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.

Was this review helpful? 5 others found this helpful

Comments (38)

Sort by

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?
  • Reply
Please read about guaifenesin if you have fibromyalgia. I have read that its very helpful in such cases.
  • Reply
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.
  • Reply
Hi friend, I am a 27 year old male and have these fat lumps on my stomach, back and chest region. The first appeared around 3 years back. Those on stomach and back are a bit large but those on chest region are very small and are mostly near ribs or between them. They are painful during their initial growth but painless in later stage. I am so scared that what it is and it is really killing me psychologically. Please tell me what to do as I don't want to live with them.
  • Reply
You can have them surgically removed. If you keep up on them, the scarring (for me) was minimal and the relief was enormous. Have you been diagnosed by a Dr. ? Do you see a Dr. ? I also did counseling to help deal with it and that was important. It can play on your emotions because the stereotyped image of having a "tumor" or "lump". In general, it scared people very badly. I also have them on my ribs and between. Some hurt bad when small some don't on me. I never know which its going to be. If you are seriously depressed or having any thoughts about hurting yourself please call a local emergency line. I felt the same when it started (around the same age when it started). You can survive and enjoy life and social and physical interactions. I normally have mine taken out in winter so I am healed by summer light clothing time. There are some red lines for quite a few months but they do go away and you will feel so much better having taken action. Having someone to talk to about it on a regular basis is very important. You survive this- It is not the end - just consider it a new 'route'. That's the way I look at life now - it's like driving. I never get lost - but if I feel like I am - I just change where I was going.
  • Reply
Geeze, what RELIEF to find this site today. I had a golf ball size lipoma in my back/shoulder blade area removed earlier this year. I have many small ones, in my arm and legs and have an appt. this week to check what appears to be a rather large one in my lower abdomen. I had NO Idea that a person could have hundreds of them OR have hundreds removed! My family doctor says don't bother them unless they are really large or causing definite pain. And, as some of you have said, unless you have them yourself, you cannot understand the pain and discomfort of them. Turns out the one in my shoulder WAS the cause of my almost constant muscle pain -- always thought it had to do with my job. I've been having a lot of "female" type issues for the past couple of years, since this tumor has been growing in my lower abdomen. Like uti's, for instance. I have had to be extremely proactive about this and I am the one insisting that an ultrasound confirm that this lump IS in fact a lipoma and then I will proceed. Have any of you had lipomas in your abdomen that caused issues? Also, a Reflexologist suggested taking Chickweed...anybody heard of that?
  • Reply
What's a good place around central NJ that can do multiple without charging per each lipoma taken out?
  • Reply
Hey Northern, thx, and keep your spirits up!

Rest of you:
If any of you have Lipoma, don't think twice about getting them removed, just do it (unless you are one of the lucky ones and only have one or two that never grow)! Every time I get them removed I have a weird physiological "uplift" feeling.
  • Reply
Thanks Rajibaji,
Great info. The dining room table would scare most, but, lol. It wouldn't bother me. Once you have a couple hundred taken out, its kinda like clipping your finger nails. Its just maintenance, lol. I like your upbeat comments though, its nice to see someone take the fear and depression out of it make the best of the situation. We really have no choice. Ya gotta do what ya gotta do. Even though I understand those feelings.

Great info also on costs. Not all Drs will drain your wallet. There are ways to get things done. It can be exhausting at times trying to find them, but don't take 'no" for an answer.
I've had the same Dr for many many years and have been lucky.

As for pricing here. Well. think about it. lol. A 40,000 house here would cost about 500,000 in any city. So we just let our Dr's whip out their butter knives, whiskey, and have at er. lmao.

Keep contributing - it's great to hear the ups and downs of "Lipoma Life" I think we all should have our own TLC tv show.

Take Care ! My best to all and remember when you call your insurance company.....

"Make it idiot-proof and someone will make a better idiot."
  • Reply
I too have very painful ones. A lot are on my back attached to my ribs and in between them. I have 3 on each foot attached to the tendion that runs the lenght of my feet, but my foot surgeon says not to have them removed because they will come back worse. I also have them in my thighs and arms as well and on my knuckles. when I bump my knuckles on something it sends me through the roof. I am seeing a surgeon in a couple weeks to have the ones on my ribs removed and some in my stomach. I have not found alot of info on them, but am glad to see I am not the only one living with this pain.
  • Reply
Great info on Lipomas, thank you everyone. And...Northern, I really feel your pain. I have approx 70 of them, but only a few are noticeable. I've had approximately 35 removed from my arms and now no one notices them any more. I have some on my legs above the knees and some on my chest and stomach. There are a few on my lower back. Mine do not come back and I've had most of them since high school. But, in High School 95% were smaller than 1mm, almost impossible to notice, I'm 46 now and some have grown more rapidly than others. The ones I've squeezed and picked at have grown more rapidly.

In the past two years I've lost 25 lbs due to heavy exercise and have started eating a lot healthier, avoid ALL junk foods, eating dessert once a month, etc. My cholesterol levels have fallen from 300 to 175. But more importantly, some of my lipoma have reduced in size! All doctors and medical journals say this should NOT be the case, but you cannot argue with results.

Cost of removal : when I have 4-8 taken out, the cost is anywhere from $400-$1000 ($25 co-pay) depending on the insurance you have. I've had a few friends take some out on their dinning room table (they were doctors). I cannot believe the BS rates that some of you have been charged, that is why our healthcare is corrupt! If you contact general surgeon and ask them to do the work offline where you just pay them $250-$350/hr, I think they would go for it! My removals of 4-8 take 45-60 minutes.

