Massive Lymphedema Lump On My Leg...Help!

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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Re: Massive Lymphedema Lump On My Leg...Help!

Postby blubrdfrend » Sun Jun 19, 2011 10:14 pm

Brenda, I had surgery years ago at UCLA. There was no physician in the Dallas Texas area that could help me. I returned to Texas shortly after surgery. Some of the stitches pulled out. My family physician did not want to replace the stitches. The areas where the stitches stayed in place left a nice thin scar. The area of skin where the stitches pulled out left a wide uneven scar. It took longer to heal but it finally did. After the stitches were removed I was able to walk and the leg could bear weight even though the skin on part of the leg was still open. I knew very little about infection at the time. I would be much more careful now. I was young at the time. You know, indestructible. You and your husband may want to check with the SS office about disability. We will be praying for you.
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby patoco » Mon Jun 20, 2011 8:32 am

Hey Brenda

I soooooooooo agree with Betty, you and/or your hubby really needs to contact SS and inquire. If necessary hire a firm to get the ball rolling. It usually costs about one month of ss benefits to pay for the legal firm. The company I work for hires a company to do only that for employees who become disabled.

I was really shocked. They applied for my ss and had it approved in a litle less then one month. It's well worth a try.

LOL....I hear you Betty about being young and indestructible. I also wish I knew as much as I did when I was young. :lol:

Pat
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby brendaluvsgarth » Mon Jun 20, 2011 4:16 pm

Thanks for the ideas, we applied last month for ss. I mean seriously, how could this not be considered disabled?
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby brendaluvsgarth » Sun Dec 18, 2011 10:58 am

OK----TIME FOR AN UPDATE


Here we sit, almost 7 months post op, and his surgical wound still has not fully closed. The wound has gone from probably 8 inches long to 1 and a half and at some points it was8-10 inches deep and now is under 1. But it is not closed, still draining fluid, and has not changed at all in months. He wears ready wraps daily on his calves and feet, has twice weekly MLD, biweekly visits with his surgeon in a wound care clinic and STILL there is no end in sight. On top of it all, we are constantly dealing with weeping on the back of his thigh, that at this minute is dripping like we tapped a maple tree. Due to the odd shape of his thigh, I cant get compression on his thigh to try to slow the flow.I wonder if an UNNA boot would "stick better". Can you just make one at home? He was fitted yesterday for a thigh piece for his ready wrap (they wouldnt do it previously due to his large surgical wound at the time) Hopefully when this comes in it will fit appropriately and we can maintain some compression. His thigh is greatly reduced, but still very large and hard and clearly fluid filled. Surgeon is at a loss as to what to do next to get this to close, and if he doesnt know, who does? Maybe wound vac? Up until now the surgeon believes the wound vac wound just fill canisters constantly with no wound benefit, but I am at a loss for other suggestions. ANY SUGGESTIONS????? This is so frustrating. No one knows anything, I find we teach the experts, we guide them, we diagnose, etc. Why doesnt anyone know anything? I am tired, my husband is tired and yet we go on. Also, I would love to post his "before" pic, but I cant figure out how to do it. Any suggestions?---Brenda :?
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby patoco » Wed Dec 21, 2011 3:25 pm

Hi Brenda

Been thinking over and over about what to go from here for your husband. I simply can not imagine going through what he is going through (or you either as his wife who loves him).

I don't know where you are, but clearly it is time for these doctors to contact some doctors who are well versed in lymphedema management. They need to swallow their pride and contact someone who has more experience.

I do know these doctors personally and can vouch for them - and I'm sure they would be more then happy to help:
Dr. Stewart worked hand in hand with my doctors here in Atlanta several years ago.

Dr. Paula Stewart
Dr. Stewart is a physical medicine and rehabilitation physician who specializes in lymphedema treatment. *Hospital has staff of 7 therapists trained and certified in the treatment of lymphedema.*

Healthsouth Lakeshore Rehabilitation Hospital
Lakeshore Drive
Birmingham, AL

205-868-2098

-----------------------------

Stanley G. Rockson MD
Associate Professor of Medicine
Chief of Consultative Cardiology
Director, Stanford Program for Atherosclerosis and Cardiovascular
Therapies
Director, Stanford Center for Lymphatic and Venous Disorders
Falk Cardiovascular Research Center
Stanford University School of Medicine
Stanford, California 94305

