Hello - lots of questions

[rustic]

Hi Everyone

I am new to the forum and really joined to get some help and information from those with experience first hand.I am just in the middle of my bandaging and MLD massage. The first question is does anyone get a tingle down their leg / arm from the massage? If I touch my neck or back of my head I can feel a tingle down my left leg, its very strange?

I also wondered how much rebound people get after the bandages come off? I seem to get it really bad in my calf and it is not making as much difference as the lymphedema nurse would like even with heavy foam underneath. I walk everyday with it on. Yesterday I walked for two hours but this does not seem to help any.
I had a lymphoscintigraphy last month and it showed only one channel in the calf and no channels at all in the thigh - I wondered what others lymphoscintigraphy showed as the report says I have no channels in the thigh but it is not getting significantly bigger so the lyphedema nurse says their must be some as the fluid is getting out somehow?

I also have lots of questions on compression pumps / lasers etc but will post later.

I was looking through the posts and noticed that some had a good result swimming with reducing the swelling? Is that the case? I was swimming twice a week for about two months before the bandaging but it did not help the swelling go down at all?

Glad to be aboard

[patoco]

Hi Rustic

Super welcome to the famly here.

LOL..lots of really good questions too!

Most of us get immediate worsening of the swelling without our compression bandages and/or garments on. I sure do.

I have had several lymphoscintigraphy tests done. The first one done way back in the 60's (lymphangiogram back then) showed that I am missing significant inguinal lymph nodes. With me that has been made even worse as a number of years ago some of the only ones I had became malignant.

A more recent one showed the lymph system on the right chest side has basically shut down and has the thoracic duct.
We believe these two things happened as a response to chemo therapy I had.

BTW, the heavy foam underneath may be good to at least try just in case it might help.

Swimming is the absolute best exercise for lymphers. The gentle pressure of the water against the legs acts much like decongestive massage therapy and helps move a significant amount of fluid from the limbs. LOL...I tell my jock friends that I may not be able to catch them in a road race - but I'll wipe them out in a swimming competition

Keep up on the exercises too, not only will they help the LE (lymphedema), but they are great for over all body health too!

As away on the questions, that's why were here

Pat

[rustic]

Hi Pat

Thanks for your reply. I always wear my compression stocking I have a Grade three thigh length mediven - but as soon as the heavy bandages are off even with the stocking on all the time I get rebound into my calf? Is that normal? I am wondering if it related to the venous issue rather then the lymphedema.

Also you mentioned swimming removes a lot of fluid from the leg I was doing 30 lengths in 35 minutes and had no reduction in my swelling at all in fact I felt it was slightly worse afterwards? Did you see a significant reduction after swimming just to the naked eye?

K

[patoco]

Hi again

That rebound in your ankle could well be a combination of the venous problems in conjunction with the lymphatic issues. I have a relative that deals with that as well.

He actually comes from a family of hereditary lymphedema, but did not show any signs of it until a massive venous emergency in his leg. Then boom, the LE started aggressively.

I use to see a dramatic decrease in swelling from swimming. But, I haven't done any swimming since my whole chest/abdomen issue.

30 laps in 35 minutes is some serious swimming. I would ask the LE therapist about this too and see if they can think of a reason for the lack of swelling decrease. Is there any chance of getting a chest/ab lymphoscintigraphy test?

Pat

[rustic]

Hi Pat

I have had two CT scans so hopefully they would show any issue with the chest abdomen? There was certainly no issue on the right side in the lymphoscintigraphy and there is no history of lymphodema in the family. I also had an asthma assessment today and my peak flow was better than average and they told me to drop down on my medication, probably due to the amount of walking, swimming I have been doing to try and help. I have mentioned to the lymphedema nurse about the swimming not helping and also I am walking 10 000 steps a day which is just under two hours at a good pace with compression on but it is not helping reduce the limb either, she is baffled. She has patiets that run and walk alot and there limbs are down loads and they dont have bandaging unless a flare up just wear there compression everyday to maintain the limb size. I had my leg bandaged again today with the foam underneath and I get it re done on Friday for the weekend, she took it off on Friday and I have walked 10000 steps sat sun mon and this morning, slept with the compression stocking on and when she measured it today it was a cm bigger all over!!!!!!! I was hoping some of the people on this forum would share there experience with exercise and lymphodema - I just dont get it. The only thing I can think is the venous issue is not resolved. I lost the tingling feeling in my leg I was asking about until the Massage was done again today and now when I touch my neck it is back again - my lymphedema nurse thinks it could be my lymphatics switching on from the massage but I was interested to know if anyone else had the same thing.
I also wondered if it was because the fluid is still so fibrotic exercise does not help, my leg has got softer though so the lymphadema nurse assures me the fluid is getting out, my butt is very swollen on that side still though, but they cant bandage there..


I was going to buy a compression pump but I am not insured and it was £4000. I also would like to try the laser but that is also expensive. I would like to hire one and try them.


Im not sure how to get this article on line but if you copy this link into the internet it will come up with the article - its very interesting and I think it is exactly what has happened to me... if you can post for others to read that would be great - anyone with lower body swelling - usually starts in left leg. May Thurners is extremely underdiagnosed...I have never had a clot just swelling
http://www.jvascsurg.org/article/S0741-5214(01)01638-X/fulltext?articleId=S0001-2998%2804%2900092-3&articleTitle=Letter+from+the+editors&citedBy=false&isTabularSearchRequestOnSearchResultPage=no&medlinePmidWithoutMDLNPrefix=&overridingDateRestriction=&related=true&restrictdesc_author=&restrictDescription=&restrictterm_author=&search=&search_area=platform&search_articletype=&search_currenturl=http%3A%2F%2Fwww.journals.elsevierhealth.com%2Fperiodicals%2Fysnuc%2Farticle%2FPIIS0001299804000923%2Frelated&search_datecombo=&search_dateradio=combo&search_doi=&search_federated=no&search_hits=4084&search_id=&search_issue=&search_issue_pii=&search_language=&search_medline=no&search_monthendcombo=&search_monthstartcombo=&search_operator1=&search_operator2=&search_OrderBy=descending&search_preview=no&search_query=Related+to%3A+Letter+from+the+editors&search_reqcount=20&search_reqfirst=1&search_sort=relevance&search_source=All+Periodicals&search_startpage=&search_tabularSearchValue=&search_text1=&search_text2=&search_text3=&search_text4=&search_volume=&search_within1=&search_within2=&search_within3=&search_wordsexactly=no&search_yearend=&search_yearstart=&searchDisciplineField=all&terms1=&terms2=&terms3=

K

[blubrdfrend]

Welcome Rustic, You might want to give some thought to the compression pump. I used one years ago and decided to stop using it. There is a possibility that it can cause problems. The compression pump will get the fluid out of the leg or arm but it can push the fluid into the tissues where there are no vessels. I found that about 2 hours after using the pump my leg was back like it was when I started. I am not sure now if my leg just became worse over time or if the pump caused problems.

[rustic]

thank you

Do you have any experience with the laser?

I have also read a lot about horse chestnut - anyone tried it? Im a bit scared as there doesnt seem to be any proof it does help and also i worry it damages elsewhere