Removal : my doctor can make one incision and remove several that are within 1-2 inches from the incision. I've had several doctors cut these out. The less experienced doctors will make cut over each lipoma, not necessary! When the skin is cut open, all lipoma in the general vicinity should be removed. I've seen so many boneheaded doctors that remove one lipoma and miss a different one growing directly below the one being removed, etc.

I hope that helps!
  • Reply
It was an in-network surgeon that took me to an out-of-network surgical center. I didn't realize it was out of network. The charge is from surgical center. In-network surgeon gets paid less than 2% of the total cost. Maybe a referral bonus from surgical center.
  • Reply
OMG That is ridiculous. Was it a plastic surgeon or a general surgeon ? I'm still for a unifed health care system. Get rid of every single insurance company that raises the overhead so high for us and the dr's, and than health care can be reachable for everyone. Think how much 'fat" could be cut by deleting every outside insurance company. If they got rid of all the insurance companies and what they cost, for red tape and paper work, it would save BILLIONS in waste. Than healthcare could be provided for everyone on an even basis. Everyone deserves the same health care. It should not be base on income. We should all be entitled to the same cold medicine or cancer treatments. Period.
  • Reply
I got charged $4,600, $4,600, $4,950, $4,950 for 2cm lipoma (four of them) in ONE same surgery. I think there is a fraud involved. No wonder US healthcare is in the trouble. They are threatening to take it to collections for the remaining balance after insurance paid 80% off it.
  • Reply
Where do you get the 4585 for each one ? One of the reasons for doing more at once is because of the initial charges. If you get one at a time taken out its going to cost a fortune. If you do 10 it costs alot less since the surgical area is only prepared once and the instruments and bed are only use once for that session. Besides, people spend alot more on a new set of ta tas or some other vanity surgery. This surgery is meant to be a relief from physical discomfort and pain.
To answer the DR above. I don't have Dercums Disease. I have many Angio Lipomas. There are alot of misconceptions about Lipomas. Even by Dr's. They ARE painful. Not all, but many are. They are very uncomfortable when you have them in large quantities because they are stretching your skin and pulling on your muscles and flesh as you move or push against you on your legs or back when you sit. Even if the tumor doesn't cause pain itself, if you sit on it, lean against it or push on it from sitting or sleeping it can be very painful.
  • Reply
What is the cost billed to insurance for that many lipomas removed? 800 lipomas times $4,585 each would cost $3.6 million.
  • Reply

My husband has over 800 on his body as well. they get really big. He has had several removed lots of scarring and time of work. Been hearing alot about lyposuction to get rid of them less scaring and easier... Still looking into this..

  • Reply
Hi. I feel your pain. I've had over 200 removed myself and it is a difficult thing to explain to others (especially those with just one or two lipomas) just how debilitating having so many can be.
I've had dozens done 'a few at a time' as well as 3 bigger surgeries under general anesthesia where they've taken out many. After the first big surgery I woke up with 144 staples that they had used to close the incisions. (I would not recommend staples as they don't seem to heal as well as sutures.)
Lipomas which are painful (yes, they sure can be painful!!!) are usually the only ones that insurance companies will approve to have removed. I have no family history of them and I now have a daughter that has found a few.
I have used general surgeons, as well as dermatologists to remove them. I do think the dermatologist did a better job, but she also didn't do any of my bigger surgeries.
I frequently look for answers to this plight myself, and there just doesn't seem to be any. There are a lot of theories, but no hard and fast rule that gives any indicators as to cause or prevention.
Good luck my friend. You are not the only one in this boat!
  • Reply
Northern I'm not a doctor but I have Dercums Disease and this sounds just like it! please google that name or Adiposis Dolorosa for more information as there are things that can help, but not cure. It is a very painful disorder = normal lipomas are generally NOT painful.

blessings to you

and ROFLMAO at the poster below suggesting masturbation causes Lipomas..if that were the case, we would be a very very lumpy world!

peace and love to all
  • Reply
hi,
this isnt much of an information but its a bit.
now, i read in a website which claims to have a cure for lipoma for a minimal amount. but,personally i think it may be a scam. eventhough i got some info it says; that one of the ways lipoma can be caused is by masturbation, and i have realised that this is my case.
so boys, if you dont want to increase your count, just try to avoid masturbation.
  • Reply
There are different "favors" of lipomas. Some are very round, firm and easy to remove. They are found to have more dense vascular patterns and are called angiolipomas. Some are more crab claw like, growing into surrounding tissue. The claws need to be removed, or early recurrence will occur. A very rare problem is change into a cancerous lipoma called lipangiosarcoma. For that reason, they should be individually evaluated by pathology. Liposuction is rarely used, but can be the best answer for cosmetically sensitive areas. As a plastic surgeon in Wi, I have removed up to 160 lipomas in a single procedure. Skin is rarely, if ever removed for benign disease.
  • Reply
There are different "favors" of lipomas. Some are very round, firm and easy to remove. They are found to have more dense vascular patterns and are called angiolipomas. Some are more crab claw like, growing into surrounding tissue. The claws need to be removed, or early recurrence will occur. A very rare problem is change into a cancerous lipoma called lipangiosarcoma. For that reason, they should be individually evaluated by pathology. Liposuction is rarely used, but can be the best answer for cosmetically sensitive areas. As a plastic surgeon in Wi, I have removed up to 160 lipomas in a single procedure. Skin is rarely, if ever removed for benign disease.
  • Reply
Northern,

I know it will very from Dr to Dr, but how much did it cost you to have 75 lipomas removed at one time?

I just spent $900+ for just 3 lipomas removed.

Thanks.
  • Reply
Hi Northern, thanks a lot for your detailed reply.
I wish to ask more doubts on this issue to you later.
Thank you
  • Reply
Hi Grandma Sylvia ,
thanks for your information. i will check on it and discuss later. Thanks for your kindness
  • Reply