I haven’t been on here for a long time, but I really need help, thoughts, advice. You hear so often in the Chiari world to listen to your body-mine keeps telling me don’t do surgery this isn’t Chiari, yet it’s the only thing doctors tell me is going on and I’ve been tested for so many things. I’m only at 4.3mm w/ restricted CSF flow. I should be so thankful I have a neurosurgeon that listens and acknowledges it’s not the size of herniation and is willing to do the surgery, so why does my body keep telling me that’s not it-is that just fear? Intuition?
I had my first bone only decompression w/c1 laminectomy 2 1/2 years ago with no resolve. In fact I was worse off after surgery as far as constant drunk/dizzy (hard to explain weird feeling) and still had all symptoms. Before surgery I could confidently drive hours from home and after surgery I have to have someone to drive me anywhere. I cannot grocery shop or go places freely like before surgery. I don’t know what happened or why, I just feel too weak and out of it. Maybe it’s the natural progression of things, idk. My flare ups seem to be progressing quite a bit. On a regular day, I still have symptoms-sometimes quite pronounced sometimes not as severe and I have learned to roll with my symptoms and adapt to my environment. When my symptoms flare though, they are getting worse, I feel like it could lead to something bad and it could be a permanent lights out for me.
My symptoms are-
1-Very dizzy/drunk feeling all the time, varying degrees
2-Full body internal vibrations like a low voltage electrical current, at times it feels so strong like I’m about to start outwardly shaking
3-Body weakness with leg buckling during flare ups
4-During flare ups when I am weak it’s like my diaphragm doesn’t want to work, it is very slow and I have to think about breathing to get a slow inhale, like a fish out of water if that makes sense. I felt that immediately after surgery in the hospital, like when you are given way too much narcotics which is what I thought it was at first.
I’ll also get this tight chest and feeling oxygen not exchanging properly after things like laughing too much and then I feel very out of it too the point that ppl will ask me, are you ok, where are you right now because I get so spaced out.
5-Glitchy brain, like short circuiting, rapid fire blackouts and light headed
6-I’ve started choking over the last several months. During my last flare up my husband pointed out I chocked every night that week on dinner
7-During flares, my voice becomes weak and raspy
8-Sometimes pressure in head with painful eyes, blurry vision
9-When weak my body feels very numb/tingly and everything feels so full and tight all over body
10-Painful weak legs
11-Right side of mouth goes numb
I don’t know what is happening to me. I don’t feel confident that my doctors know what is happening to me. Does this sound like only Chiari to you? It’s the only answer I have and my neurosurgeon suggests a duraplasty. He believes I will have success at symptom resolve but no guarantees and to put it off as long as possible and try to manage symptoms. I haven’t seen him for a couple of years now. My medical team says there is nothing else they can do for me and it’s time to go back to neurosurgery and I know surgery will be suggested. Why do I keep having doubts and telling myself it has to be something else? My husband keeps telling me if the first surgery made you worse, what makes you think a second surgery won’t end up badly. His negative spin I know is making me guarded, but he is right. Should I keep looking for more answers, does this sound like a mild Chiari can cause such severe symptoms?
My neurosurgeon is not on Chiari Specialist list, yet I am in one of the best hospitals in the country. He is so knowledgeable in Chiari and comorbids and he listens to me and wants to help me when I am ready. He treats Chiari patients from all over the country and some from other countries so I am very lucky to have him on my team. So why am I having such a hard time having faith that this is the right and only diagnosis? Also, I am terrfied I will not wake up from surgery or I will stroke out or something else. I am scared I will be worse off again and if my symptoms are from Chiari, I am not even letting myself have a chance at getting better because I am too scared to proceed. I have been fortunate to pull out of my flares so far, but one of these days I feel like I won’t be so lucky and I don’t know where to go from here. Why do I keep telling myself this is not the issue? Is that just normal?
Sorry for the very long post, I just needed to write my concerns and fears-and if I get any good vibes back, then wonderful!