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Panic Attacks from Body Changes
May 18, 2010

Hi, my name is Athena and Bartleby - BBS Moderator, recommended you. I had posted on the Bulletin Boards under Living with HIV the Subject was called I need some help - Here is my story by Atheena.

I have extreme case of Lipodystrophy - Buffalo Hump, all fat has been redistributed from my butt down to my toes, face and shoulders down to fingers. So that leaves my trunk area with any fat that is left - Abdomen, belly, neck, and the entire back including the buffalo hump. I was on the meds that could cause this from 1999 - 2004 Sustiva, Epivir, and Zerit (does not effect everyone). Then in 2004-upto date, I was switched off these meds and placed on Norvir, Truvada, Reyataz and the changes in my body went from moderate to extreme. I am a small person so the buffalo hump, neck, and face are the most visible. I am learning the best I can on hiding at least the neck and buffalo hump from the public few. I am trying not to become a recluse but everyday is getting harder and harder on me. I have always been active, ate well okay ate almost everything (cant lie there), and was into bodybuilding just not to the extreme being a woman. I have already been to several plastic surgeons and mainly only went to those who have or are currently dealing with this type of fat (Visceral Fat). My body has a mixture they just are not sure how much of this could be under the muscle and how much actually could be at the surface. The procedure would have to be down in two sessions and several months apart so my body can recover. The type of procedure I am looking at is very expensive if going to the right surgeon. But every plastic surgeon I go to says my Medical Insurance will not pay for this procedure. I have see some of your feedback and see it my be covered by insurance. My insurance company has told me to get a letter with procedure codes and to send it in for review. Do you know of any Plastic Surgeons down in the Houston, Texas area that work with people like me? My CD4 is between 900 1200 and my viral load is <50 copies. So yes, I am doing great on keeping the virus in check but that does not help me physically and now mentally. Sorry to make this so long just trying to explain so you know where I am coming from. I used personal trainers in another state but nobody knows my status today and I rather not disclosure if I dont have to. I have seen a Nutritionist, and eating much healthier foods, and have cut out as much Carbohydrates, Fats, and Cholesterol as humanly possible. Anyway, I am looking for any exercises to try and reduce this fat on my own somehow. I do have a universal gym at home just bought this year, but have not given it my all. I am trying to get my mental status on track but that is another story all together.

I am looking for any advice on a workout program and possibly adding fat reducing drugs or whatever as long as they do not affect my meds. If you need more information to give me some guidance, please ask away. On the other hand, if you know of someone in Houston TX area that would not have a problem with my status and not disclose my status to others (personal experience in a gym a long time ago) that would be great.

Thank you in advance for any advice or recommendation you might be able to provide. Athena

Response from Mr. Vergel

I helped to create the Body Positive Wellness Clinic in Houston, which is now operated by Legacy Clinic. You can apply there to get exercise training three times a week for 12 weeks, visits to the dietitian, massage, acupuncture, etc, For a Legacy staff directory, call (713) 830-3000 and follow the voice instructions.

Dr Mary Shin is well known in doing liposuction and getting insurance to pay for them using pain, bloating, depression, sleep apnea as a justifier.

Are you exercising and eating in balance? You may also want to ask your doctor to perform a glucose tolerance test to see if it is impaired. If it is, you need an insulin sensitizer like glucophage (Metformin) which will make your body use insulin better to burn sugars for energy, If your norvir boosted protease combo has caused most of this weight gain, it could probably be switched to a combo that blends Isentress plus Truvada, That combination does not seem to cause insulin resistance problems.

Here is a letter:

his is letter is to Blue Shield from a person with a buffalo hump.

The letter from the Doctor is the second letter.

Federal Employee Program

Ref #xxxxxx Proc Code 15876

Thank you for your phone message today explaining the refusal of benefits for my surgery. I was very surprised that the photos and letter were not requested by your office prior to the consideration.

The surgery is most definitely not cosmetic. If I were worried about looks I would have had the surgery done years ago after the hump started forming in 1997, and long before the discomfort and movement problems began. I have enclosed a letter from my primary physician, Dr. XXXX, explaining the need for the surgery. I am also enclosing photos taken by Dr. XXXX during our first consultation. They are similar to the photos shown on CBS "60 Minutes" on the January 21 program on AIDS.

I have chosen Dr. YYYY to do the surgery. The primary reason is that Dr. YYYYY is the best doctor I know of in San Francisco to have performed this method of ultrasound liposuction on the "buffalo hump" form of lipodystrophy. I consulted with four surgeons and two additional doctors (my nickel). Regular liposuction does not work, as the hump is very fibrous.

One of the surgeons, Dr. ZZZZZ, has performed surgery on "buffalo humps," however, his method is not recommended as it is very invasive, even though the procedure (code 21556) is invariably covered by insurance. I would rather have the best form of surgery than be guaranteed it be paid for.

The only problem with Dr. YYYYY is that many of his surgeries are indeed cosmetic, and he has a very small office staff. For this reason, his office misstated the need for the surgery, and his payment policies require payment up front, with the patient dealing with the insurance companies.

Please reconsider this procedure. I think you will concur that it is medically necessary. I have found in my 40 years of experience with Blue Cross and Blue Shield that you are usually fair.

Yours truly,

AAAAAAAA

______________________________________________________________

To the insurance company from my primary physician:

Mr. AAAAAAA is presently a patient under my care. He is being treated for HIV infection and its accompanying symptoms. He is presently suffering from sequelae of both the disease process and its' standard treatment with anti-retroviral agents. The main problem at this point is what we have termed lipodystrophy, which for him is an abnormal accumulation of fat in the dorsocervical region. Unfortunately it is no longer a cosmetic issue but rather has reached sufficient proportions to alter the normal range of motion for his neck resulting in limited extension and a forced forward flexion. The normal cervical vertebrae alignment has also been effected to the point he is now suffering from bilateral cervical nerve impingement with paresthesias in both upper extremities.

It is now medically necessary for Mr. AAAAAA to undergo surgery, preferably a form of liposuction to limit surgical complications since he is immune-compromised, to correct this problem before the deficits he is now experiencing become permanent and irreversible. With your approval he will be referred to an appropriate surgeon.

Sincerely,

Dr. XXXXXX



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