RE: Lipo

[Guest guest]

Glenn,

One of the frustrations I have with this list and its predecessors - PITreat, Lipodystrophy, and the original Crix List - has been the relative dearth of discussion about fat accumulations in the face and neck. I have mentioned on numerous occasions that I have suffered with the very problem you describe, except I weigh 165 and at one time had a 20" neck. I have never weighed more than 180. I have since had to go on a diabetic diet for six months (false alarm), lost 40 pounds, went on a treatment interruption for 18 months, gained back 20 pounds, and my neck size is now 17 1/2. I have had surgery for my hump, then a liposuction touchup and liposuction on my chin, all in 1997. My hump is noticeable only if you are looking for it. There was little improvement in my neck. The cosmetic surgeon suggested that it would continue to grow back and possibly require liposuction every six months. You're right. Even if the liposuction was successful there would be loose skin, requiring further cosmetic surgery.

I was very fortunate back in 1997. I was referred to the cosmetic surgeon because he was an ENT specialist, too. The general surgeon who had performed the surgery on my hump was not willing to work on my neck/face, insisting I get a referral to an ENT specialist to address the fat accumulation on my chin/neck. It was the ENT specialist/cosmetic surgeon whose office fought for and received the authorization from my HMO to have it covered. I didn't see the letter that was submitted to the HMO justifying the treatment but I know he was concerned about neck mobility and pain. The neck mobility was very real. I was unable to turn my head to properly look back for traffic when changing lanes for example. The pain part was a little overkill.

I also convinced my PCP to refer me to a sleep center to determine if my constant tiredness and lack of concentration might be caused by a sleep disorder. After a sleep study - a truly bizarre experience - it was determined that I had a severe case of disruptive sleep apnea. At the initial consultation the doctor speculated that I could have the disorder since it was very common in men with neck size over 18". I was waking up almost once per minute for about six hours of the study. Only after setting me up with a CPAP (Continuous Positive Airway Pressure) device was I able to get to sleep and actually get to the deep sleep a person needs. I eventually received a CPAP device through my HMO and have been using it since. It has made a world of difference, although it is a bit of a nuisance and can be a bit noisy for bed partners.

While all of this was going on I was downsized out of a job just short of my ten year anniversary (2002). It has been a rough struggle ever since. My latest job title was Human Resources Consultant. Before that I was an administrative and executive assistant. Before that I designed complex telephone systems for large companies. Jobs at that level in those industries always require a face-to-face interview where it is expected that you will wear a coat and tie at the least. I can't. Add to that the fact that every time I look in a mirror I see a very ugly person. You can imagine how that can instill confidence at a job interview. Then, once I am offered the job and the now standard drug tests are administered the offer will most likely be withdrawn without explanation other than I didn't pass the drug test. I take Marinol to maintain my appetite. Extensive training in Human Resources practices tells me that there would be no opportunity to explain the drug test. Besides, knowing that I am taking Marinol would automatically tell them I either have cancer or HIV even though they can't specifically ask that question. What are the chances they would hire someone with either cancer or HIV if they knew in advance. So I applied for and eventually (18 months later) was anointed disability status from SSDI based on AIDS Wasting and mental/social problems associated with HIV and lipodystrophy. I am still trying to find a way to live on $1600/month. Oh, did I mention that I had been suffering from undiagnosed Lymphogranuloma Venereum (LGV), an extremely painful condition, for two and a half years that was finally diagnosed and successfully treated about six months ago? It's been a rough few years.

But - there has been good news. As I mentioned, my neck size has reduced and seems to be continuing to improve. My partner has mentioned he has noticed a change. My IDS has also mentioned that he is noticing a difference. I have noticed that the very firm fat deposit under my chin has not only reduced but has actually gotten less firm. The fat on the back of my neck seems less but is still very noticeable. My lipo belly that only started to be really noticeable about four years ago has receded somewhat but that could be better. I am actually regaining some muscle (and fat?) in my butt, arms, and calves, though I'm not yet noticing much improvement in my thighs. With the diagnosis of the LGV and successful treatment with antibiotics I am gradually healing and should be able to return to the gym. I have been taking testosterone and nandralone for this entire time, which may explain some of the body shape improvements, but I suspect that returning to the gym will amplify the effects.

I had spoken to my IDS over a year ago about my eventual goal of trying to get some of my self-esteem back by trying again to treat the lipodystrophy (in my case severe lipohypertrophy and mild lipoatrophy). We agreed that would have to wait until after the proctosigmoiditis (eventually diagnosed as LGV) had been resolved. Now that I am almost recovered from that I plan to investigate my options for regaining some of my appearance. At a visit last month (for something unrelated) to my dermatologist he asked out of the blue if I was familiar with Sculptra. We had never discussed the lipoatrophy so, obviously, it is apparent at least to a dermatologist. He confessed his office was not going to be treating with Sculptra but he knew of several doctors that were if I should ever be interested. Between the recent postings about Sculptra's Patient Assistance Program and California's legislation that HMOs might be obligated to pay for these treatments I do have some hope that I can at least regain SOME of my appearance sometime in the future.

Glenn, since my diagnosis in 1990 I have struggled to remain hopeful. I was told the average time an HIV+ person lived after diagnosis was five years BUT there were a number of new medications on the horizon that looked promising for extending that timeframe. So I was hoping for a cure by 1995. But on AZT I managed to hang on to my CD4s, without any OIs, until I went on a "cocktail" in 1997 that included Crixivan and Zerit. But I had already developed the fat accumulation around my chin and neck and was just starting to notice the hump BEFORE I added the new meds. The new meds, though, seemed to accelerate the fat accumulation. Like you I could celebrate that I was living longer than expected while at the same time lament my physical disfigurement and the associated lack of health problems, self esteem, and depression. But so far, at least for me, I continue to try to find hope -- much of the time it comes from this very listserve.

Just these past few weeks we have heard about studies that appear to be able to test if a person has facial lipoatrophy through some sort of markers (single-slice computed tomography (CT) and skinfold analysis). Growth factor IL-7 is being tested to confirm reports that it can destroy HIV in what had previously been latent reservoirs where the virus hides from the meds. California's legislation that requires HMOs to cover lipodystrophy treatment in many cases and Sculptra's Patient Assistance Program should help many of us who would otherwise be unable to afford these treatments. Having waited since 1996 for some news on the treatment of lipodystrophy almost all the hopeful news has been very recent. THAT in itself is hopeful. Keep your chin(s) up. (sorry, couldn't help it) Things can only get better.

Sorry this was so long-winded. I don't post often.

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"There's some good in this world, Mr. Frodo, and it's worth fighting for."

- Samwise Gamgee

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Dennis of Los Angeles

m.muaddib@...

From: glenn45040@... Sent: Thursday, January 06, 2005 12:08 PMTo: PozHealth Subject: Re: Lipo

I hear plenty of complaints about Lipo belly and sunken cheeks but not much about my problem. I have accumulations of fat in my chin which makes me have a huge double (triple) chin. I weigh 180 and from the neck up I look like I weigh 500. Has anyone else had this problem? I don't think just liposuction would correct the problem as there would be huge amounts of lo o se skin after the liposuction. It would also require a face lift I think. I am on medicaid and there is no way I could afford $8000+ for the surgery.

The pills may have given me back my life but they have taken away my pride and dignity. I supposedly live in the greatest country in the world. Isn't it a shame that the greatest and richest country in the world would refuse to give a person back his life for a mere $8000?

Glenn