Hi All,
First time back on forum in an age...update (sorry some of you don't know me- spare you all details)

Still plodding on. Med wise completely dropped the Methadone off as side effects not worth it. Still on Ketamine twice a day which tried tailing off but increased pain so back on. Had some real bad phases when Lyrica increased to 900mg a day..back to 600mg now. Venlafaxine I take 75mg morning and 37.5mg at night. Also take Meptazinol...really ought to be flat out on this but ...
Resp wise still the probs with phrenic nerve paralysis complete on one partial on other and every time I get a hoofing great cold or infection breathing feels like it gets weaker. Still on O2 which definitely helps with the SOB..
Theory now that I have a lesion in c spine...management no different.
They did at one time consider a Spinal Nerve Stimulator but decided to risky..
Unfortunately because I cannot lie flat to sleep - cannot breath due to the elephant sitting aaround chest and throat - I am now getting nerve impingement in thoracic spine leading to hideous scapula /axilla to chest wall pain...Had PT and have exercise program as this is going to be an ongoing issue...Mmmm

Oh such is life an additional thing to throw in the pot...I am definitely a ruin and my body not a temple as it is falling to pieces.

I still have a bad sense of humour and continue to laugh as much as possible despite everything....arms not much good for pulling me out of black hole so this is my coping mechanism.

My very best wishes to everyone and hope that tomorrow is better than today ....

Must catch up on some posts.

Hx

It has been a long time, sorry to hear things are not going well.

Take care