Too fat for therapy!

HI-

I have a lot going on here, and I hope I don't confuse anyone reading my post.

I have  a very large area of hardened lymphedema tissue on the back of my left thigh.  It interferes with sitting, and is extremely disfiguring.  My doctor send me to a lympedema clinic for treatment, but the doctor told me I was too fat.  Unfortunately, this hospital is the only one that has a lympedema clinic. 

I was just told yesterday that I need a left knee replacement, and the doctor knows I'm scheduled for a duodenal switch in February.  He says before he can replace the knee, I will need to have reached my weight, and have the loose skin on my lower body left from the weight loss reduced ( I am a super pear shape; I carry most of my weight in my hips and legs).  The doctor says he could not get adjust the knee with the big lump of tissue sitting there,  It does currently interfere with sitting and bending my leg.

I am currently disabled, and am on Medicare and Medicaid (with a ridiculous spend-down)

I have nowhere to go, but I'm afraid that Medicare will not pay for t he body lift and removal of the hardened tissue, by deeming it cosmetic.  

Suggestions anyone?


 

If it is considered medically necessary it will pay for it, what supplement do you have for your Medicare, I have Humana Gold and just had a pannieculectomy done on the 10th of December and what do they mean you are too fat to have therapy I was shaped that away before losing 250 pounds I am still bigger in my hips and legs and have lymphedema in both legs. I had therapy for the lymphedema way before the gastric bypass and had very good results.

I think it is just this particular doctor's preference not to treat morbidly obese patients.

I will likely have to go out of town for treatment.

I would suggest trying a Physical Therapist - not an MD.  There is special certification PT's can do in Lymphedema therapy.  I have lymphedema in both my lower legs - and when I had therapy I was 330+ lbs - my PT told me I was one of her 'medium' patients.  The process with these PT's can be very long - they do manual lymphatic drainage massage and bandaging (and don't use machines) - but I would have to say that my PT was wonderful, no condescention and nothing but helpful.

Maris-

That's the problem-  the only PT's in town with that  special certification work in this Dr's clinic.

No one else (and I have asked around) has that certification. 

Google manual decompression treatment and see if you can't find a listing of certified providers.  I was almost 400 lbs when I had my lymphadema treatments at our local rehab hospital.  I had mine outpatient because I was working.  My therapist did a lot of the Medicare Medicaid work in hospital.  My provider was at Siskin Hospital in Chattanooga TN.  My PT showed me pics of people who were much larger than I and the before and after pics were remarkable.  Manual decompression treatment is a lot of work, but it is amazing and mine was some combination, progressed beyond level 2 but not to the point entirely of level 3.  I have since lost 203 lbs with lap band, had lap band removed and have regained about 50 lbs then lost 8 of it.  I have much more problems with the swelling at 212 than I did at 170.  I will probably have another surgery this summer, I am thinking the gastric sleeve since my stomach prolapsed with the band.  It would probably happen again.  Frankly I am scared of the sleeve, but I am more frightened of regaining all my weight back.  You certainly have a complicated situation, but I do believe that God makes things possible that we never thought possible on our own.  Take one step at a time, and you should be able to find a way to get the lympedema treatment even if you have to travel.  My PT told me that many of the patients he treats are from neighboring state.

You should have someone with you supplement that is assigned as your case manager.  Get in touch with them, explain the issues and see if they can't help.

Good luck to you on this long journey.  The skin can be dealt with.  I am still carrying loads of extra skin even with regaining part of my weight back.  The skin is easier to carry than the weight.

Corliss

Go back to the lymphedema board and a guy has posted a link where you can find all the certified therapists in the US by putting in your zip.  Good luck again.

Corliss

Corliss-

Thanks for the info, and keep me in your prayers on Wednesday.  That's the day my new life begins!  I'm having a DS!

This would have been the PT in the Lymphedema Clinic.  The doctor has to approve or deny patients for treatment.  I will look around Indianapolis for treatment.  I just received my compression garment last week, and, it will fit for a while.

I've got 217 pounds to lose, and surgery is this coming Wednesday.  As long as I have medicaid, I can b e transported to and from treatment.

I also had ab out with panniculitis this past spring.  My PCP took care of that.

Hi Jazz,

I feel for your situation (I grew up in a very rural area with extremely limited services so I know how it can be not having a lot of choices).  It's a little weird that you have to go through the hospital DR to get to the PT's.  When my PCP referred me, there was no other middle person - I saw only the PT.

What I would try is a couple of things:

#1 having it out with this doctor (nicely) - you have a medical condition that is interfering with your ability to function (sitting is pretty basic).  It can also get lots worse if you get a sore/ulcer.  He is a medical professional with an OBLIGATION to help you (especially if he's the only game in town). Maybe talk to the doctor that referred you there and ask them to help intervene. There is no such thing as "too fat" for this treatment.  Bandages don't exactly run out!  Document these attempts - take a tape recorder with you if necessary.

#2: You said he heads up treatment at a hospital - I would instigate a complaint with the hospital administrator.  I would give them your documentation on your efforts to resolve this issue with the DR directly and give them an opportunity to intervene.  If they won't do anything I would then make whatever threats you need to   hospitals generally don't like the thought of being sued (for example, media exposure for another, posting your experiences on every MD/hospital referral site on the web for others).  The hospital is his employer - they are responsible for his actions, and they are reponsible for ensuring your problems with him get resolved. Sounds like this is also going to hold up your ability to have another necessary procedure done on your knee - further impacting your health.  I'd simply point out that the hospital's refusal to treat could result in further/worse issues for you - and those issues would be a direct result of their inadequate care and unprofessional behaviour.

#3 if after all that you still don't get anywhere - then I would report the bast**ds.  The medical association and the state licencing board for starters.  (Doubt you'd want him to treat you at that point - but he shouldn't be allowed to get away with this).

Just because we're obese does NOT mean we do not have the same right to medical care and treatment as everyone else - in fact, I believe that there are a ton of federal laws requiring medical professionals to treat everyone equally (since you are on disability that goes treble)! Eg: Americans with Disabilities Act.

Obviously you need to decide which is the better path for you: travelling a long way to get treatment elsewhere or fighting back. 

Good luck with whatever you decide - I've learned the hard way that Lymphedema is nothing to mess around with.