Pain Clinic update

[sadiemae]

As many of you know, my husband has SEVERE back pain. It had gotten to the point where his"quality of life" was nonexistent. In Febr he had a Lumbar epidural, and it took the edge off his pain. We had another one in March, and we saw a definite improvement. In April we tried trigger point injections, and his pain returned almost worse than before. We went in again today, and we are going to get another epidural on Friday. These are steroid injections, and usually they do not like to do more than 4 a yr, but the Doc asked Les if he felt his ALS was progressing rapidly, and he said yes, so the Doc said "What is important for you is quality of life, so if they offer relief you can have more than that." We were not even supposed to see this Doc today, only the PT, but he came in to talk to us. They gave us another option that they can do also. A Lumbar Radiofrequency Neurotomy, also called radiofrequency rhizotomy. Basically this is a slight electric current used to cut the nerves serving the painful facet joints. What is so wonderful is that they are willing toTRY to cure his pain, keep trying different things, and not just throw narcotics at us. He is currently on 60mg of Morphine, plus oxycodone for breakthrough pain. We also had a home visit today from our VA nurse, and she suggested Neurontin, which I know has a bad rap form a few(lot of) people, but we are going to try it as is doesn't interfere with his breathing. Les has been so depressed lately because of the pain issues, so this brightened our day today. I feel so blessed to have found a Dr who understands this disease and the pain that can come with us. He is coming in on his day off Friday to do the epidural. Good docs are out there, you just have to keep looking, and not take NO for an answer. HUGS Lori

 

[brooksea]

That is wonderful! Hope all goes well!

 

[JeffP]

sadiemae i hope all works out for you guys that back pain isnt a joke in hope your husband gets relief from what the doctors have to offer you guys take care

 

[Al]

I guess at this stage of the game, I'd be willing to give it a try too. Drugs can be killers too. Some help but can make other problems.

AL.

 

[sadiemae]

Our goal, and the pain clinics goal is to get him off the narcotics. Especially the morphine. It doesn't really help the pain anyway. HUGS Lori

 

[Blubear]

Hummm, well if he does the rizeotomy (sic) it will fix the acute pain that makes life so miserable. Will he be pain free? I doubt it hun. BUT, if they get the right nerves he will be able to go way down on his pain meds. I know how those dang things dont work after a while for acute pain, ya just keep going up and up on the doses till you are a zombie. See, if it does work, which I am living proof that that procedure does in fact work if done right, then it is all about pain management. Ya ween off the narcotics really slow, or he will be sick, no time for that...if he then gets to the point where he is just on a minimal amount of pain meds, then taking like 1 percocet will really help for breakthrough. But, what chronic pain people need to realize is that there will be pain every single day. You just have to get really good at asking yourself if the pain of the day really warrants that extra breakthrough med. I really really hope and pray that it works for him hun! It took me 17 doctors to find my doctor and he changed my life, literally. Talk to ya tomorrow!
Hugs, Kari

 

[Robert Redmond]

My brother was having severe back pain as well. We would have to constantly turn him to keep him off his back. If we sat him too high
his back would kill him, too low and he couldn't breathe. This late last year and early this year. He was diagnosed VERY late in his disease
and we couldn't get help to buy the things he needed with no exact diagnosis of his condition.
Now he has a bed that he can adjust so I know that helps tremendously but he is still in so much pain. His wife said the doctor is coming out
today to set up some kind of morphine machine that I think will constantly supply him with the morphine and has some kind of 'pain' button
that he can hit to up the amount at times he really needs it.
I think ALS and depression go hand in hand, especially for those who have the rapidly progressive version.

 

[cris]

So Glad to heart that he is getting some relief! Will pray that all goes well for him! You take care of yourself too!