Liposuction for DD management

I have had a lot of growth in my legs lately. I swell from about my waist down every day that I am on my feet for any amount of time. I work 12 hour shifts as a nurse and will have to for at least 2 more years for health insurance. On those days I can’t get pain relief at all and wake up at night in excruciating pain. I am considering liposuction to remove some of the lipomas hoping to decrease the pain. Have any of you had it and what are your recommendations on this.

I want to remain at the highest level of functioning for as long as I can. I would appreciate input about when is the best time to consider SSI.

I’m so glad to have found this forum and I am amazed at how everyone seems to be going through the same things as me.

Your friend, Lisa Moon

Lisa,

First of all, while I’m about to toss out what is basically medical advice, don’t have to tell you that you need to consider this carefully with your own health care providers. But I’ve been down the Dercum’s road for a while, and have read just about everything I can find on it and the related symptoms, etc.

It seems to me that your swelling would benefit more from compression therapy than from a surgical approach. Two half hour sessions of compression therapy could probably happen while you’re at work, on your meal breaks, or before and after your shifts. When I took the therapy at the hospital, I used a full-length boot, which compressed 7 chambers from toe to the top of my thigh. Now, at home, I have one that goes to just to the top of my knee. (I’m considering asking for a higher boot - I know my thighs are swelling now, although they weren’t really before.)

Compression therapy, when successful, is almost like magic! It can be painful, especially the first few sessions, when your legs are the puffiest. My doc actually prescribed Tylenol with Codeine for those times. Later on, it was only slightly painful. I started doing it again after having taken a break, and I’d forgotten how it would hurt those first few times. WOW! So don’t be shocked by that. It’s worth it though.

As for SSI, there have been several discussions here about that, and I’d refer you to those, just highlighting here a couple of points I was advised about before I applied.

I was diagnosed about 3 years before I was fired from my job for not keeping up- they actually cited my health issues as part of the problem. Six months later (during which I was able to collect unemployment benefits, and since we’d seen this coming, we were prepared for a reduction in income) I applied for Social Security. I emphasized the conditions which are really side effects, like lymphedema, fatigue, pain, inability to concentrate. I was specific about dates and locations and durations. Use your training and log everything. This will be very helpful when you apply. Both of my physicians (PCP and Dermatologist) were aware that I was applying and very supportive.

The day I got my last check from unemployment compensation, I was notified that within the next 10 days to 2 weeks, I’d receive my first monthly check for SS. Incredible.

My heart goes out to you. I have a friend who is also an RN and also has Dercum’s. She’s still working long shifts - for the same reasons you are, and to put three kids through college! - and I hurt for her when I know she’s worked two long shifts, back to back. It’s really too much for her.

She hasn’t joined this group yet, btw. She doesn’t really have the time for a group yet, using me to bounce things off of. The Lord led us to one another through a theology discussion group (on the 'Net) where I met her husband, a pastor. As we chatted, he realized his wife was going through (undiagnosed) what I was going through. He hooked us up and we became dear friends. Both our husands have been great about cooperating with meetings - I’ve been there, they’ve been here, we’ve met other places. We’ve got half a country between us but we’ve spent a lot of time together, and her kids are now part of my “nieces and nephew” group! :slight_smile: She’s still homeschooling the youngest, and with the duties that go with being a pastoral family, other extended family responsibilities and working three part time jobs, this kind of group is in the future for her. Her name is Jane if any of you feel led to pray for her.

Sorry for the digression. I was trying to emphasize, Lisa, that I am aware of what your legs must feel like at the end of the day. and working in that kind of pain can be dangerous. It’s difficult to concentrate and hard to follow through, etc. Check into the compression therapy. What kind of pain meds are you using? Obviously narcotics are out. That’s why so many of us end up on Neurontin. (For me, a combo of Neurontin and Cymbalta has been very effective.)

I’ll sign off for now, as I’ve been rambling more than a bit.

