Treatment for lymphedema

[mother1991]

I was diagnosed about 8 years lymphedema and lipodema bilateral legs. i have trided twice with bandaging and wrapping of the legs twice and could not continue due to rash and skin irritation. All the materials used were latex free. i am allergic to latex. My legs started swelling again so went back to a lymphedema therapist again and she reviewed my old records and could not help because she even agreed the risk is too much to try wrapping again due to history of skin irritation and rash. She referred me back to see a Lymphedema Specialist agin to see what other alternatives could possibly work. My doctor is already working on the referral to one and will know withion about 2 weeks from insurance. There should be nothing to block because the doctor is contracted provider with my insurance. Also too can get a definitive diagnosis if now my right arm is also lymphedema as well which started swelling a year ago with a weird rash. Had tests and saw rheumatologist not vasculitis but she thought possible lymphedema even though not following the normal pattern of lymphedema. I will also get more information to see if possible the abdominable iissues I have had for years is also connected possible lymphedema of the intestines, even though the only place i know of right now to be able to do specialized tests is Mayo Clinic in Minnisota, not help because I am in California.

My question is has anyone else had trouble with the bandaging and wrapping and having skin issues from it? Both lymphedema therapists I have seen have never seen that type of reaction before and they are not sure either what would help after the swelling is reduced because compression stockings make my chronic nausea and abdominable pain worse and I get sick alot more. If you haver had issues what else was tried that I can look into that and see if possible help for me? Just looking for more information.

[patoco]

Hi Mother

Super welcome to our family here!!!!

Wow...what a plateful to deal with.

I honestly have not heard of the reactions either on bandaging.

Also, I did want to mention there are documented cases of lymphedema presenting as the initial syptom of RA. See if you can access this article:

Lymphedema of the extremities developed as the initial manifestation of rheumatoid arthritis

http://www.john-libbey-eurotext.fr/e-do ... ionPDF.pdf

The article also shows photographs of an unusual rash the patient has. There are other cases as well if you need them for your doc.

On the issue of lymphedema of the intestinal tract, this is commonly referred to as intesetinal lymphangiectasia (IL). It also can be diagnosed through a colonoscopy. This is how they diagnosed mine. A doppler can also show up swelling of the intestines, though the colonoscopy is a better diagnostic tool for it. This might also explain some of your nausea and related issues.

They are not sure when my IL started, but I can tell you, it really has caused all types of digestive issues for me - and I too have terrible nausea. I've been on nausea pills and they helped until about a week ago...ugh....here I go again.

It sounds like you are allergic to something in the materials of the compression garments. Have you tried low-stretch bandages? You would have to be really careful with these to make sure they are latex free. There is a brand made by a company called Comprilan whos bandages are 100% cotton, no latex.

You might try a good cotton type underwrapping before putting the compression bandage on. These can be purchased at most lymphedema supply sites. Also, there is a new type of device call a Farrow wrap.

it is made by Farrow Medical out of Texas and here is a page of info:

http://farrowmedical.com/node/177

I'm not sure if it is hypo-allergenic, but a company called CircAid also sells a similar product that is hypo-allergenic:

http://www.circaid.com/Pages/Products/classicflex.html

BTW..are you having fluid retention in the abdomen or lung cavity too? This is not terribly uncommon with IL. I would be sure to at least have them check that. better to be safe then sorry.

Mother, I really hope any of these ideas can help. To me, it sounds like there is something medically going on with you that they just haven't put their fingers on yet. Though it can be frustrating as all get out (been there done that), I would allow the doctors to run any further tests they might deem necessary. At least that way you might be able to get some more concrete ideas.

My very very best to you!

