For the past several days I have been experiencing some burning type sensations mainly in the back of my head, down my neck and shoulders. It is also frequently accompanied by sensation of difficulty breathing or short of breath. This comes and goes. I can be fine fore several hours and then get start all over again. I took a klonopin this evening which seen to lessen my symptoms which makes me wonder if some of my symptoms are related to anxiety. I have been really overthinking (worrying) about my Chiari. Just so frustrated with it all. I just want to feel better.
I am not sure if you have had surgery or not, but your syptoms bring back memories for me. I had this also before my surgery and after. The heart rate I still have occasionally and the NS told me that even though our heart rate might not show that it is high it is due to our anxiety. I replied to this and stated "I don't feel anxious". He stated having Chairi our bodies can be anxious without us really realizing it. It is really flustarting and we do want to feel better, but I have found (I'll have my 2nd ann the 27th of Sept) that if I take a deep breath and realize and except having Chairi is an life altering issue and it does change us and our lives. Except the good days with appreciate, but also try to except the bad and just say "Yeah I'm having a bad day". Tomorrow will be a better one. I hope this is helpful to you because I have dealt with this and still deal with it daily and it's a hard issue to understand. Just know that your not alone and this is a journey we are on together. Hoping tomorrow is a good day for you. If it isn't. Take a nap. LOL.....Things will get better.
Thanks, this morning is good so far, however I have only been awake for two hours. It's just weird because my symptoms yesterday seemed to be more, oh how to put this, on the outside of my head. There were spots that if I applied light pressure to, I could create or worsen the symptoms. The whole breathing thing is shay gets me wormed up. I could probably handle the burning discomfort in the back of my head, neck, shoulders better if it wasn't accompanied with the shortness of breath sensation. As far as surgery, I have not had any. In fact, other than MRI reports I have yet to have my chiari symptoms confirmed. I have submitted my request for consultation with Dr Oro in Aurora, CO last week and waiting for them to call.
I had both lumbar and thoracic MRI done three yes ago. I would like a Cine MRI but I am waiting for Dr Oro's office to call with my appointment date and then I will ask what tests they will do during my three days there. If I want a Cine done here I will have to look for a location. My GP didn't even know what it was and the radiology department explained it to him but didn't tell him where the nearest one was. Today was a good day, taking a klonopin at 8 and a lunesta at 10 insured a good night sleekest night which I think benefited me greatly.
10 year old just had decompression surgery. He still gets the sudden hot feeling, feels like he can't breathe and gagging issues. Thought with surgery these would have been eliminated?? Maybe its to early. To I ignore this or what next???
I would talk to his Drs regard this...ask about sleep apnea with the breathing issues....and ask if all related conditions were ruled out....syrinx in cervical, thoracic and lumbar spine, tethered cord, disk issues,ICP,POTS,ehlers-danlos...etc...
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