Last week I saw my NS for the second time. He has the results of my brain, thoracic, lumbar, and the other spine one, that my brain won’t let me remember. I have 7 mm Chiari herniation, two herniated discs, spinal stenosis, degenerative disc disease. My neurological symptoms list is growing and my head and neck pain are unbearable. From what I’ve read on here and other sites, I should have a CINE MRI to check my spinal fluid. When I asked him about it, he seemed confused or annoyed. When I explained why, he said that the results wouldn’t matter. Wouldn’t matter?
Afterwards he just asked me if I’m having any trouble urinating. I told him that I do have trouble starting it sometimes. He said that he’ll see me again in 6 months and if things get much worse, I should call him. Is that normal?
I have an NL appt in a few weeks. I think I should be rested for POTS, ED syndrome, MS, etc. I want to make sure all of my bases are covered.
I’m getting frustrated. I’ve been handling things pretty well up until now. Most of my symptoms began last November. I know for most of you its been a lot longer. How do you keep going?
Any info would be appreciated! I wish you all a pain-free day!
see someone else.
unfortunately, its “normal” but not right. It sounds like he’s not taking this seriously.
With 7mm Chiari & a growing list of symptoms (unbearable is not right!!) you really need to see someone who is educated about Chiari & related issues.
might also need to see a urologist to be evaluated for tethered cord if you are meeting the criteria (urinary problems, especially trouble starting, is a big red flag).
I agree with mominmd, find another NS who specializes in Chiari. You are right to be tested for eds, pots because when you do get the right NS who “gets it” you will have all the more information to make the right choices about how to treat your case. BTW, for me a diagnosis of EDS before my surgery would have beneficial because I am know having to find a another surgeon to help me with my unstable neck post decompression. If I had known before my surgery I may have had it done all at once.
It frustrates me so to hear doctors wanting their patients to continue with severe symptoms until they become worse, and worse, and worse and then still have a reason to not take action. I think that for so many people, myself included, earlier intervention would have lessened the residual/ lingering symptoms post decompression. Keep going Kmed, it sounds like you are making all the right moves. You will find the right NS.
Jenn
Thank you two! I will look into other NS’s soon. I had so much momentum going for so long, and now I’m just tired. Doctors are so frustrating and expensive. Luckily I have good insurance, but the co-pays, fees for tests, and medication costs are adding up. I finally had to give up acupuncture so I could afford all of the additional doctors. It’s an endless cycle. I’ll get through it. Thank God for this site, my husband and my support network! Thanks again!