LE and surgery

lauralu

Got measured for my 1st set of arm sleeves yesterday. I am being told I must wear them all day every day. Forgive me is I sound naive. I have had such a problem with proper diagnoses that all I am questioning almost everything I have done or heard.

I have tunctal lympheda as well my Dr did not diagnose it but I am certain that is the case. I can hardly sit at night I am so uncomfortable. My chest just aches like crazy. I did get some exercises fro a physiotherapist 2years ago. I honestly do not know which ones I should do. She did not know much about LE.when I do upper body and arm exercises I am in total agony

 I was being treated for back problems and tightness.  I developed the tight chest and trunk shortly after my breast implants were placed. I would guess that  TLE would cause back problems as well??

My waist has totally disappeared. When I look at getting camisoles with a compression I cannot get the proper size in proportion for waist. They just hang off the top or are way too tight on the middle. I got a yummy tummy about a year ago an it just buckle around the middle.it is so tight.

I have not posted this here but I need to see if anyone can help me get some answers. I am going to see a PS about having my implants removed. Because I am having so much trouble with LE and none of the Dr's seem to acknowledge it all the much. Surgery could be a major issue not just the blood work, IV's etc. I do not know what to tell them with out POing someone off. They hate patients that seem to know it all.

I definately know that I have gotten more good information from this forum. My Dr's seem to be so uninformed and it scares me to death..

Binney I am so thankful for all the info that you have posted. I need to be totally informed so that I can communicate properly

I see my PS on the 26 if anyone has any ideas as to what I should ask could you please let me know

Thanks 

Laura

AnneW

Check out the Reconstruction: Charleston thread. There's a lady there who just had her implants removed by Dr. Marga Massey (no further recon)--she has LE, and Dr. Massey probably knows  more about LE than any plastic surgeon out there. She took every extra step to ensure that the patient had no ill effects from the surgery.

Edited for spelling

Binney4

Laura, what a struggle you've had with this! I'm so sorry.

Am I understanding that you have both arm and truncal LE? Have you been through a Therapy Intensive at all (daily Manual Lymph Drainage massage, wrapping, and specific exercises)? 

If not, you might want to try that before surgery, as breast and back LE can definitely cause tightness, and proper therapy might be enough to decrease the swelling and loosen up the area, as well as improving your range of motion (not to mention your general well-being!)

If you need a good therapist, here's information about how to find one near you, what questions to ask, and how to judge proper protocol:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Before any surgery in an area with lymphedema it would be really helpful if the LE were as well-controlled as it could be -- that would greatly reduce the risk of complications, especially infection and wound healing. So again, even if you plan to go ahead with the surgery shortly, careful LE therapy will be important. If you have a competent LE therapist, you can request your PS to consult with her/him as well.

Here's a section on surgery when there's LE present:
http://www.stepup-speakout.org/Medical_Care.htm#

And here's information written by a doctor to help other doctors understand and deal with LE:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
You might want to copy it for your doctors and present it with a confident smile -- and maybe a plate of home-made brownies!

As Anne suggests, Dr. Marga Massey has been fully trained as a LE therapist and is quite thorough about preparing her patients prior to surgery. From what I've seen of her work, she will insist on good therapy before surgery and following as well. Should you decide to go with her (and assuming you can get your insurance company to agree) she may be able to suggest a therapist in your area. She's been known to call therapists and interview them on behalf of her patients before surgery and set up with them a schedule for treatment. So certainly that would be a comforting choice. But the good news is, with some care and preparation you can do well with your own local resources, as long as you can get their cooperation in working with you on this.

This is already long, and I'm sorry, but I just have to add that I can taste your frustration and so hope we'll all be able to help you feel less alone and less stressed. Please tell us how we can help.

Very gentle hugs,
Binney

lauralu

Thanks again Binney. I am spending lots of time collecting some information and material I defiantly want to check out the LE decompression available here. I went there about three years ago and the therapist said she did not notice any swelling.. My implants were so tight at that time I could hardly move. I am trying the therapy at the hospital. I do not know exactly what they do.I am waiting fot my referral to go through...

Hugs

Laura