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Wendy Matt
| | Posted on Friday, January 06, 2006 - 06:24 pm: | |
I’m a 37 year old lady and a 23 year survivor of LQT2 (HERG) (see my survival story if you are interested). I got my first AICD, back when they were called an ICD, December 29, 1986. It was implanted in the muscles of my abdomen. I never thought of myself as a fossil (this is how the doctors described me) until the wires for this type of AICD (the abdomen type ) was no longer in use and replacements were not available…………
In February, 2004, I had a duo: AICD/pacemaker model: installed in my shoulder/clavicle/chest. A recall of this model made me get a new one in February 2005. (I'm 99% paced and I have survived a lot of documented arrests, so this is a life necessity for me ~ of all of the doctor’s cases, I was #1 on his list of patients to contact)
Anyway, my left clavicle is now in constant pain............when the generator was in my abdomen muscles, it used to go up under my ribs and I had to "jimmy" it back into place. Now it seems to be trying to move under my shoulder/clavicle…………….it does not succeed, but it tries.
The only respite I have for it is when I sleep. I put my arms under my head and the stretching and angle helps the pain tremendously.
Has anyone else experienced this pain? Is this normal? My surgeon keeps saying it is, but I do not know if I believe him. I have a history of cardiologist who did not like the medical procedures, only to end up needing them themselves.
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Bionic Roadrunner
| | Posted on Friday, January 06, 2006 - 06:49 pm: | |
I do not believe you should have any pain. It sounds like your ICD is in a bad spot or has moved since implantatation.
I have had two ICDs in my abdomen and two below my collar bones and have never had any pain.
If you can, go for a second opinion, but do not believe that your pain is normal.
I know a lot of people with ICDs and usually when they have pain it is because of an infection or a bad placement or a shifting of the device.
Good luck. |
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