So I went to my neuro this week to get an official opinion on the benign hemangioma in my neck. Now, remember, my severe and chronic neck and back pain led me to a brain AVM. We found the hemangioma in 2007, but a 2nd and 3rd and 4th opinion said I didn't, and now my last 2 opinions have confirmed it is 7cm and in my cervical spine. My cervical spine is tender to the touch, I have chronic severe pain, burning, tingling, burning and numbness in my arm and fingertips. Yet they are trying to tell m e that the pain is muscular and cannot be coming from the hemangioma or my brain avm. Oh - did I mention severe migraine too? I am so MAD. It is not muscular, especially if it has been going on for 15-20 years now. They cannot operate, so I guess it's "kick it to the curb". Now they want me to go for my follow-up brain mri and another angiogram and focus on the aVM. They referred me to a pain management clinic and I am waiting on their call for an appointment. I just want someone to believe me already. This is not muscular. My spine is tender to the touch and there are places on it where a person cannot even massage it because it sends pain signals everywhere. :/ Sorry, just needed to vent.
Venting here is fine Zilly. Not having medical people listen to you is a pain............
I empathize with you, Zilly. Living with chronic pain is MISERABLE & unfortunately is also invisible.
Is a 5th opinion an option? Or possibly even finding a compassionate neuro who won't dismiss your pain?
Secondary to a thalamic bleed (deep brain, near brainstem) & resection in 2010, I developed what's known as central pain syndrome, which causes a constant burning, tingling & numbness on affected side. http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm & http://www.youtube.com/watch?v=JD26ZAYh9Ck.
I hope you find answers, compassionate care & most of all, pain relief.