Desperate for some support and answers

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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Desperate for some support and answers

Postby bklsmom » Tue Apr 24, 2007 11:14 pm

Hello everyone, it's been a very long time since I've been on here. I guess I thought I didn't need the support any longer and that I had a hold of my leg lymphedema. Boy was I wrong, :oops: Just a quick run down of my lymphedema then I'll get into what has been going on with me. I have secondary lymphedema due to cervical cancer with lymph node disection in June of 2004. My right leg seems to be more grossly affected than my left, although the left leg does swell. Initial therapy for my lymphedema was in Sept. of 2005. At that time I had lymphedema from the thigh to the ankle in both legs with the right largest of the two. My therapist used the vodder method le massage and wrapped only the lower leg from the knee down. That seemed to work at ridding the whole leg of excess fluid. I was fitted with a jobst compression garment for each leg. For a while that was working fine. As time went on, I became frustrated with having to constantly be pulling up these garments. Every 5 minutes they were down to my ankle. Frustration took over, I convinced myself that I didn't need to wear these darn things, I had controll of this le and I was going to be "the one" who's le would never return. Well guess who is back with her tail between her legs, so to speak :oops: Can you guess who still has le and appears to be much worse :cry: Now to my new set of complications and questions. First, I have tried to wrap my legs at bedtime as I was taught from the foot to the knee...well that works fine on my left leg, but on my right leg it only seems to remove the fluid from that point down, My thigh is always huge. When I do wear the jobst garment during the day it seems to have no affect on my right leg especially the thigh. Could this stop working? Do I now need to wrap all the way up my leg? My right thigh measures anywhere from 4 - 8 inches larger than my left leg, is that a lot? The calfs are only about 1-2 inch difference. In the past month or so I have been having a lot of burning sensation and numbness in my right thigh, is this normal in le people? I have also been awaken at night with pain in my hip down into my thigh, sometimes I even cry out loud during my sleep because of the pain. Last week at my GYN/ONC check up, I mentioned the le worsening and the new sensations I've been feeling and asked if it could be my le causing the sensations. He said he never heard of le causing pain. I go tomorrow for a bone scan that he has ordered, I suppose to rule out a matastise of my cancer to the bone? Have any of you had any of these kinds of sensations relating to le. I also have intense itching of the skin and I attest that to the stretching of the skin. I have researched different garment options and I seem to want to try the ready fit 2000 from circaid. I love the idea of the velcro. Would be nice to adjust as the leg goes up and down in size. Does anyone wear this. Do you think I can still get away with the lower leg garment? How do I know for sure? Also, how and where do I get these? I printed out some papers and took to my dr which he filled out so I can submit them to see if my insurance will cover the cost. I just don't know how to go about ordering any of these things. Last time it was part of my therapy. I cannot afford to go that route again...My therapy was every day mon - fri for a month. I assumed my insurance was covering it since the hospital where I saw the therapist never asked for a co pay. After my treatments were over I get a bill for $250 per week!! My copay is $50.00 for a specialist and my insurance company made me pay this per day. I cannot do that again. When I talked with my primary care dr about my le, he said he didn't know a thing about it and he wanted me to direct all of this through my gyn/onc, now he is sending me for the bone scan, saying le does not cause these symptoms. Someone PLEASE help me :? I am so confussed and I cannot stand these legs any longer. I feel like I could just crawl up in a corner and cry. My eldest daughter has called me lazy and says my problem is that I am no longer active. I can't seem to make her understand that I'm not active because of my legs hurting and feeling heavy and hard to move, does any of this make any sense to any of you? :?: I feel desperate :x Thanks for listening to me whine for a while :!:
a leg le sister,
Nancy
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Postby patoco » Wed Apr 25, 2007 1:57 am

Hi Nancy :)

First, leg lymphedema can be excruciating painful. I have lots of pain involving the right hip and pain hroughout the legs. But, since you have a history of cancer it is absolutely important to rule out the possibility of bone cancer. My doctors did that with me and I'm glad that your doctor is doing so.

Let your doctor know too about the LE related pain. If you thigh is that much larger, it could well be contribting greatly to that pain.

I hear you about keeping the stockings up...real pain in the ****

If you have been wrapping only to the knee, it could also have caused a fluid backup if the inguinal or abdominal nodes were the ones affected from the cancer. So, you may well have to or need to wrap the entire leg.

It is important also for you to be using a lotion on the skin, especially as you describe the itching. Eucerin is a gret skin cream and is recommended by many therapists and patients. This should help on that. Be sure to lotion up everyday after a bath/shower.

There is a new product that many many people have found helpful

Farrow Wrap

https://farrowmedical.com/farrowwrap-overview

Click on the little screen when the page comes up.

There are also full leg garments with velcro and zippers:

Solaris
http://www.solaris-tribute.com/lymphede ... .html#Legg

JoviPak
http://www.jovipak.com/made.shtml

CirAid Medical
http://www.lymphedema.biz/index.htm

http://www.lymphedema.biz/products/readyfitline.htm

To mention a few. But, these will require a prescriptionso I'm afraid the doc is going to have to be involved.

