glad I have an appointment with the NS tomorrow. Maybe he can shed some light on what is going on.
Well, have been in and out of the discussions but never related what the neuro had to say. The surgery for the Chiari's is elective (elective?) and as for the Spinal Bifida - I don't have it. So I was confused before but have been really confused since. I am not sure what or how you can figure the surgery is elective when they are sitting there with the consents in hand all ready to be signed but okay. I am still trying to work full time but it is getting harder by the day especially with the lifting I do. And the migraines and regular headaches are getting worse. My bf says just get the surgery and we will be okay but now it has to be put off as my daughter has to have surgery on her knee. She feel and dislocated it 3 weeks ago, so she is in a full immobilizer and crutches until January 20. Then I don't know how long after that.
Will it ever get better? I have no answer for this, but boy do I hope so.
Sorry for the update turning to rant. :-(