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AVM Survivors Network

Pain managament


#1

Hello,

I am new here and hope some could share experiance. Please inform if my question is not suitable for this group. And sorry in advance for my english - My native language is Lithuanian.

My question is regarding chronic pain. Do you have en experiance how to manage it?

Situation shortly:

6 year ago diagnosis of arteriovenues marformation of spine has been confirmed for my father. Before that doctors thought that shadows they saw are metastasis of renal cancer and the only way to do something was radiotherapy. Then we changed a lot of doctors and after more then two years we had fist surgery - malformation was fixed with glue (sorry I do not remember the name of procedure)

Today my father is disabled from the waist. However he feel chronic pain in legs and back. Sometimes he talks that it would be better to die than to suffer THAT pain. We live in very small country and as far as I understand nobody knows how to help him. He is taking morphine and other drugs few times per day, but pain decrease only a bit..

Do you have expariance how to fight with the pain? I would be very glad if you could share your experiance with me.

Thank you!


#2


#3

Hello Lithauen, here Germany! Has your father the pain since the spinal embolisation (thats the word for the glue)?


#4

Hi, Brigita:
I had a condition similar to your father's--a spinal AVM (T6), which was first embolized and then surgically removed in 2008. Since then I have been in almost constant pain from the waist down, although I don't think my pain is as severe as your father's, since I haven't wanted to die. I have not found anything that really helps, although stretching and exercise keep me mobile. You say your father is on morphine--here in the States, you can have a pump implanted in your spine to release micro doses of the drug; I have read mixed reports of this procedure's effectiveness, but you might want to research it further. There are several other threads on this site that discuss pain and pain management procedures. Good luck and God bless.
David


#5

Hello, David,

thank you for your advises. It is really very helpful! I will try to ask here in Lithuania about morphine pump.
There are one more procedure which has been offered by our neurologist - some kind of electrodes can be implanted into spine (they have to stop pain signals, and they do not reach brains). Now it is more than half year we are waiting answers from government institutions regarding financial support of this procedure. Most likely they will not agree to suport, but we decided to do it by ourselves. have you ever heard about it?
one more question regarding morphine - some people believe to use it every day is very bad (and it could cause even more pain), and some of them achieve better results after detoxication. What is your opinion?

Did your pain go out after a surgery? what kind of surgery did you have?


#6

Hello Michael,

nice to hear from Germany (it seems that you are so close)!

Oh, I am so happy I could talk with people who know about this problem!

My father had spinal embolisation - during the procedure they find that it was fistula. And they also ascertained that nerves below fistula are dead because of radiation.
However the pain is constantly increasing from the beginning. The pain on legs (firstly only in knees) was the first symptom he had. And unfortunatly nothing have changed after the embolisation, he feels like somebody keeps his legs in fire :(. It is realy very hard to see it and do not know how to help him.

thank you for your answers,

regards


#7

Hi, Brigita:

The surgery I had was to remove the AVM after the embolization failed. I have had pain ever since the surgery (and before, too).

Morphine is addictive. You need more of it the more you take. The pump implant is supposed to use very small doses of the drug. I don't use it and I have not had the implant, so I can't say much about it. There are other discussions on this site specifically about the pump.

And, no, I have not heard about the electrodes in the spine to stop pain. Hopefully your father will be approved for the procedure, and hopefully it will have a good outcome for him.

As I said, look through these discussions. There are many specifically about pain and pain management.

Regards,
David H.