Pat

[mother1991]

All the bandaging and wrappings were all latex free and there was a cooton underlay with wrapping and bandaging. I know have to go see a doctor that specvializes in Lymphedema either Dr Stanley Rockson at Stanford or Dr Emily Iker in Santa Monica. These are the only two Mds that specialize in the treatment of lymphedema. My insurance is crap but also any requests I make will be stonwalled because they got in trouble with my proof by the State of California and it ran in the locl paper and couple other newspapers in California as well. The rheumatologist I saw for the unusal rash and swelling of right arm with it being very red like a sunburn to blue sort of purple and at times the swelling in fingers is twice the normal size. Only saw me because interested in Vitamin C level in blood come back 0.0. She said not vasculitis but thought lymphedema but not acting like lymphedema. May be cold aglutinin or cryoglobulinemia both conditions that are sort of similar but morte reaction to cold but can also react to heat in later stages. I too take meds for nausea both zofran and promethazine and also ginger too. both are taken daily to lessen the nausea. Zofran is expensive about 2k for a month supply but glad insurance is at least covering that. i have a good primary care MD that gets the referral i need when asked and will also give specific names and no trouble there. he is learning a ton from me. I know Mayo clinic in Minnisota has the tests to see about the intestinal lymphedema and there may be a way to get the specialized tests near me. i also do not present in the matter most usually do with different things and tends to be a bit harder to pinpoint the cause since the symptoms are not the norm. My doctor is also working on trying to get me in the undiagnosed program with the NIH National institute of health on the east Coast. many differnt specialist working together sort like a doctor house but all specialists working together. keep you posted.

[patoco]

Good to hear back from you

Both Dr. Rockson and Dr. Iker are great doctors - but there are a number other ones as well. Our Registry of Lymphedema Doctors gives a partial listing.

The NIH actually may turn out to be a blessing in disguise - and perhaps they will show enough interest and determination to find out what exactly is going on.

Keep us posted

Pat

[mother1991]

Hey update. I about fell out of my chair this afternoon. My head is still realing from unbelief. My insurance approved for me to see Dr Rockson at Stanford. My insurance is notorous for denying on the grounds that they do not contract with my insurance and also that the amount offered to be paid is not approved by Stanford in reality it really is not but the jargon and lingo thrown around is BS. Well the appointment is for July 20 at 11 am the first appointment for new patients, but am on the cancellation list. I am just glad the approval happened, I guess too it helped that I got ahold of my local Assemblyman for the state of California which has been involved in my case. Turns out too at the federal level there is a bill being worked on for lymphedema therapy Federal Lymphedema Bill I believe is supposed to be voted on in May unless it has been been moved to different time on vote. Hopefully this will make getting treatment easier with less barriars. my advice too is anyone whom is haviong a difficult time getting insurance to approve authorization for different treatments and to see a physician specilaizing in Lymphedema find the state legislator for your district and have them intervene and make calls that can possibly help with approval. Another option is to also call your state insurance commision and see hat can be done there as well.

Thanks all for listening and will post updates when I know more.

[patoco]

Wow - this really is great to hear and super congrats to you

It goes to show that we have to stop accepting automatically these denials by the insurance companies and need to do battle with them.

I'm excited and can't wait to hear how it goes with Dr. Rockson.

I remember back in 2006 when I had been in the hospital here in Atlanta for almost two months.

Dr. Paula Stewart, a wonderful LE doc who is head of a rehab hospital in Birmingham wanted me to come over there.

Naturally, my insurance (BCBS at the time) denied it. By the time we were all done, they not only approved it, but authorized a private ambulance to take me from the hospital here all the way to Birmingham.

It really pays to stick to your guns.

Pat

[mother1991]

Just a quick update. Still awaiting the July 20th appt with Dr Rockson. Got back my labs and still very deficient in Vitamin C, my D came up some but still not in target rate, K deficiency is better labs show in normal range, B12 still low, The surpeising one that thought would have gone up is the B3 (Niacin came back none detected. Not a goosd sign. But one good thing is I spoke with a researcher in micronutrients and she was very interested in my case. It is rare for a person to be deficient in B3(Niacin) and the Vitamin C on top of it. She will be presenting my history and symptoms with other researchers and come up with other areas to investigate further. Turns out too the unexplained rash, swelling and colorization of right arm from bright red sunburn and burning sensation to sometimes being cyanotic can be part off the symptoms of Niacin deficiency also called pellegra. This can also cause alot of other gastrointestinal symptoms from pain, nausea, tenderness, and malabsortion issues. I also am getting the referral to bariatric and metablic department at UCLA medical center. The swelling in legs is worse and not helping much with elevation above the heart and in the last two weeks swelling in feet is bad, even got to point can not fit in my own shoes and have to wear my sons flip flops. Looking for shoe in interum to wear until find out what treatments I can do. Thanks all for still listening will keep posted with more information,

