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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.

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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?
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What's a good place around central NJ that can do multiple without charging per each lipoma taken out?
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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.
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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."
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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.
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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!
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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.
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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.
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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.
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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.
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What is the cost billed to insurance for that many lipomas removed? 800 lipomas times $4,585 each would cost $3.6 million.
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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..

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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!
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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
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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.
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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.
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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.
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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.
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Hi Northern, thanks a lot for your detailed reply.
I wish to ask more doubts on this issue to you later.
Thank you
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Hi Grandma Sylvia ,
thanks for your information. i will check on it and discuss later. Thanks for your kindness
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Have you checked into Dercum's Disease? It is a malfunction of the lymph nodes that results in very painful multiple lumps which can occur anywhere on your body that you have fat. The waste lymph produced by the DD fat cells mixes with blood from leaky blood vessels and forms a lump. The lumps just keep getting bigger and when they want a blood supply the send out tentacles that can wrap around nerves or muscles causing great pain. A lot of time they grow in rows or clusters along the pathway of a nerve. It doesn't do any good for the most part to get them removed as they just come back as the lymph is still being created by our cells. If you take one out the hold gets filled with more...many times you end up with more than you started with. The leading researcher on Dercum's Disease is Dr Karen Herbst at the VAMC in San Diego. She can tell from a slide of the lipoma tissue if it is Dercum's Disease. Good Luck
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Hi Northern, after reading you at last i was relieved knowing i wasn't the one suffering from this thing. I'm 19 and i've been having this for 4 years now. Just now i've figured what this is. I have lipoma's all over my body about 50 or so. I hate this thing all over my body(arms,legs,back) and i also can't spend thousands on surgery at present. so i've planned to do surgeries later, but the number is just increasing. Are they operated out separately? Are there stitches or scar marks after operation? Eventhough pain factor is not much for me, i feel pain occasionally. Is there any way to detect through machines like scanning, to make sure detect everything. After removing everything, will they be coming again? Because If so, I don't find any use in removing them expect when pain matters. I'am asking all these questions to you because i want to know more before consulting a doctor. Thanks
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Hi Prashanth. Ask as many questions as you like. I will try to answer them. I do need to make a point that I am not a dr and I am referencing my own personal experiences.

First of all, Some hospitals have plans and grants to cover surgeries like this when needed. There are also state programs to help. If the tumors are growing, don't let them get too big. The bigger they are, the harder it is to take them out and it can be more dangerous or have more side effects such as "empty spots" from where a large tumor was.

I have a BIOPSY on a regular basis meaning that a tumor is sent to pathology to make sure there isn't any cancer. Because there are so many, it is good for me to check that. There are no scans that I know of that will tell you if there is something more serious wrong. Only surgery and pathology can check that (as far as I know) The only treatment I am aware of is surgery.

I have had over 50 taken out many times. There is no guarantee that they won't come back. But please remember, your condition may be different from mine and it is important to have a Dr. evaluate them. I have talked to people that waited too long and the tumors became seriously large and the root system was deep. Some, if left alone, can become extremely large and can attach to internal organs and weave into muscles.
I have lost feeling because of them. Had Involuntary movement, extreme pain, trouble walking and standing, trouble sleeping and sitting, and may more different symptoms that the tumors caused. It all depends on where they are, how big, and how deep they are. Nobody seems to know why they appear or grow the way they do. I do need to point out, that I may take out 70 during the winter but I leave just as many there. The ones causing the most problems are the ones that come out.

The only scars you can see on my are from the most recent incisions. There are stitches or butterfly bandages. I use alot of stitches because of where they are such as stomach or legs where they could stretch open. The scars will fade. I put lotion on them a couple months after I know they have healed. The trick to avoiding the scar is to be careful when healing so the incisions don't come open (thats why i like stitches) Than keep the scars out of the sun !! They will burn and keep that pigmentation. Keep them cover with clothing until healed well enough to use a sun block on them. I use a vitamin E enriched lotion to aid in fading.

The first time you have them removed it can be uncomfortable but don't let it scare you. The first few days after surgery are usually the worst if you have any problems at all and it does get better. it all depends on how many, how big, and where.

If you are feeling pain at all, you need to have them checked. The fact that they are there would warrant that. There are many different variations that can be similar, yet very different in the end result.

I don't mean to scare you but you do need to be aware of your body. I was about your age when I had my first one removed. I started researching and asking questions to find out as much as I could, and I still am asking, and now am 47 years old.

It can be a struggle but life is still good. Every surgery I've had gave me more than it took. It relieved much more pain and discomfort than it caused. You have to do what you feel is right for you. I understand the feeling of being "invaded" in having them all over my body. The fear of where they will be next. I still get angry and frustrated at times and want it to just go away and the fear involved.

When I started dealing with it, there was no internet. I, like many others, were much more isolated and alone. It was frightening thinking we were the only ones. Keep searching and asking questions. ALWAYS ask questions. If a dr won't answer them or you feel brushed off, find a different dr.
Remember, you're not alone in this condition. I have met some wonderful, courageous people through out my years of searching.
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All this is great to read as I have a son who is now 8 but who was diagnosed with lipoma left of the midline left of the tectal plate on his brain. So far that we know of it is only just 1 but it causes headaches, blurry vision, numbness an tingly feelings of left side of body mainly and also dizzy spells. Dr we have been to seem to all run test an than say oh lets wait, why wait lets treat an operate before it causes to much pressure, atleast after all I read an have become to know. Who wants to see anyoe in pain an I hear most time that these lipomas are not cause of headaches or pain an discomfort or migraines but yet as a parent who cares I beg to differ. Question is who knows a good ped neurosurgeon who will treat an or remove the lipoma in california or the U.S. i have had NO LUCK, not giving up hope. I am a determined mother who feels in her heart more people should share their stories to help others and that lipomas should be reviewed by mkedical boards as a more serious matter than a joke. Any feed back be great, thanks!!

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Hi,

First thing you need to do is find an actual surgeon. I do understand the pain. Unfortunately, many of the doctors still say, regardless of what we tell them, that Lipomas are not painful or dangerous.
My surgeon is a general surgeon who does things from simple procedures to cancer treatments, skin grafts, mastectomy, heart, etc...

Search for surgeons in your area and call each one. My process in finding a surgeon took a long time, but that was before the internet existed so things have changed now. Look for surgeons that may have a practice outside your hospital.

Don't give up though. You can ask ahead of time when you call if the surgeon would do that type of surgery.

You do have to be persistent and tell them you need it checked out. If its causing that much pain tell the doctor that says no to send you to a specialist. You have that right.

I have had alot of surgeries and each has given me back control of my body, not taken it away.

I am not a doctor and don't want to steer you in the wrong direction. I do think though, that you need to have it checked out again and if you haven't they should, in the least, make sure it is what they say it is.

If a person can lose a hand and have it sewed back on and work.....why are they saying they can't remove a lipoma ? Get a different doctor.

I was told that surgery is the safest way. Liposuction is not recommended. The roots of the lipoma can attach to veins and doing liposuction could cause serious bleeding problems.

I have had some fairly large tumors taken out and I have talked with people that have had some taken out that were well over baseball size tumors.

You just need to find the right doctor. I have had a few that have left a numb spot here and there, but I am happy the pain is gone !
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