Acute central sensitization attack

Posted by erikaleigh @erikaleigh, 1 day ago

I was dx with central sensitization about 4 years after a 2011 brain tumor apoplexy with chronic csf leak. I was bedridden the first year, but things improved greatly after 2014 csf leak repair surgery. I still suffer from TBI, chronic head pain and odd dysautonomia issues like unable to sweat, extreme startle reflex, fatigue, noise sensitivity, the list goes on :-).
This year I was dx with breast cancer and had partial mastectomy with bilateral reconstruction in October. About 2 weeks after my surgery I had what I can only describe as an acute cs attack. I had sensations of the surgery, being cut, pulled, pinched, pushed in my right breast. It was extremely crazy. In the past, I had acute attacks of cs from my brain tumor apoplexy but I didn’t understand that pain, it was just crazy extreme pain. These breast cs attacks are two pronged, pain and sensation. Sometimes I would only have the sensation of being push, pulled clamped etc, sometimes the sensation had the pain component. I have deduced, though no scientific proof, that my nervous system was actually reliving the surgery. The pain of these attacks are more than acute pain, it has a distinct type of pain, crazy, out of control incoherent pain. With these new breast pain attacks, as soon as the attack had calmed down about 3-5 hours later, I researched what this crazy breast pain could be, it reminded me of a particular brain attack I get every couple months. In my research I found that your nervous system can actually relive things that happened while under anesthesia. This has shaken me to my core, though the bright side is that the attacks do signal my nerves knitting together so they are healing, the attacks might be my nervous system coming back online and running the last thing it experienced which was the severing of nerves during surgery.
I am posting this for others who may of experienced this. I also was hoping to get recommendations for a cs center, my husband just retired so we can literally go anywhere for treatment, anywhere in the world really, is there a world renowned pain management center specifically for central sensitization patients?
Hope this made sense,thanks,
Erika

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Please sign in or register to post a reply.