[patoco]

Hey Mother

Thanks so much for the update. i really look forward to hearing about your visit with Dr. Rockson.

From what I hear about him, you won't be disappointed. I hope too that they can find a solution for the vitamin/mineral deficiencies.

It's interesting that in my family (a number of lymphedema patients), many of them also have problems with vitamin B deficiencies. My older sister has to take the vitamin B shots.

Keep in touch

Pat

[mother1991]

The shots are more than likely B12 injections. They do make intramuscular for any vitamin needed as well as intravenous. It was one of those things that one doctor suggested a Niacin deficiency and when labs done it was very low. Then recently none deteded and the assay used is the more senitive of the two. Can always have all your B vitamins checked in labs as well A, C,D, E, K and also the micronutrients as well. Turns out that if have a deficiency in one B vitamin then more than likely there are other B vitamin deficiencies too. My case was spoken about my situation with a group of researches at Oregon State and even they baffled. Not too many have a Niacin deficiency but for those with malabsorbtive issues it is a good chance that it could happen since the bosy has a hard time absorbing the vitamins and other micronutrients from the food eaten. I still can wait to see Dr Rockson and wish the appt was sooner instead of later but at least have the appt. It is sort of off that the only peer articles with lymphedema and hypovitaminosis(vitamin deficiencies were done in the 70s) would really like to see it studied more with the advancment in medicat technology and knowledge. I still think there is a link but can not say for sure. Have agood day and best wshed to you and your family

[patoco]

Hi Mother

This is really getting interesting for me. Especially since my older sister who has LE also has the vitamin deficiencies and my daughter, while she does not have LE, she does carry the LE gene. It looks more and more to me that there may indeed be some type of link.

There is always and answer, it's just a matter of digging deep enough to find it.

BTW... ...my sisters all live in Oregon as I did for twenty years. While in high school, I sure spent a lot of time at what was then the University of Oregon Medical School (Oregon Health Sciences University).

Pat

[mother1991]

I have been given a referral to see a bariatric and metabolism department at UCLA Medical Center still trying to get a date but will plod. I have even made an appointment on my own to see an RN whom is Registered Diatician and Nutritionist locally. Tat appointment is the 25th. I thought why not try another source for possible more information and try to tweak diet to see if it helps any. I have already tweaked alot but maybe not seeing something in another light that may be helpful. Never know knowledge comes in many forms and resources sometimes from those not thought relevant,

I forgot to mention the department at oregon state is linus paulding institute. Here is the website they have on vitamins and micronutrients.

Here is where you can find articles from past newsletters and future ones to be mailed or seen online including the newest.
http://lpi.oregonstate.edu/nswltrmain.html

Here is link for the podcasts on different subects from leaders in each field.
http://lpi.oregonstate.edu/podcast/index.html

Here is the main page to website, on the left can read more in depth on different vitamins, minerals, micronutrients ect, symptoms of deficiencies, and good over information that is easy to read but very detailed orientated. Maybe this can help others in lymphedema people too.

http://lpi.oregonstate.edu/infocenter/

[mother1991]

Looks like will have an appointment at UCLA soon and my appt with DR Roxson is in 10 days. One step at time and one moment at a time. I did come across this today and wanted to share I found it very intersting

Vitamin D and the vitamin D receptor are critical for control of the innate immune response to colonic injury
http://www.biomedcentral.com/1471-2172/8/5