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  #1  
Unread 06-29-2005, 01:00 PM
Lymphedema

I was wondering if anyone was told about Lymphedea. If they could develop this after having a Hysterectomy. I had mine back in Dec. of 1998 and the following July my legs started to swell. I tried for five years to lose weight which is what my doctor tod me was causing my legs to swell. I finally found out I had LE and by waht I have researched this is one of the side effects of my Hysto. I was also told that it is rare to get it from this but since I have had nothing else of any source that was probably it.
Does or has anyone else have or even heard of it.
Cin
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  #2  
Unread 06-29-2005, 08:36 PM
Lymphedema

Hi (((Dama))))

I'm so sorry you're now dealing with this

I must admit that I do not have much knowledge of Lymphedema, but the little research I just did in trying to find information for you showed that, indeed, this would not be frequent side effect from having a hyst: it appears that it is more common after the lymph nodes are removed.

I did find a few references to it though, when I ran a search of the Hyster Sisters web side. I've also found a few links to Lymphedema web sites in our Resources Library.

Hopefully, someone will have some input for you soon
  #3  
Unread 06-29-2005, 11:24 PM
Lymphedema

I have heard of this before. The theories I heard were that because the ovaries are part of our endocrine system removing them (or hysterectomy alone, which can damage them) can throw the delicate balance of all of organs and body functions out of whack.

It really raises the risk of heart disease significantly and swelling legs and ankles can be a symptom. Have you had a good work up from a cardiologist? How about an endocrinologist?
I would look outside the box and find a doctor who thinks outside the box.

Best wishes,
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  #4  
Unread 06-30-2005, 01:02 AM
Lymphedema

Hi. I'm sorry you're dealing with this problem.
You can search for lymphedema on the web and get a list
of physical therapists and or massage therapists in your state that specialize in relieving folks of this problem. Some before and
after pics included.
The worst thing following my hyst was the water in my thighs
and blochy look to once muscular legs. Acupuncture helped some.
Goal was to stimulate the lymph nodes to move fluid from the legs
I'll pray for you. Today, after 4 years of not wearing shorts, I had a day that the legs looked close to normal. I'll give the Lord the credit.
take care.
  #5  
Unread 06-30-2005, 04:37 AM
Lymphedema

thank you all for the replys and the info. Only therpist I have been to was one for my LE , showing me how to wrap and do the massageing. I went for 12 seeeions. My biggest problem I have right nw with my Hubbys insurance is they dont pay for hardly anything because my LE is not cancer related. I havent been on Medicare that long so not sure what they would pick up on. I am suppose to go see a Cardologist but havent yet since my experience with a Orthipedic surgeon I was also suppose to see because of my knee. My doctor told me to go see both. When she had an zray of my knee taken she wrote me a note about possibaly having a bone chip in my knee. When I went to see the O.S. he had an xray taken said I had arthritus bad, put me on Vioxx and that was it. Never said a thing about coming back or anything. Oh he did tell me I had to lose weight I took the Vioxx and didnt feel it was doing anything for me, espically for my knee. So I didnt get the next perp. filled. three days later I saw where they have taken it off the market.
I know I really do have to go see a Cardologist espicaaly since the last time I saw my Dr. two weeks ago she said my heart was skipping a beat.
Cin
  #6  
Unread 06-30-2005, 07:53 AM
Lymphedema

I suffer from Lymphedema. Mine is a result of a DVT shortly after my hysterectomy.

My swelling is greatly reduced with massage and wrapping or wearing my compression stocking. Did your massage therapist show you how to do the massage yourself? I don't go to massage therapy any more, but I continue to do it myself.

If I don't wear my compression stocking, the swelling is extremely noticeable by the end of the day. I know I should wear it every day, but sometimes in this heat and humidity, I have to take it off after only a few hours because it's so bothersome.

If you don't have compression hose, your doctor may want to write a prescription for them. The TED stockings you can over-the-counter aren't good enough for lymphedema. You need stockings that are measured to fit, and in my case they need to be custom made. Even with a prescription my insurance won't cover it, and each stocking (not pair, but each stocking) costs $66. kBut you need a prescription to obtain them, and they need to be replaced every 6 months.

With massage and compression hose or wrapping you should be able to keep the lymphedema under control. The danger with lymphedema is the risk of developing cellulitis. That happened tdo me last Fall and it's something you want to avoid.

So, after all this typing what I want to suggest is:
  • continue massage therapy. You can do this yourself.
  • wrap the leg, or
  • wear compression hose
  • keep your leg(s) elevated when sitting down.

Here's another thread on the subject of lymphedema that you might be interested in.

https://www.hystersisters.com/vb2/sho...hreadid=210210

Let me know if you have any questions.
  #7  
Unread 07-06-2005, 07:38 AM
lymphedemia

I had TAH last year due to stage 1b1 cervical cancer. I had lymph node disection too. I have just heard of lymphedemia since joining this site a couple weeks ago. I think that may be the culprit of my swollen legs, my right leg has been growing steadly over the last month or so. I have a call into my oncologist, I don't know if he is the Dr. I see for this condition, but I am awaiting a reply from his office. Since researching this condition I was under the assumption that secondary lymphedema is associated with lymph node removal or injury to the lymph system. I suppose a hysterectomy alone could cause injury to lymph nodes. I know how bothersome this swelling can be and I wish you luck and relief. I am a little upset that I had to find out about lymphedema here. I don't understand why my oncologist hadn't warned me of the possibility of this condition. Well, thank God I am here and maybe have an answer to my large leg. How long would I have let this leg swell before seeking an answer from a Dr? I am not one to run to the Dr. for every little thing, I am afraid of the Dr. labeling me as one of the "cry wolf" type patients, and not take me seriously when something really happens. I don't know why I feel this way, but I just think Doctors are like that. Anyway, I have learned a lot of valuable information here. Thank you all! I'll keep you posted as to what I find out.
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