18mths since decompression and living a nightmare.
Posted , 2 users are following.
Hi all, well to say my decompression went well would be a lie. For all you that amhave followed my previous posts my operation for my CM1 took a turn for the worse and I actually ended up in a wheel chair, still with all the same problems headache, weekness in hands and arms (as well as left side leg now) my life has change no way shape or form apart from I'm now not able to walk. I was always told that they left the syrinx in place as they were going to see what happened with it.
I daily get a feeling/noise in my head/flowing down the middle of my neck the sound of what I can only explain of a bubbling to fizzy feeling like when you open a can of pop and u head the fizzy and popping imagine that in the back of you head but u literally feel it flow down you neck to the point it turns ur stomach it's really sickening... Now, for the past 3 days I've been crippled in pain... all along the bottom of my spine and shoots up the centre... the pain is something I've never felt before and is horrendous. Non of my normal meds are suppressing the pain. I can't drive as every bump hurts I feel like if I was to sneeze my back would split. Now my question is, I'm aware that the syrinx can lead to back problems if it expands but could this also be linked with the CM1?? I no every Ines case is different I get that just well intrigued to see if anyone else has/had the same symptoms? I look forward to your replies xx
0 likes, 3 replies
helen11122 Kel230213
Posted
So sorry to hear your so poorly Kel. It took me nearly 12 months to get back on my feet after decompression, but didn't have the same problems you have.. I couldn't walk unaided for sometime and was sick most mornings.. It's 3yrs now and still take medication for nausea and dizziness.. Some days are better than others... It's surprising the different symptoms everyone has with chiari.. I got told nothing more can be done surgical wise and self management really... I hope you get plenty feed back on here xx
Kel230213 helen11122
Posted
Thank you for your reply Helen...... I still pinch myself as the looks I get when I tell ppl about the CM1 makes me sound like I'm talking out my rear end. It's doesn't help I have such an ignorant family with regards to my illness. In there eyes I had the opp I'm cured. They don't understand, and BELIVE me I've given them leaflet and web page print out everyone I've found. But still there quite blind to it. Don't no if it's a case of if they act this way it doesn't hurt them seeing me the way I am but hey ho... nothing as weird as folk. The amount of ppl I've spoke to who's symptoms are nothing compared to myself is quite breath taking.... I guess it just shows we really are all truly unique. I'm back at the surgeons on the 5th/9 and I need some answers because despite all this happening to me I have gone back to work still try my best at home, although most household chores and personal care has to be taken care off by my eldest and husband. My dignity has gone right out the window. But threw my husband and my 2 gorgeous girls is where I find my strength. Don't get me wrong 5:7days I cry when alone as I have to act like the Iron Lady I've always been. But the days are harder and harder. Glad to hear your on the mend now I like to hear of real successful stories. Take care Hun xx
helen11122 Kel230213
Posted
I know exactly what you mean Kelly.. Because I look OK on the outside they think I'm fine, and I hate to hear myself moaning all the time, it gets you down, I work part time now, but I can't do early mornings till I pull myself together.. I think we are the only ones who have this condition that can understand what you are going through.. Xx