Still in hot pursuit...of a diagnosis

Hello again everyone! I am still trying to get a diagnosis for my arm swelling and pain. I have since graduated to increased pain meds including motrin and percocet taken together. The swelling is no different. Been to a second ER by pacer guy. The ER staff read the pacer doc's notes (which include his denial of pacer involvement in my symptoms which started after it was implanted) and went on that. I was sent home again with only additional pain meds....and, by the way, a documented fever now.

This week I am off to a few specialists...A pain doc to cover it up, an ortho to look for something I don't believe they're going to find and a vascular doc that I decided to pursue in light of my pacer guy's rather miniscule attempts at finding a reason for this nightmare. This is making for a rather interesting week. I will write again when I can. The determination for an answer supported by the caring folks on this website will not be forgotten.

Thanks again,
Dodi

7 Comments

Keep On Them

by hooimom - 2007-07-16 06:07:03

Dodi,

Pain, swelling and a fever and they still don't take it seriously! That is just nuts. Keep searching until you find the right doctor to give you answers and help. I can't even imagine how frustrated you must be right now but try and keep a good outlook. Let us know what these doctors say.

Michelle

continued pain

by patpeter - 2007-07-16 07:07:25

hi Dodi,
You say the swelling and pain occured after the implant, I wonder if you have a reflex sympahtetic dystrophy. I'm not sure of the exact description but it can occur after surgeries. I think the vascular surgeon will know about this as well lymphedema which is swelling caused by lymph glands that can also occur after surgeries. I'm a Physical Therapist so am not an expert on these things but know that they do exist. So hopefully you will get some answers soon, I hope you will be feeling better soon too. You take care and let us know how you are.

Pat

dodi's pain

by luckyloo - 2007-07-16 08:07:30

dear dodi,

i'm glad you're going to a pain dr. as pat suggested, you may have RSD. i believe i mentioned this to you before. i hope your pain dr. is experienced at identifying it because it can be misdiagnosed.

i have RSD in my rt. arm. it is terribly painful. you can visit the RSDSA website by typing in those initials and read up on it. it's a very good site. stands for "reflex sympathetic dystrophy society of america.

have you had a nuclear study of your arms?
keep us posted!

luckyloo

Documentation?

by auntiesamm - 2007-07-16 10:07:52

Hi Dodi - What a nightmare you have been living since your PM! I am so sorry you have had to go through all this. I cannot add anything to what has already been posted here but I have a question of you and suggestions. Have you written all of this down?Sometimes it is impossible to get the attention of a physician or other healthcare professional unless it is written down and they can visually take it all in. Having been in the hospital industry for many years I know this is a fact! Were it me I would go back to the PM date and chronologically list the symptoms, outcome of visit to doc, what you were told, visits to ER and what was said, etc.. You get the idea. Once completed get a copy to each of the physicians, nurses or others who dismissed you without good answers. When each can see it in detail someone in the bunch might take it seriously and try to help you. In the hospital world "if it wasn't written down it wasn't done". If you decide to do this and have any questions feel free to let me know. Good luck and God bless you as you continue on this frustrating journey to good health.
Sharon

Hope something works soon Dodi

by Jeffia - 2007-07-17 06:07:45

I am new to the club, but have worked with bacteria and low-grade infections before. I have tried to follow your story by reading from your first post, but I'm not sure when you had your latest PM inserted.

My understanding of gallium nuclear-medicine scans is that they can detect a source of infection, or a collection, if it is of a reasonable size. I gather your scan must have been negative.

That brings me to the "new" fever you are experiencing. Is this a "PUO" or "FUO"?
(pyrexia of unknown origin, PUO, or fever of unknown origin, FUO, by any chance?)

Is it possible you have a low-grade infection at the pacemaker site, or actually in the heart with the wires?
I wonder if seeing an infectious disease specialist would be of assistance. I would be thinking of having a minimum of three sets of blood cultures taken AT THE ONSET of your fevers.

Blood cultures are a different type of pathology test. They actually are bottles of culture medium that can grow bacteria from what should be sterile sites, such as your blood stream.

Blood is taken from a vein using sterile technique and injected into the bottles which then go to a Bacteriology Lab to be incubated over several days. Small numbers of bacteria can then multiply to detectable levels. Even so-called skin bacteria CAN be significant.

Anyway, just a thought to add to the puzzle, but something worth considering.

Keep searching for your answers. You are your own best advocate.

All the best, Jeffia









Keep fighting!

by bini - 2007-07-17 09:07:17

Dear Dodi,
I also had swelling in my arm after my PM surgery. I was from out of state when i got ithe PM and was staying in a hotel. I noticed my left arm was swollen and the hand was as well. I had a vein thrombosis due to the IV. So I went back to my Cardio's office and was told to try to prevent an infection from occuring I had to put a hot wet compress at the site of where my IV was.
Be persitant with the Dr's! Make sure you request the tests you want done! Hopefully you will get answer soon, and be on your way to improvment!
Good Luck with everything and please keep us updated!
Bini

Has anyone mentioned

by Gellia2 - 2007-07-17 09:07:46

Superior Vena Cava syndrome to you? It can cause arm swelling and swelling in the neck and face. Also pain.
It's from thrombosis in the S. Vena cava where your wires probably were placed and it backs the blood up. Can be very painful down the arm and cause the swelling you describe. Just a thought.

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