Just a quick update...

Hello everyone, still no diagnosis.

Went to pain specialists...got more pain meds. They questioned whether my body is reacting to the pacemaker itself (good thought, except my EP doesn't buy it). Went to vasc guy--spent not more than 5 minutes with me without even looking at my arm (or even my legs with the bad varicose veins). His "intern" only did a little without even letting me completely tell him what was going on. Total waste of time.

Went on to ortho. Didn't take them 5 minutes before they said it wasn't an ortho problem. I asked about Thoracic outlet syndrome and he said no--despite my arm swelling he could not duplicate many of the symptoms in my arm. It is also definitely not cellulitis.

In the meantime things remain the same. Tomorrow I am headed to my EP's colleague who's expressed interest in extracting my device. I believe the pacemaker has a lot to do with this current problem, but why this problem is occurring in the first place still is undetermined. I could get the machine extracted and have it relocated (I need one to live) but I am concerned this whole thing could start all over again with the other side.

Well, here goes......
Dodi

2 Comments

Hi Dodi,

by Gellia2 - 2007-07-23 03:07:53

If you have wires that enter your heart via the Superior Vena Cava, I still would think in terms of SVC syndrome. It is not the same as TO syndrome. SVC can come from numerous wires in the vessel and, in some cases, requires stenting of the vessel. TO syndrome has more to do with the nerves that run from your arm to your neck. SVC can cause arm swelling. I have had this where my arm got a bit swollen and I had a "full" feeling in my face and neck. It was self limiting and went away after a couple of weeks.
I'm not sure this is your problem, but it sounds alot like mine. I did not have the pain you have in your arm, but did have pain across my chest.
I wish you the best of luck in your endeavor to find an answer. Please still consider SVCS.
Gellia

If all else fails.

by Stepford_Wife - 2007-07-23 06:07:51

Hi Dodi.

It doesn't look like you are going to find any answers, among your physicians, since their attitude is to dismiss everything you say, as fast as possible.
There is going to be a forum on the Cleveland Clinic site, on July 24, and a cardiologist will be on line to answer questions.
If you are interested to try and see if you'll have better luck, the Cleveland Clinic Cardiac Health is one of the best in the country.
Please, give it a shot. I wish I could do more for you, I'm sure trying as hard as I can.
If you need to ask additional questions, just go to the website www.clevelandclinic.org/health/chatreg/chatpromo.asp

~ Dominique ~

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Upcoming Chat
Topic: Heart Devices - Pacemaker, Defibrillators
Start Time: 12:00pm (Eastern Standard Time)
End Time: 1:00 pm (Eastern Standard Time)
Date: July 24, 2007
Description: Over the last several years we have heard about the great strides in heart devices, new pacemakers and implantable defibrillators, treating heart rhythm problems, improving heart function, and saving lives. But we have also heard news stories about manufacturer recalls and potential serious problems related to the devices. All of this can leave us confused when confront with the need for one of these devices. Dr. Wilkoff, a Cleveland Clinic cardiologist and Director of Cardiac Pacing and Tachyarrhythmia Devices, will provide answers to your questions about pacemakers, defibrillators and what is on the horizon for heart devices

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Life does not stop with a pacemaker, even though it caught me off guard.