Update to endless pain

Hello,
Thank you everyone again for your thoughts and prayers. Today I went and did a lung scan that came back negative for pulmonary embolism. Nice to know, but...please forgive me...I am absolutely frustrated. The doc is relying on solely the scan (which only looks at the lungs and can be highly inaccurate) to say I have no clotting going on, but wouldn't do any additional testing until I mentioned it. Now I am on to ultrasounds of both legs and my bad arm.

I have another condition that could be driving up my VERY high d-dimer level, but that condition does not explain the chest pain I've had and the arm swelling.

I've been wearing a pacemaker for 12 years now and have never had these problems until recently, especially the arm swelling and just this last week my own pacer doc was writing it off as likely some "venous drainage." Gee, I wonder why.

Even the tech who injected the tracer into my arm decided not to use that bad arm because of the swelling.

Sorry, these people just frustrate the daylights out of me.
Dodi

7 Comments

Reply to Lucky

by Dodiad71 - 2007-06-15 11:06:46

HI Lucky,

Thanks for writing. My arm isn't splotchy and colder. But the pain feels like the kind of ache you get when your circulation is cut off.

I had already asked the doc about a venogram. She says they don't do those any longer. And this is a major academic medical center. I just don't get it.

Oddly, it's interesting you mention the superior vena cava. I also have a left sup vena cava (essentially 2 of them) but the importance of that was long ago denied by some members of the medical community.

My pacer doc never even bothered to begin pursuing this arm thing. Only this latest internist has, and even she is seemingly dropping the ball. She has put through the orders to get doppler ultrasounds; that's about all I have right now to go on.

At this point, I think the next best thing I can do after the ultrasounds is go to the ER when I get really bad pain again. It's so pathetic that it may come to this.

Dodi

update on pain

by luckyloo - 2007-06-15 11:06:52

dear dodi,

they need to look for occlusion of your superior vena cava and/or the subclavian vein where your leads pass through. fibrous scar tissue builds up there and can cause your symptoms. an upper extremity and SVC venogram is the test of choice.

is your arm splotchy and colder than the other?

luckyloo

endless pain

by luckyloo - 2007-06-16 03:06:45

dear dodi,

at u of michigan they did my first venogram. that is the test of choice to look for SVC occlusion/clots in the SVC. i'll bet your medical center does venograms for SVC occlusion. cleveland clinic even does them. my local hospital repeated my venogram because u of mich didn't visualize the whole SVC area of interest. my venogram was done with a femoral vein stick.

do you have this full feeling in your face and neck when you lay down or bend over? do you have any protruding veins in your neck? you don't have to have all the signs to have it. some preceed the others. it can take a long time for an SVC occlusion to start. mine is just over 50% occluded. i have to working leads and one old lead running through. check out SVC occlusion on the internet and see if it could be you. bring it up to your dr...get a 2nd opinion. swelling arm is a sign of it.

keep us posted!

luckyloo

keep insisting!

by bambi - 2007-06-16 04:06:06

Hi Dodi,
I just spent the last 45 minutes posting a response to you. As usual, whenever I write a lengthy response, it never goes through! So, unfortunately, I don't have an extra 45 minutes to write everything over, but I have written a few posts about my experience with SVC syndrome. You could look them up in the archives probably under complications. Luckyloo is right though. They DO still do venograms, and it is the only foolproof test! A CT scan showed nothing, and the venogram showed a 95% blockage of my SVC! So keep insisting! This is a complication of pacemaker implants and the scarring also caused by ablations. Dr.s do not like addressing this complication however! If you have any specific questions, please don't hesitate to ask, since I've been down this road!
Let's see if this one goes through!
Bambi

Another opinion!

by auntiesamm - 2007-06-17 01:06:04

If I were you I would get a second opinion ASAP - and if not satisfied, get a third. Your health and life are too precious to fool around with. Perhaps if you tell your doctor you would like another opinion he/she might kick into gear and get something done. I have found in dealing with doctors or anyone else for that matter, if you put it in writing you will be much more likely to get a positive response. A paper trail can be very damaging to the addressee! Please become proactive and get yourself taken care! God bless and keep you safe.
Sharon

Document everything

by Suze - 2007-06-18 01:06:44

A friend of mine went through a similar problem with the lack of concern over her symptoms (Nothing with her heart, though). An acquaintance who was a medical lawyer told her what to try.
She called the offices and doctors looking for specific times, dates, etc of previous office visits and phone calls pertaining to her questions regarding her concern over her symptoms. She told them her attorney advised her to get everything documented and put in a journal for future reference. Then she asked for the name (and spelling) of the name of the person she was talking to. . .All of a sudden, they were taking her seriously.

More tests were ordered and her problem was resolved
finally.

Hope this helps. If it were me, I'd also get a second opinion - even if my insurance didn't cover it.

Good luck to you,
Suze

lymphedema?

by metropark - 2007-06-20 10:06:14

Hi Dodie...

tell me, have you ever had any lymph nodes removed or lymph nodes in that region tampered with in any way...like radiation therapy, surgical scarring, etc???

You know you're wired when...

You play MP3 files on your pacer.

Member Quotes

I am no expert, but I believe that without the defibrillator that I have, I would be dead.