no answers

I'm back, I've been in the hospital since July 20, My incison area where my difib/pace maker is swollen, right along with my left arm. they have ran a lot of test, and can't find the cause. I don't have an infection of any kind, one of the veins in my arm is narrow, but they say this is not causeing the pain and swellen. They say I should not be in pain or swellen. but this device causes me pain and discomfort everyday that i have had it. Anyone have any ideas on what the doctors or I might be missing.

5 Comments

No answers...

by Pookie - 2009-07-22 08:07:20

Hi sugdaro.

I'm so sorry to hear that you're going thru all of this.

So, when you were hospitalized, didn't anyone give you some ideas for this? I don't understand, nor will I ever, how the medical community can sometimes (emphasis on sometimes) let people leave the hospital in the same shape they came in. Me being one of them!!!!! many many times. So maddening. So frustrating.

It's good to hear that you don't have an infection though.

Another thought I just had: did they do an ultrasound on your arm??????? If not, I'd be asking for one. Or a CT Scan??? Did the doctors rule out a blood clot?

I'm sure that someone in our little community might have an answer or at least a tip that might point you in the right direction.

Did you think of asking for a 2nd opinion???

Gee, I sure wish I could be of some help.

Keep the hope! You'll eventually find the answer.

Pookie

no answers

by sugdaro2005 - 2009-07-22 08:07:45

Thanks Pookie for your comments. I had the ultra sound, ct scan, and they looked at the veins in my arm and said one was narrow and growing bridges, but they didn't think that was causing the problem. They ruled out blood clots, but they started me on blood thinners. they also found a cyst in my left shoulder by the pacer, but they said that was not causing the problem either.

good luck

by Tracey_E - 2009-07-23 07:07:07

No advice, but wishing you luck finding a diagnosis and cure. It sure sounds like an infection, how weird. I'm with Pookie, it might be time to get another opinion.

We had no answers either..

by cryssg_2000 - 2009-08-06 12:08:44

Our daughter became swollen the size of a baseball at her incision sight with bulging viens in her chest and left arm just short of two months after surgery for a new pacemaker. This was when she was 7 yrs old, she is now 13. At the time there was no rhyme nor reason, as she was beyond the time of having an infection. Her large viens ended up collapsing and we were told her smaller ones would expand to compensate. Sounds very similar to what you are experiencing, with the exception of the pain.

Did you have any internal bleeds that you know of at the time of your surgery? I ask this because, we had no answers either, but she had a chestbleed from the trauma of the surgery being done twice when she was 7 (she literally came too and they knocked her out to go back in to re-do). Not to say you will have any of this, but in our case our child has had many complications that the doctors said was not the pacemaker. Well, after 2 years of advocating on her behalf, I insisted on a stress test and low an behold, the pacemaker was cutting in half instead of doubling. Turns out that neither lead was ever really attached properly, so she is on "motion sensor" now and is no longer experiencing extreme fatigue and exhaustion for trying to pace on her own at 37 bpm when she thinks she can go higher. Her lower threshold is set to 50 now, so she won't have to struggle. It was taking around 17 hours to recover from sit-ups and push-ups in gym class. It's not as high as a child ought to be, but it's keeping her out of the OR. I want you to know that you are not alone and encourage you to keep a journal of your symptoms, and to put them in list form to give each time you are seen or even write a letter to your cardiologist if you do not feel you are being investigated enough to get answers. If you are telling them you are experiencing pain and they are not responding, I would write to them, and get a 2nd or even 3rd opinion if you have that available to you. If you find out more, please us know.

Cryss

some questions got answered

by sugdaro2005 - 2009-08-06 12:08:53

thank you Cryss for commenting, I really to everything you said to heart. My final diagnsos was a blood clot in my arm, that showed up on the ultra sound. they put me on warfarin, and elavil for chronic pain. I got back to the doctor in 2 weeks. I will be telling him that I still experince pain thoroughout the day, where my incision is. So the elavil doesn't relieve it. I have had pain where my incision is since i had the difubular/pacemaker, which was put in March 2009. I am praying for your daughter, she is so young to have to go thru something like this, but guess what. God is holding and guideing her thru this.

Sugdaro

You know you're wired when...

Airport security welcomes you.

Member Quotes

My quality of life is better already and I know it will extend my lifespan.