Going back to LE therapy

Cookie - FWIW, my stage 0, very subtle swelling was ONLY in my upper arm for years.  Now, my big girl's LE is all in my upper arm & axilla/ trunk - no swelling below the elbow.

I'm always trial-and-erroring (lots of both!) for the "just right for me" tx and garments.  I can't wear sleeves with bands on the upper arm and do much better with the ones that don't.  

edited to add: I think everyone's LE is "atypical" - unique and idiosynchratic, anyway.  Finding what works is a long and frustrating process - at least, it was for me too.

Cookie, my LE therapist worked with Robert Lerner and Guenter Klose when they had their Foldi clinic model of intensive LE therapy in NYC. She's still in touch with many LE therapists in NYC.

I was trying to find her former partner, who still works in Manhattan, and couldn't find her address, but found Bonnie Laskinski who is very prominent

Lasinski, Bonnie B (Member)
Clinical Director
M.A., PT, CI, CLT-LA
Lymphedema Therapy
77 Froelich Farm Blvd
Woodbury, NY 11797 USA
Phone: 516-364-2200 

Found her former partner, who she is still constantly in touch with, and is highly recommended by Kathleen Francis MD

Mary Read, LMT, CLT
Lymphedema Treatment Tel: 212-396-2350

Just some other resources. 

Kira

Bonnie is awesome. I trained with her when they first opened the clinic in Woodbury. The Casley-Smiths flew in and trained about 20 of us in LE therapy back in 1992. I ended up going into acute care and orthopedic PT instead, so did not use much of my training (which is why I don't comment too much on LE issues and you will find me giving my 2 cents more about orthopedic stuff). She has been doing this since then, and has seen alot. In fact - I contact her when I have specific questions about my LE, even though I have 3 LE therapists here in town. She just has nearly 19 years of experience behind her and she is an excellent resource!

Cookie - My lymphedema also started in my upper arm. I had NOTHING below the elbow for about 6 months... and then I took a step class. All that waving my arms around stuff and the next day it was in my hand, my forearm, my elbow. And it hasn't left my forearm since(my hand is pretty good, knock wood). It is still in my upper arm too - but once it moved into my forearm the tissue started to become fibrotic. Especially after I started using my JOVI pac in place of wrapping. I don't think this is an issue with all the Jovi's - I think it is because my therapist ordered one with a zipper, and it ends right at my forearm and makes an area where the lymph flow is essentially cut off. I recently started wrapping again - that along with accupuncture and a lymph cream (now can't think of the name of it) has helped reduce my arm from being 2-4 cm larger than the other to being 1-3 cm larger. I am hoping with a few more weeks of consistent night time wrapping and foam inserts to break up the scar tissue will bring it down some more. The other thing that contributed to my LE getting worse is the use of compression sleeves with the silicone band at the top. I didn't realize that it was making such a difference until I started measuring my arm every day after removing my sleeve. I have since tossed a few of the Juzo dream sleeves (which I loved) and am now wearing only the Jobst off the shelf - and at a lighter compression of 15-20 most days, 20-30 for exercise. For me, less is more. Who knew? It is all trial and error. I feel like an ongoing experiment and now that I have learned to document everything, I am able to see if there is a pattern on what is working or not. 

Okay, so I didn't mean to be so long winded! Not sure what happened there! Cookie - go for LE therapy - just because it is not below your elbow doesn't mean it is not lymphedema!

Nordy, Thsnk you for sharing all that wonderful information.

I have also not had good luck with Jovipak and wrap at night, and since my LE is primarily in my hand and forearm, I tend to find with compression that "less is more"--gloves will often trap fluid in my hand.

Before the fracture, I would take off the glove and wiggle my fingers, and the trapped fluid would leave. Now, I wear the gloves most of the time, but still try and move my fingers as much as possible and take some compression breaks. And I made new foam "carrots" for my wrapping, for the MCP spaces.

At one point, NatsFan sent me this amazing excel program her husband created that allows you to track your measurements and it totals them for volume changes--if you pm her, I think she'll send it.

The whole trigger issue, leading to permanent changes always amazes me: although I suppose there was subclinical lymphatic dysfunction and the step class just tipped the scales. I got bug bites, and the hand swelling never went away.

It's part of why the slow resolution of my hand swelling after the fracture upsets me, because the fracture was a direct insult to my lymphatic system--and may leave me with a "new normal"

I have used a brusque but good fitter who does all the work for the big teaching hospitals in Boston, and she firmly believes that with hand swelling "less is more".

You got to get trained by the Casley-Smiths--wow! 

Every thing you wrote just made so much sense--I hope the wrapping and foam break up the fibrosis and the lighter compression lets all the fluid flow up and out.

Kira

Cookie, I think you mean Solaris--and they do make lots of garments for the arm. I have a Solaris/Tribute--and like it. I primarily wrap, but use the Solaris at times. I also like dealing with the company--they're really easy to work with.

http://www.solarismed.com/

I have a jovipak also, but it didn't work well for my hand, and I got a brochure from them that said their garments were considered "liners" and should be used with either the over-jacket or bandages. I think they're made well, just didn't work well for me.

Kira

Nordy, congratulations! My "puppy" is 6 years old, but we got some books by Ian Dunbar when she was little, and although she's not my first dog, it had been 14 years since we had a puppy. And, we went to puppy school, and puppy play groups. 

Here's a link to an Ian Dunbar book:

http://www.amazon.com/Before-After-Getting-Your-Puppy/dp/1577314557/ref=sr_1_1?s=books&ie=UTF8&qid=1294699516&sr=1-1

Jane/OneBadBoob is an amazing dog trainer, and really recommends Sarah Wilson, My Smart Puppy--

http://www.amazon.com/Before-After-Getting-Your-Puppy/dp/1577314557/ref=sr_1_1?s=books&ie=UTF8&qid=1294699516&sr=1-1 

Just looking at these makes me want a puppy also.

Enjoy!

Kira

Thank you Kira! I will take a look at those. Our breeder recommended "The Essential Miniature Schnauzer." It looks like I have some book shopping... and reading to do! My kids and I are so excited! My husband on the other hand... LOL, not so much!

Kira - I wanted to rescue a dog from the Humane Society! And I also looked for Schnauzer rescues and had a hard time finding any available. My biggest issues are that I need a breed that does not shed (a deal breaker for my husband) and one that does not start out with a ton of bad habits. I don't mind working with a dog, but my husband is only letting us have the dog because I begged and whined and used everything I could think of to get him on board. SO... I am hoping that starting off with a puppy and training, socializing, etc. etc. will make it less stressful (if that is the right word?) for him. And hoping he will fall in love with it too... but of course know better than to get my hopes too high. I still check the humane society's website everyday while I am waiting for my pup and just found a poodle/cocker mix. We may go take a look, just for fun - and then we get to pet all the dogs while we are there - but I really hope I am making a good choice on breed. Maybe I need to PM Jane!