My Experience - Wisconsin

I have very painful lipomas. Sometimes they have...

I have very painful lipomas. Sometimes they have been called Vascular Lipomatosis or Angio-Lipomas. I have had hundreds (yes that's correct) removed surgically. I have been doing it over 20 years. The first Lipoma was taken out in 1983. I think I've had close to 800 take out now.

My first surgeries were done under a general and I had from 70 to 140 removed at a time. At that time, they closed the incisions with staples. I would have sometimes 250 staples or more. Now, we have been using tape closures or stitches for some. Much nicer !

This winter I've had over 70 removed already and have 4 more surgeries scheduled where I have from 1-20 removed with a local. Average is about 12. Many times it felt so much better after surgery that I didn't require any pain medication. Some are very large some are small. Some are very deep some are not. Sometimes we will find as many as 3 pushed down underneath the one that's visible. Those can be painful as they have to add more local to the incision.

Every winter for the past few years I spend about 4 to 6 months (every two weeks) having surgery. The pain from the Lipomas is enormous. It feels like I have about 75 vice grips pinching me all at the same time, so when I move, it hurts if i stretch in any way. I had 15 taken out of my left leg a few weeks ago and I can finally bend my leg without it hurting again.

Throughout the years they have caused muscle damage and nerve damage. At one point I lost the feeling in my right leg for about 4 years. After a surgery, the feeling came back very quickly and was so painful because I'd had no feeling for so long, but it did subside and I still have close to normal feeling in that leg.

My point ? The surgery is well worth it. Don't let the Lipomas keep growing. Some of mine have attached to veins and arteries and made it all the more dangerous. The roots can attach to anything. It would be too dangerous for me to have liposuction done because of that fact. Had it been done on the ones that ended up needing multiple cauterizing, I could have had serious problems.

I have never had to stay overnight in the Hospital. One surgery they took 140 out and wanted me to stay but I have been doing it so long, my house was set up for surgical aftercare and was much more comfortable at home. So I went home the same day after being under a general for over 6 hours. (not recommended, but I had way too many and they had gotten out of hand).

In my opinion, opt only for surgery. If you have just a few in your lifetime. The scarring will be minimal and probably disappear. My scars only show recently usually for a couple years. As I age, (now 46) it takes longer.
I highly recommend having them removed.

I thank my doctor though who has done all but a couple surgeries. Each surgery takes away unbelievable pain and discomfort. It gives me some time to move and do things easier. I would be happy to answer any questions if there are any.

In the "cost" field. I just put a number from one of my outpatient visits. That number will vary with provider and type of surgery. Each is different, as is, each doctor and patient. Most insurances will cover them. I have been lucky.

I have lipomas under the skin, but they don't protrude much. However, if I rub my hand over an area, I can feel hundreds of lipomas from the size of a grain to the size of a golf ball. My doctor told me that my weight loss of over 50 lbs is the cause of the lipomas, and they may increase as I lose more weight. But I feel that his response was an insult, and he was just trying to pacify me. I have had the lipomas for years, long before I lost any weight. I have fibromyalgia and Sjogren's syndrome, along with hardware in my lower back and two knee replacements. My shoulders hurt from the lipomas and I have decreased mobility because of them. They are growing, and I am very concerned. Who can I consult to get some answers about the true cause of the lipomas and what I can do about them?
Please read about guaifenesin if you have fibromyalgia. I have read that its very helpful in such cases.
The true cause of the Lipomas (in my case) is still not known. To removed them, the only safe way, is to have each one removed surgically. I would say I have Fibromyalgia symptoms but that is caused by the Lipomas. When I got my first one I was 19 and weighed about 140 pounds at 5'7". I have personally noticed that the heavier I have gotten - the more I have gotten. It's a continued guess to find out why but the main thing is to have them treated. My opinion on yours is that when you were heavier you just did not notice all of them. As you lose weight they become more noticeable and will be a lot easier to find. That is from personal experience. I gained weight in my early 40s and went to 250 from 175. Than back down to 190. during that time i noticed them more. I think the formation of them may come from Gaining weight. Than they are noticed more as weight is lost. Finding a Dr. that is knowledgeable and willing to work with them can be difficult. Lipomatosis is often ignore or treated as a minor problem. It is not. Start with a general surgeon. Possibly in a smaller practice. My surgeon was just starting out when I first went in over 20 years ago. I now have mine removed in the office with a local and do from a couple up to about 15 in one visit (by the same surgeon). Start out small if you do. Liposuction can be dangerous if one or more is a angio-lipoma. It can be attached to a vein or artery. When liposuction is done you can start to bleed internally. I normally have a couple that have to be cauterized each time I go in. As a rule, I have the most painful taken out first than sort by size after that. Just for the record also, Fibromyalgia and Lipomatosis are separate conditions. Lipomatosis pain is similar but different. I can have a tumor in my left arm cause pain in my back, hands, or shoulder. It depends on what nerves are connected. I've had aches that I thought I would not survive and completely go away after one tumor is removed. There are no absolutes. I understand your lipoma pain. It can be terrible and it is very debilitating. The bigger they are, the more dangerous they are and the more damage they can do. They can definitely affect you. They can result in a very widespread list of symptoms from a sick stomach , numbness, body aches, anxiety, sweats, lack of mobility and yes, even death depending on where they occur. They can occur anywhere in your body. My best of luck to you. Please remember I am speaking from my experiences - each person may be affected differently.
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