More info about my case

Hello everyone...I thought I'd fill everyone in so far on what's been done. At little history first...

Current machine placed in May, 2006 under the muscle after previous one began attempting to leave my body in Dec 2005. That machine replaced another previous machine that began trying to leave my body in July 2005 only a few short months earlier. In both cases, infection was suspected, but could not be found despite extensive blood work (including cultures), x-rays, echocardiogram. I saw an infectious disease specialist who didn't think infection was involved either.

Testing:

D-Dimer blood clot test to rule out pulmonary embolism--Very high positive.

Lung scan with perfusion only--Negative for obvious blood clots
Ultrasounds of both legs and left arm--Negative for obvious blood clots. (Could there be smaller ones?)

I do suffer from severe varicose veins in the right leg, however.

No further tests have been done for blood clots. Not even a repeat of the D-Dimer to see if it was an acute or chronic elevation.

EMG--to study nerve/muscle conduction between my neck and arm. Normal.

Gallium scan to look for hidden infection showed "faint activity" in the vicinity of the pacemaker, but too nonspecific to determine infection or inflammation. (Gallium scans, to my understanding, in general are rather nonspecific anyway)

Low grade infection remains a possibility, but other blood work does not support the diagnosis. The fever is rather recent, but is not yet labeled a fever of unknown origin. The skin over the pocket is normal in color, normal in temp and has no pus is leaking from it.

The pain I've had has been ongoing sometime (getting worse) but the swelling in the arm is a more recent development over the last number of weeks. An ortho injury is suspected (and not the pacer) but I've had no injury to that arm whatsoever.

I've suffered from chest pain that has made it incredibly painful to breathe in deeply. Between this and the arm pain and swelling, one of my docs ordered the dimer which can back off the charts. But that doc has all but stopped pursuing it.

After a little research of my own, I began to wonder about RSD, but more so about another condition often tied to it called Thoracic Outlet Syndrome (also called pectoralis minor syndrome). I also was looking back at some notes from a previous physical therapist that explained that much of my pain is located over the pectoralis minor muscle. Thoracic outlet syndrome can be caused by pacer hardware (I have 3 wires in the same left subclavian vein) and clots.

I briefly mentioned the Thoracic Outlet possibility to my doc's nurse and it was mostly dismissed.

Whewww, sorry for the length. I hope this answers many of your questions. Thank you to all for your thoughts and prayers. I am off today to begin another round of medical boxing. LOL
Dodi

8 Comments

Ask the doctor!

by auntiesamm - 2007-07-17 03:07:03

Hi Dodi, You say when you asked the nurse about thoracic outlet syndrome SHE dismissed it. Did you ask the doctor when you saw him? I would NEVER accept such a response from the nurse (no offense to you nurses). Your physician is the one to answer these kinds of questions. Have you given any thought to chronolocially writing down this entire change of events? Good luck - keep searching! God bless.
Sharon

Hi, Dodi

by Gellia2 - 2007-07-17 03:07:28

Sometimes SVC syndrome is dismissed because it can be self-limiting. Meaning it can resolve itself. In other cases it can be so severe that it requires a stent to keep the blood vessel open. I also have three wires and SVC syndrome for me was minor and self limiting just involving a fullness in my face and neck for a short period of time. Had it gone down my arm, I would have sat on my Drs. desk until I got satisfaction. My dr always told me, if I have ANY problem he would take care of it and he does. Yours should do the same for you. I do hope you get some satisfaction to your problem. Hang in there.
Gellia

More help?

by auntiesamm - 2007-07-17 05:07:39

Hi Again Dodi - You have been dealing with way more than any of us should have to! I am wondering if you have considered talking with a counselor, i.e., priest, minister, rabbi, or any other professional who can provide additional support. For any of us, what you are dealing with would be overwhelming! It is always good to have someone who can help you organize your thoughts and the issues, and just lend extra support. I believe all of us at one time or another need this! I'm concerned for you trying to deal with SO MUCH at this time and the frustration from not getting answers or the help you may need. God bless and keep you in the palm of His hand.
Sharon

I agree

by Gellia2 - 2007-07-17 08:07:52

with auntiesamm, Dodi. Talk to your Dr. about Thoracic Outlet syndrome (also called Superior Vena Cava Syndrome). It involves where the wires are threaded into the vein. You have three wires in there (me, too!). Don't depend on a nurse dismissing you (and I'm a nurse!). Talk to your dr and get satisfaction. No one should hurt because they have a pacemaker.
Gellia

Have

by Gellia2 - 2007-07-17 10:07:34

your doctor check for Superior Vena Cava syndrome.
I hope you will get some satisfaction in your search to take care of this problem. Accept nothing less than your complete satisfaction. Good luck.

