I think the first procedure I had on my AVM was in 1983. The doctor told me it would never be completely fixed.
After a day of recovery I went to the radiation department for coils to be put in my AVM. The whole process was horrible.
I was awake and it was very painful. The first doctor was right I needed another procedure.
It seemed to me the procedures got worse not better. All of the early procedures were done through radiology and I was awake.
There was a screen so I could have watched. Someone along the way asked if I wanted to watch. I never watched and never wanted to watch.
That was one of the few time I was glad I had glasses.
The pain continued to get worse.
I ended up waiting 13 years before having the net procedure in Ohio.
Yesterday I saw my vascular surgeon. While waiting we figured out I have been seeing her since 2006.
She has done at least one procedures a year on my very large AVM. This AVM started in my hip area and now effects my knee.
I get some relief but within a year the pain is back.
My breast specialist referred to the AVM has a stomach thing. I have heart failure and Pulmonary Hypertension all due to the AVM.
Lots of doctors have said just take it out everything will be better. The AVM is way to large to take out.
Two times I have had procedures and ended up back in the hospital due to complication from the procedure.
Last year I had a procedure to block some vessels in the front part of the leg. I went in the hospital a day early, had the procedure.
Within twenty fours I was back in the hospital with PH, heart failure and liver issues.
The doctor was very nice, blunt and to the point. I really appreciate doctors like that. She said I had been through a lot. Went on to describe everything used in my AVM.
Just like she said in the past it started to grow in other places. She said the AVM is way to big and she doesn’t want to kill me.
We talked about everything I had been through. She said if I had a major change she would attempt. Pain test but nothing that’s new.
I showed her my art . Starting that is new. She was very encouraging about my art.
My next step is pain management. I am not sure what pain management is.
I plan on checking into pain management next week.