lymphedema or carpal tunnel - specialist?

[Kimberly Lewis]

Hi - I have had pretty bad pain in my wrist for a couple months and my GP said it was tendinitis after viewing an xray of the hand. Now my pointer finger and middle are swelling. I saw my Onc and he said carpal tunnel possibly but I am having a bone scan next month. Anyway my concern is lymphedema. I do not have numbness - just pain which gets worse if I use the hand much at all. Does anyone know what kind of specialist covers these symptoms. I hate being told to take and aspirin if I am in risk of permanent swelling! Carried my granddaughter a lot at Christmas and that was the worse time but worth it! Thanks -

[Becky]

Happy New Year Kim

There are special lymphedema specialists at hospitals (even my community hospital has one so it doesn't have to be a major teaching hospital). They are part of the physical therapy department. There are also ones that are "on their own" but I wouldn't generally recommend them unless they are recommended by the Lymphedema Network. The Lymphedema Network is online (Google it as I am not sure of their exact address). I met the woman who has dedicated her life to this at ASCO 2006 when I attended with the group (Her2 Group) when we had a booth there. I met her in the Patient Advocate lounge and had a long conversation with her. She noticed that I had a lymphedema alert bracelet on that I bought from her site (I don't have lymphedema but the bracelet says "No blood pressure or needles in this arm - just in case I am in an accident so that no mistakes are made).

The site has bonefide lymhedema specialists listed there by state or you can email them and they will let you know more if the site is not 100% up to date.

Keep your arm elevated (lay on the couch facing the way where you can lay your arm up top the couch). As you do this, squeeze your hand 10 times every so often to pump the fluid down (not too much 10X maybe every 5-10 minutes). When you go to sleep, prop it up with pillows so the fluid can flow out. Baby that arm for alittle while. I had several swollen fingers on my affected side when I moved about 2 yrs ago. The repetitive motion of wrapping and unwrapping dishes, glasses etc (and putting them away caused it as packing and unpacking is done is such a short timeframe - too much all at once). It went away and I never had a problem again. I hope this helps.

[Lani]

there are two kinds--an orthopaedic surgeon hand specialist and a plastic surgeon specialized in hands as I understand it . Of the two, I would think the orthopaedic hand specialist would be more attuned to working out whether this was lymphedema, swelling due to being on herceptin ( if you are on it still), tendon changes secondary to being on an AI (if you are)--these even show up on MRI can be are very real--,spurs from arthritic changes which narrow the canal the nerve passes through, early diabetes, rheumatoid arthritis or other conditions which predispose to carpal tunnel or not even carpal tunnel but some other condition (one of which can be radiation therapy related)
without immediately resorting to the thought of operating on it.


The orthopaedic hand surgeon should be comfortable with diagnosing your problem(whatever it ends up being) and should be comfortable/acquainted with the many ways to treat your problem short of surgery. I would doubt , however, widespread awareness of the effects of AIs on tendons as the information is relatively new and is published in journals not widely read by those in other fields.


If you are on AIs, I would put "Lani AIs (or aromatase inhibitors) tendons" into the search box at the above right and if you don't find the article go to Google, PubMed, and then put in" aromatase inhibitors MRI tendon" and print out at least one of these articles.

Lymphedema specialists are few and far between--I COULD think of one reason to prefer one though. It is unclear to me if a breast cancer patient should have an EMG (an electrical test involving tiny needles) on the involved side or if it is contraindicated. If it gets to a point where someone wants to do that test on you, consulting with such a specialist might make sense. I have heard two speak, one from California, one from Ohio, but believe there are several websites for lymphedema which might be helpful to you in locating one. The two I have heard--one a vascular surgeon, the other a PhD would not have been comfortable diagnosing or treating carpal tunnel syndrome or tendinitis, so I think my thoughts above about thinking of having a hand specialist evaluate you first remains unchanged.


Hope some of this helped.

[PinkGirl]

Hi Kim

I am lucky to be at a cancer centre that has a
lymphedema specialist. They are hard to find.
She is a physiotherapist who has specialized in
lymphedema. I went to physiotherapists at
home who told me that they knew very little
about it. I hope you're able to find someone
to help. Good luck.

[Kimberly Lewis]

Always good to get some experienced advice! Thanks so much for giving me your input - and happy new year to all!