What you might do is call your therapist, explain the situation. See if she will help measure and walk you through the paper work. She probably will as most therapists I know are quite helpful in that situation.

Steve Norton of the Norton School of Lymphedema Therapy has a prodcuts company as well.

Lymphedema Products

http://www.lymphedemaproducts.com/

http://www.lymphedemaproducts.com/produ ... tions.html

Hopes this can help!!!!!!!

Let us know how the hip/bone tests go, or if you have any questions on the above.

Pat O
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Pain

Postby suzeeq » Wed Apr 25, 2007 1:44 pm

Hi bklsmom, I think we all know what you are feeling. Yes, you do have pain with lymphedema. But I agree with Pat - with your history you do need further testing. I have numbness in my lateral calf, due to the swelling and compression of the nerves. I at times get sharp stabbing pains to the top of my foot, other times it is a tingling sensation. Again all due to nerve compression. And yes, your hose can wear out and not be effecive. In fact, I am bandaging about 20 hours a day now while waiting on new hose. I have LE in my left leg and now wear a one legged panty hose which works fine. It never slides down. I was wearing thigh high for over a year, but the LE spread to my buttock, so now I need compression there as well. I started out when first diagnosed with just knee highs, but then things change, the edema went higher and I went into the thigh highs., then the panty hose, but watch your body, you have to adjust to the changes. And I agree with Pat again that you need to bandage the entire leg now. Good luck with ordering new garments. I'm sure your LE therapist can assist you.. Do you do manual lymph drainage on yourself? I'm sorry about your daughter's comment. There are alot of judgemental people out there and a lack of knowledge. Your daughter doesn't know better, but your doctor should. All he needs to do is a little research and listen to his patient. Take care. Susan
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Postby bklsmom » Wed Apr 25, 2007 7:21 pm

Thanks for the comments. I had my bone scan today. I'm sure that my bones are fine. I don't know why no one will believe me that the pain I feel is my le. Why do Dr's not want to admit that le can be painful? Oh brother...Thank you for the info on different kinds of garments. I called a lymphedema clinic today by my house and they really wanted to help me with some therapy to give me some relief with this swelling, very nice man I talked with today. He called back to inform me that my insurance company will not cover me there. I called my insurance company and they want me to go to the clinic in Clearwater whice is about 40 miles from my house, one way. I don't understand why insurance companies can't work better with their patients!!! Ok so I'm complaining again. Well, I guess therapy is out of the question for now. Can't afford the gas every day, and I still owe money I'm paying on from my last round of therapy. So where can I get help in ordering my garments, since I have no therapist to go to? Any suggestions?
I do try to do MLD myself, but it is very hard to do my legs myself. I try to wrap my legs, but I can't seem to get it right and the bandages I have are about worn out. I have no idea where to purchase them. I went to the drug store, they only have ace bandages and the ones I have are really long and only seem to have a little bit of stretch to them. Where do I buy bandages and are they expensive? Trust me, my insurance company probably won't pay for them either. I really want to be diligent about taking care of my legs, but it is all so pricy and I don't know where to get these items. I guess I had a bad therapist the first time around... I learned more on here than he ever told me. He never told me I should be wraping at night, never told me about shaving legs or bug bites nothing. How often should I be getting new garments and wraps? I have my original wraps from my therapy and original compression garments they are 11/2 year old.
Thanks again,
Nancy
bklsmom
 
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Location: FLORIDA

needing help

Postby suzeeq » Wed Apr 25, 2007 11:11 pm

Hi Nancy, I know all about the problems with insurance companies. They can really be a pain! Just a suggestion - can you maybe visit the clinic that is 40 miles away and covered by insurance for just one time? You could get a review on self manual lymph drainage, get the actual treatment while you're there, get new bandages and order new garments. You should probably check with them first and make sure that they can do all of this. I have been told that you can buy garments online. As for the bandages, if the clinic doesn't have them, then maybe you could try a medical supply company. Or call your insurance company and ask them where should you go for supplies and garments that will be covered by them. It is frustrating, I know. As for how long the garments last - I think I read that the compression hose should last 4-6 months. Mine are 7 months old and I can tell that I need new ones. I'm not sure how long the bandages last. I am using my original ones that I got last October - have replaced the artiflex twice, but the short stretch wraps still seem to be effective.I get much better control with the bandages on as opposed to the hose. If you get to go to the clinic, have them watch you bandage so that they can give you suggestions on the correct technique. I hope some of this helps. Susan
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Postby lazyleftleg » Fri May 04, 2007 1:12 pm

i get my bandaging supplies from bandagesplus.com
don't know how reasonable the pricing is compared to others, but they are always helpful when i call and shipping is fast.
i wish you so much luck and patience dealing with your le. i know it can be frustrating. if you are able to go see the therapist make sure they show you some simple exercise techniques to do each day to help also.
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