Gentle hugs, and prayers, too.

me (aka Cindy) <

Cindy,
Thank you so much for replying to my post. I actually have been using narcotics, Oxycodone IR 5mg and have to take 3-6 per day. They often don’t give me much relief. I also take baclofen, which is a muscle relaxer. I actually have a full prescription of neurontin in my medicine cabinet but I am afraid to try it because I have had strange reactions to many drugs such as Zoloft, Prozac, even antinauseants like Reglan Compazine and the like. Maybe I should go ahead and try them. I will see my pain management specialist today and ask him about prescribing compression therapy but I would not have time to do it on the days I need it most because I am lucky if I even get a full 30 min lunch. I will add you and your friend to my parayers. It really helps knowing there are people out there who understand.
Lisa

Hi Lisa…glad to have you in the group. It has helped me a lot having others to talk to. I have not had liposuction but my belly is full of lumps of course…since they are in all of my fat. But I have had it for sooo long…40 years. I like what you said in your profile about liking strong women. My friends all seem to have that in common. It makes me stronger when I see the way they have been able to stand the worst of adversity and come out still smiling and still full of life. My one friend lost her husband and son in a house fire. She was able to get out of the window but could not lift her husband out. Another son had lung damage from smoke.Gerig’s. This taught me that you can always find others who have a harder life than you do. We all have a good time when we have girl’s night out. I think nurses are wonderful and I have had many be kind to me over the years. I think it is a marvel that people can be smart enough to be doctors. How can they learn so much in one lifetime? As a nurse, you may be better able to care for yourself. I worked for Aetna for 23 years so I acquired a lot of medical knowledge and terminology. We need everything we have to cope with DD. The other women in this group all seem very nice. I need to find help for my swollen ankles and feet. I have diabetic neuropathy and take insulin. I will let the group know if and when I find out anything. I think our main hope at this time is Dr. Herbst. : )

Sylvia,
Thanks for welcoming me. I feel so much better since I’ve found this site. I don’t like to vent to my family so much because I don’t want to bring them down.
You would think that as a nurse I would care for myself better but I just don’t think about myself in the same way I do my patients. I went to the doctor to discuss additional treatments and he gave me a Rx for Lasix for the swelling I have been having. Such a simple common medication that I give daily to others and it didn’t even cross my mind that it would benifit me. I also started taking Neurontin for pain management and so far I’m not having unbearable side effects. I’m also using less Oxycodone. I still think I might try liposuction because I think if I get rid of as many lipomas as possible and as much excess fat as I can it may improve mobility and prolong function. If I do I’ll post the results on this site to let others know how it turns out.
In the back of my mind I think about the impending doom of SSI but I can make so much more income if I can continue to work.

I meant to say that my other friend’s husband has Lou Gerig’s disease and another close friend cares for a husband with MS who can not lift his head. A nurse comes in during the day when she is at work. Both women still work which is terrible that they have to, but they need the health insurance. I am grateful eveyday that I do not have to go to work anymore. It was foolish of me to work so long in so much pain. I have not gotten any better not working but at least I am at home where I can do things to make me feel better. I am sitting here with my back massager and an ice bag and just loaded up on Gabapentin and Excedrin so I can watch “Idol”. I love to listen to the young music makers! And I love the emotional support we give each other in Careplace!!

I am seeing a plastic surgeon on the tenth of March, for liposuction. My dermatologist has referred me because my hips UK size 12 and my waist is size 22. My abdomen is full of Dercum fat, a size 12 maternity trousers convinced her that I have major problem. I will let you know what happens. Please note in the UK we have national health service, access to hospital treatment is delayed for non urgent treatment due to more demand than ability to deliver treatment. In the UK liposuction is not normally available under the NHS, its normally regarded as cosmetic surgery. The out of balance sizes means that surgery is neccessary in my case.

Hi Saz,

I wish you luck with the surgery. Keep us posted once it’s done. I would like to say I’m envious, but I don’t think I could live through absurgery of that nature. Not sure why I feel that way, maybe because I’ve seen to many on TV and the healing process etc. seems way long and painful. I hope that will not be the case for you.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

Hi,
I went to an appointment with a plastic surgeon for liposuction for the lipomas. He wouldn’t touch me because mine aren’t at the surface where he could see them. He wouldn’t do lipsuction unless he could physically grab the tumor to suck it out. Good luck I hope you have better luck than I did. I do have neuropothy in my legs and water type sacs that really make my legs look gross. I am 39 years old. I just pray everyday that technology keeps up and someday there is a cure or better treatments. I filed Soc. Sec disability in Dec. 05, just had my court date Jan. 4th, 2008 and the judge has up to 8 months to make a decision by law. Then after that I was told it could take up to 6 months to get a check. It is a long process. I am on oxygen too, you would think it would have been faster??? Good luck hon’ and please let us all know what happens. Take care and I will be praying for ya! hugs, Linda

Linda,

I can’t believe they are dragging their feet so much on your SSI!! How are you surviving financially in the meantime? do you have an attorney on this?