Another suggestion.

by Stepford_Wife - 2007-07-17 11:07:06

Hi Dodi.

Has anyone you've seen or spoken to mentioned the possibility of Cellulitis? Read on.

Cellulitis (sel-u-LI-tis) is a potentially serious bacterial infection of your skin. Cellulitis appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly.

Skin on the face or lower legs is most commonly affected by this infection, though cellulitis can occur on any part of your body. Cellulitis may be superficial — affecting only the surface of your skin — but cellulitis may also affect the tissues underlying your skin and can spread to your lymph nodes and bloodstream.

Left untreated, the spreading bacterial infection may rapidly turn into a life-threatening condition. That's why it's important to recognize the signs and symptoms of cellulitis and to seek immediate medical attention if they occur.


There is a lot more to read, you can access the rest at:
www.mayoclinic.com/health/cellulitis/DS00450/DSECTION=

Good Luck, I hope you finally get some answers. I'll keep you in my thoughts.

~ Dominique ~

Another suggestion, cont.

by Stepford_Wife - 2007-07-17 11:07:21

Oops!

I must have run out of room.
The above mentioned web site, ends with =9.

~ Dominique ~

I agree as well.

by Stepford_Wife - 2007-07-20 12:07:47

Hi Dodi.

Arm DVT.

While most deep venous thromboses (DVT) occur in the leg, they can also form in the deep veins of the arm. The deep veins of the arms are called "axillary vein" and "subclavian vein" (see figure). Risk factors are (a) central venous catheters, (b) strenuous exercise, (c) thrombophilias (such as factor V Leiden, prothrombin 20210 mutation, and others), (d) oral contraceptives and hormone replacement therapy. Arm DVT often affects young, active, otherwise healthy individuals. In some of these individuals pressure by a cervical rib or the first rib, or by slightly atypically running muscle strands puts pressure on the axillary vein (see figure), leading to compression and thrombosis. The disorder has therefore also been called "thoracic outlet syndrome". And since it has been observed in physically very active persons, it has also been termed "effort thrombosis". Another term is Paget-von-Schoetter syndrome. Symptoms are similar to DVT symptoms in the leg: diffuse pain and swelling of the arm and slightly bluish discoloration, possibly some prominence (dilatation) of the superficial veins of the arm and upper chest wall. During the acute phase of the clot formation (first 2-3 weeks of symptoms) pieces of the clot may break off and travel to the lung, causing pulmonary embolism (PE).

These arm DVTs are not to be confused with superficial thrombophlebitis of the arm. Superficial thrombophlebitis is a localized thrombosis of superficial arm veins. It is typically very painful, but the pain is localized. Superficial thrombophlebitis is not dangerous, since it does not cause pulmonary embolism. Symptoms are typically (a) intense localized pain, (b) localized redness (c) localized swelling, and often (d) a palpable cord. Superficial thrombophlebitis is often triggered by a peripheral venous catheter.

Treatment of arm DVT: In the young person with extensive arm DVT thrombolytic therapy with "clot busters" should be considered, followed by heparin and warfarin. If the deep arm veins open up then a venogram with the arms by the side and lifted above the head may be indicated to determine whether there is compression of the axillary vein (thoracic outlet syndrome). If a residual narrowing or compression is found, then stenting or "thoracic outlet syndrome surgery" (rib resection) should be considered. However, this is a complex and big decision, which should involve a good hematologist, the input from a vascular radiologist and a vascular surgeon.

No generalized recommendations can be given as to how long to treat the patient with arm DVT with blood thinners (warfarin = coumadin®). It is not well known, what the risk of recurrence is once these patients discontinue (warfarin = coumadin®). A recent study (reference 1) examined (a) the risk of recurrent clots, and (b) the risk of long-term arm problems (swelling, pain), called "postthrombotic syndrome" by studying 53 patients with arm DVT and following them over 5 years. Recurrent clots occurred only in 3 patients (involving the same extremity in 2), but the publication unfortunately does not mention how many of the patients were kept on warfarin (= coumadin®) for only a short time (6 months or similar) and how many stayed on long-term warfarin. Regarding persistent symptoms, the study demonstrated that postthrombotic syndrome occurred in one-fourth of patients (27 %) within the first 2 years.

Depending on the patient's thrombosis risk factors, residual clot, and lifestyle, one needs to consider (a) long-term full-dose warfarin (INR 2.0-3.0), (b) long-term low-dose warfarin (INR 1.5-2.0), (c) discontinuation of warfarin, (d) thoracic outlet surgery. The decision is always an individual one.

According to this article, Sharon and Gellia might be on to something. It wouldn't hurt to mention it to your doctor.
Good luck, we'll keep on searching.

~ Dominique ~

You know you're wired when...

You have a $50,000 chest.

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