Telephone 650-725-7571 FAX 650-725-1599

srockson@cvmed.stanford.edu

http://cardiology.stanford.edu/Programs ... aurora.htm

---------------------

Feldman , Joseph L MD
Assistant Prof Physical Medicine and Rehabilitation
American Board of Electrodiagnostic Medicine
Evanston Northwestern Healthcare
2650 Ridge Ave.
Evanston, Il 60202
847-570-2066

Fax: 847 – 570 - 2901

----------------------------

Kathleen Francis, MD, Medical Director
Lymphedema Physician Services
St. Barnabas Ambulatory Care Center
200 South Orange Avenue
Livingston, NJ 07039
Tel 973-322-7366
973-322-7500
Fax: 973-322-7450

There are others listed on our doctors page as well:

viewtopic.php?f=25&t=5

Just out of curiosity...have they ever considered hyperbaric wound treatment? This has been used sucessfully in a number of places.

http://www.worldwidewounds.com/2001/apr ... xygen.html

See if there might be any helpful info here:

How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/do ... dema_wound

You probably could rig up a home made UNNA boot with the right materials. Here is a page:

Chapter 15 - How to Make and Use Unna Boots

http://aplaceofhealing.info/health-smar ... oots-.html

I don't know if any of these will help, just know you both are very much in my prayers. I had some minor work last year and it took several months for that to close up, can't imagine your husbands wounds. I hope these doctors have learned from this in the future care of their patients.

Pat
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby brendaluvsgarth » Wed Dec 21, 2011 10:30 pm

Pat,
Thank you so much for answering. We are in Massachusetts, we are about 1 hour and 45 minutes from Boston, and we go there every 2 weeks to see his surgeon at the wound clinic at Brigham and Womens Hospital. His surgeon is very talented, kind and concerned, just totally at a loss. We just went back today to see them...with no change. Over the months I have been packing his wound with gauze soaked in dakins solution and then progress stalled so we used silvercell, but then he got smelly and pseudomonas so we went back to dakins. The dakins helps the smell and pseudomona, but healing stops. CAN YOU SAY "FRUSTRATION"? I have been desperately trying everything I can think of just to maintain and somedays we go back 2 steps. I found a product online called drawtex to pack the wound and asked about it today, they agreed it was worth trying and happened to have some samples to send us home with. Right now, the main issue is the back of his leg (which is NOT the wound site), but is just weeping buckets. I have kept a constant layer of cavilon barrier wipes and desitin maximum strength on it, which has kept him from getting macerated, but I just cant get compression on it due to the damn misshapen thigh. What about Coban? Could I just wrap all the way around his thigh with it? At this point, my employer is very unhappy with me needing every other wednesday off for trips to the dr, I am losing 2 days pay a month, $25 copay twice a month, $40 in gas, $20 to park all for NO IMPROVEMENT. The surgeon wants to re-operate, this time debulking to healthy tissue (which apparently wasnt possible last time). They feel his thigh is softer now and so there will be more viable tissue this time. They admit its a gamble, but with so much bulk to his thigh still and the chronic wound and the weeping to the back of his thigh, they have no other answers. This lymphedema is completely controlling our lives. I worry about my ability to keep doing this, his depression and feeling of hopelessness and I dont know where to turn. We pay a premium and copays, but our insurance is medicaid, so there are some financial limitations. I am however going to write to the doctors you mentioned, maybe they could confer with our surgeon. I so appreciate all of the time you put in to our issues. Thanks again--Brenda
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby brendaluvsgarth » Mon Jan 09, 2012 9:31 pm

finally, I can finally say with 99%certainty, after damn near 7 months post op



ITHINK HIS WOUND HAS HEALED!!!!!!!! :D IN 2 WEEKS TIME IT HAS ALMOST HEALED OVER COMPLETELY WITH VERY MINIMAL DRAINAGE. Thank goodness for Drawtex
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Re: Massive Lymphedema Lump On My Leg...Help!

Postby patoco » Tue Jan 10, 2012 8:28 am

brendaluvsgarth wrote:finally, I can finally say with 99%certainty, after damn near 7 months post op

I THINK HIS WOUND HAS HEALED!!!!!!!! :D IN 2 WEEKS TIME IT HAS ALMOST HEALED OVER COMPLETELY WITH VERY MINIMAL DRAINAGE. Thank goodness for Drawtex


:) :) :) :) :)

How awesome is that? Great way to start my day Brenda :!: :!:

Give hubby a super thumbs up for me.

Pat :mrgreen:
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