Therapy has been a joke

I was finally diagnosed with lymphedema in my right leg in March and since then I have been going to therapy for it.  He measures me every time and then wraps me up like a mummy and then I take 4 steps and the whole thing falls down my leg.  Mine is in my thigh, where it is the most severe, which makes me walk funny, and throws my hips out of place all the time.  The wrapping can only help if I can function with it on and they don't seem to have any solution except to wrap it up let it fall down and then start over. 

My swelling in my thigh is like holding a balloon in between my legs at all times.  I do take a diuretic and some days it helps and others it does not.  I don't eat salt and I am basically on 30-40 carbs per day.  I am hoping that surgery will help and this new way of life will be gone.

When this started showing up I went to several doctors - try 15 - before I was finally diagnosed and it just grew and grew.  I kept asking "is this lymphedema?"  and they would all say no lets get a biopsy. Thank god for Dr. Berntsen who said you can not biopsy lymphedema.  I can only imagine if it would have got infected.  I feel like I saw some pretty amazing specialists and even they did not know what this was..... why is that?  When I go to the Lymphedema Network many many people are living with this, you would think one of those Physician's would know, 3 internal specialists had no idea.

I am switching therapists now and I am hoping for some sort of help, as it is continuing to get worse and worse.  I hope they have a better solution to wrapping my leg, I know I need compression but so far we have not accomplished that at all.  They wrap me up from toe to hip and within an hour the hip to knee section slips down to the top of my knee which is quite painful.  I have read about custom ordering a garment however that is No where near my price range.  $3500 WTH is that?

I hope it will get better and can't wait for surgery and then maybe we can get into a garment soon that works.
JJ

JJ,

My heart goes out to you. I have it in my left lower leg. They say it's in my right,but not as bad. I'm going now to have mind wrap and getting compression stockings next week. I was told if people have a hard time getting the stockings there is help out there.

What fluid pills are you taking? What surgery are you having? This is ALL new to me.

Thanks,
Shirley

Shirley

I am having the Duodenal Switch August 19th!

Today is a really bad day for swelling, as it is about 103 and humid-- so I am really swollen tonight.

I was taking lasix- which did reduce my swelling everywhere but my thigh and it reduces potassium, so now I take triamterene, which works good on my thigh but no where else.

Yes I have lower leg compression stockings but I refuse to pay that large amount  for special stockings to go to my thigh- especially when hopefully the surgery will reduce the size of my leg.  Everything they have tried has not offered much assistance.  Tomorrow is a new day and a new therapist and hopefully we will start to see some improvement. Maybe  they will be better at wrapping than the other place.  So far no luck!  Wishful thinking!
JJ

JJ,

Thanks for sharing this information with me. Please let me know what happens today.

I had lap band in 4/07 have lost total about 130. Sure wish you a lot of luck With the Duodenal Switch I do believe what every surgery you decide you will do GREAT!!!!!!!!!!!!

Shirley

OK so far so good-- New Therapist-- much better outcomes, she has ideas, and plans and already has given me more info then the old one--

Today is much better but I am still wrapped up-- it slipped a little but not like before.  Going to see her once a wee****il ????? We will go from there, I am hopeful!

When I had to have my thighs wrapped we used that foam stuff and to keep it up we had to crisscross the foam first then crisscross the first layer of ace like wrap. I had to keep my wraps on for 2 to 3 days and work on my feet for 12hr.s as a nurse so by the end of the third day mine had slipped and got tight around my ankles. Thank God, I am so much better after RNY 20 mo.s ago. I still have some swelling in my thighs but can wear compression pantihose .

JJ,

So glad to hear today was so much better.I live in WV and there are sure not many people to go to here.The person I'm going to seems to be very good, so guess I am blessed.

Shirley

I know how you feel. I have had lymphedema in both of my legs for years now. Not many people, Dr.s included, understand it. I believe my lymphedema started when I was a kid when my aunt noticed my feet swelling. The Dr.s I went to just told me to lose weight. I now have it in both legs, and have started getting it im both arms too. I have had a panniculectomy (removal of my large hanging belly fat) last year. My surgeon told me my lymphedema may get worse. It most certainly did! I am not saying your surgery may make yours worse or not. That is something you should ask your surgeon. As far as the wrapping goes, what more can I say, but UGH!!!!! I tried the leg wrapping last year and mine kept sliding off too. My Dr. said to try wearing a garter belt. I have yet to do it.

Insurance may or may not cover your bandages. It depends on where you go for treatment. I have lymphedema specialists close by, but my insurance won't cover the cost of the wraps. There is one place that considers it "in patient" and my insurance will cover the cost if I go to this particular place. However, I am number 28 on their waiting list!!!!!

I found out that the summer heat makes lymphedema worse and to stay in air conditioned places.

I am having trouble handling my lymphedema emotionally. I am angry, depressed, have crying spells, etc. I will have to be wrapped on my entire legs, both arms, possibly hands too, and wear a binder on my abdomen. Talk about being wrapped like a mummy! And all these wraps in this heat!!!!!

Sorry for the long reply. I just wanted you to know that I understand completely what you are going through. I am trying to get on Dr. OZ, or at least have him discuss lymphedema to spread awareness of it. I am getting tired of being made fun of, or stared at like a freak by ignorant kids, (and some adults) I swear, I want to wear a T-shirt that says,"  I am not fat, I have lymphedema, so BITE ME!!!"

Seriously ask around about where you may be able to go so your insurance will cover the high cost. Just be aware that there also may be a lengthy waiting list too. ((((((hugs))))))

It took a very long time for me to be diagnosed.  It finally took me seeing a vascular surgeon for him to recognize the problem. My primary physician was telling me to elevate and loose weight.

I had RNY 2 1/2 years ago and that helped a lot!  I started with one pair of the custom compression stocking in September of 2010 and in December of 2010 I got a couple new pairs that were smaller because the first pair worked so well that it reduced the swelling enough. I knew then that I could get a couple pairs of the smaller size and then start a new pair every three months.  The custom ones are wonderful because I have one leg larger than the other so the generic over the counter ones were not going to cut it. I tried one pair over the counter and they were horrible!! They cut into the back of my knees terribly.

I had total knee replacement surgery March 28th of 2011 and was unable to wear my stockings for a while and now summer is here and I find it even more difficult but... I do wear them to sleep and that helps a lot!  I did have a slight complication after surgery that was due to bruising from them holding onto my calf so tight during the surgery and the lymphedema. A bit of a cellulitis from the blood that pooled in the tissue under the skin.  I still have a brown stain there that is very slowly fading.  I imagine I will have another one on the left leg when I have the left total knee on August 8th but it is worth it for me. RNY made it possible to finally get the knees replaced so I can walk more and that helps with the swelling too!

I hope you can get some custom stockings! That would be great! I know they do custom full stockings for men and women.  Most of the time the insurance covers them.  My stockings were $220 per leg! Thankfully they were covered under durable medical equipment.

Best of everything to you! I hope you find the perfect solution to help you!