Hi Kari
Over here in the UK I was told by my pain specialist that they are actively trying to reduce the amount of morphine they are prescribing to patients. It is good and bad, good because I think morphine is over prescribed by consultants that don't look deeply enough into a patients illness. I mentioned in a post that I was once on 90mg of MST twice daily which in hindsight was far too higher dose. It got that way because like you said I became tolerant and had to move up a dose. Why I say bad is because before I was diagnosed with MALs a couple of months ago, my pain specialist said the final stage is to put me on a spinal cord stimulator. He really pushed for me to sign up to this. I did my research and talked to people who had it fitted. If I went ahead that would be the end of investigating what was causing the pain and there were certain scans I could not have if I had the stimulator fitted. I was adamant that I wasn't going to give up finding what was causing this horrific pain so declined the stimulator until I had exhausted all avenues. I'm glad I did otherwise I wouldn't have had the angiogram which showed up the MALs. I know the spinal cord stimulator has helped many people especially those with nerve pain. The problem I have over here in the UK is MALs is even less known, it's taken 2 months for me just to get a consultation with a vascular surgeon. I am hazarding a guess that he knows nothing about MALs. I see him in 2 weeks.

I asked Jill the same question if the consultant has looked at the Celiac Plexus. If like me you have pain when you breathe in and out then (and this is my hypothesis) maybe your suffering from the hammer anvil action. The celiac trunk is trapped in between the median acuate ligament and the celiac plexus. The ligament acting as the hammer when you breathe and the plexus acting as the anvil. I am thinking after a long period of time the celiac plexus becomes damaged too causing scaring/scar tissue on the plexus nerve bundle. Amongst the research they believe that if you get relief from a celiac plexus block then you would be a good candidate for surgery to remove the celiac plexus nerve bundle which may offer permanent pain relief. I believe that MALs sufferers get pain from different areas, pain after eating maybe from lack of blood supply because of compression. Pain on breathing as mention before from hammer anvil action. Constant deep pain could be from the stenosis of the artery itself. That's why I say pain relief should be tailored to the stage you are at. I will post about food too and what has helped me to eat again and not lose weight. There is something you could try yourself which may tell you if it is the nerve bundle. Try a tens machine, if you get some pain relief then you may need to talk to your primary about investigating your celiac plexus.

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