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Dr. Chip
Dr. Chip, Doctor (MD)
Category: Health
Satisfied Customers: 32782
Experience:  Over 20 yrs of Family Practice
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My rt forearm spontaneously swelled w/ pitting edema on

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My rt forearm spontaneously swelled w/ pitting edema on 1-17-13 & while it's subsided, it is still present & I now have nerve pain. No injury, bite, recent surgery, cancer, etc) I've had every test (blood, ultrasounds, venogram, MRI & acupuncture) & everything came back NEGATIVE. I even developed a rare brachial vein DVT 2/15/13 that resolved after about 2 wks w/ a course of lovenox + coumadin. Ten Drs have "never seen it" & "can't explain it" & have dismissed me w/o a recommendation. HELP!!!
Hi--did you have nerve conduction studies of the arm and an MRI of the neck and chest?
Customer: replied 4 years ago.

Oh, yes. I forgot about the EMG (I think that's what it was called) "nerve test" & a chest x-ray...both negative.

I also had xrays of my spine taken recently but no MRI on neck or chest.

OK--just your forearm is involved and not the upper arm?
Customer: replied 4 years ago.

My forearm from just above my wrist (about 2") to just past my elbow. The elbow region seems to be where the most swelling is currently.

The MRI suggested that I have very slight 'tendinosis' and subcutaneous swelling (which is obvious). It comes and goes with use of my arm and the nerve pain is sometimes significant.

OK--you said the DVT had resolved--can you tell me exactly what you meant by its resolving?
Customer: replied 4 years ago.

On Feb. 15th I was dianosed with the DVT but the swelling had been present for one month prior to that diagnosis but without pain.

When I felt pain in my bicep, I figured a possible clot so I went to the ER and they confirmed that with a venous ultrasound.

My hemotologist then gave me those really fun Lovenox shots to take every 12 hours for a week along with a course of coumadin, which I finished about 2 weeks of, and upon revisiting the ER (bc I developed more of the same swelling along with nerve pain and I got scared) they repeated the venous ultrasound and found that the clot was gone.

My hemo kept me on coumadin for a few days but then took me off of it all together because she said that it was very rare to have a DVT in that vein so she said more of the coumadin (which I asked to be taken off of asap...I was thinking 3 months...) wasn't warranted.

OK--sorry for dwelling on this but you didn't have a second venogram to show that there was no clot left?
Customer: replied 4 years ago.

No worries, I've been dwelling for almost 4 months on this. And sorry for the delay, I was consulting my notes for clarity.

That is correct. I had one venogram only, following the DVT diagnosis & course of coumadin.

The DVT was diagnosed via venous ultrasound, not the venogram.

The venogram was clear (after the ultrasound showed no clot).

I have not had another venogram since.

My hemotologist said that there shouldn't any swelling left since the clot is gone but...the swelling came first.

The clot isn't what caused the swelling...

If it matters, I am 5'7", 130 lbs., fairly athletic & avid health conscious eater = otherwise (very) healthy.

OK--just one more question--was a lymphagiogram considered--like a venogram but looking at your lymphatic vessels and not your veins?
Customer: replied 4 years ago.

It was considered but unwarrented for some reason...

I have been 'dimissed' as I said by my primary (& other Drs) who suggested that I visit one of the University hospitals (I am near Chicago) where someone there may have seen this type of thing before because they see 'unusual' pt conditions but none of them could direct me to which field of practice I should begin at because none of my tests came back positive for anything. Is there such a thing as a 'lymphatics specialist'??

I've done that LDM and it doesn't seem to do anything... ??

OK--the type of specialist you'd be looking for would be a neurologist and perhaps a vascular surgeon if this were a problem with lymphatic blockage but first the cause would need to be found so I would get an MRI of your chest and upper arm to look at that. I don't think this is a tumor in your neck or in your axilla, but that could be the problem. That said, you may well still have a clot in a vein in the same area that just hasn't been detected as yet. Finally, with the nerve symptoms, you could have reflex sympathetic dystrophy which is a type of nerve inflammation that is usually seen after injuries but not always. I would suggest at this point that you first consult a neurologist and a vascular surgeon at one of the University teaching hospitals.
Customer: replied 4 years ago.

Thank you for your replies, I appreciate your help.

I have a question though. You said that there may still be a clot there but wouldn't that venogram have picked that up?

That venogram was done after the ultrasound confirmed the clot was gone.

And, wouldn't that EMG be positive in some way if there was some nerve inflammation present?

Frankly, all of these tests are seriously 'adding up'!!

Have you seen this before?

Depends on the kind of venogram and if we're talking about a clot outside the brachial vein that might not be seen on ultrasound or a standard venogram. The EMG alone wouldn't rule out RSD but I just added that possibility to give you the complete differential here. Yes, I have seen this before and it has been either a missed venous clot or a lymphatic obstruction in the patients I have had.
Customer: replied 4 years ago.

Thank you. Ok, well one last note then.

Is it possible to have a lymphatic obstruction without injury that developed "spontaneously"?

Regarding the RSD, I seem to only have the pain & swelling symptoms and none of the others that typically accompany that. I should look for a vascular specialist and they will look into the lymphatic issue possibility for me?

Thanks again.

No--usually there's either a tumor or sometimes a past infection can block the lymphatics. Pain and swelling alone can be seen with RSD. And yes--a vascular surgeon is the one to evaluate a lymphatic obstruction. You're very welcome but please let me know how it goes and please remember to rate my service to you
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