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.
Replies (49)
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 !
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!!
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.
Hi Northern -- Welcome to RealSelf. Wow, you have been through a lot. 800?! Is there a reason you've had so many over the years?
If you meant a reason why I have so many Lipomas ? Not that I know of. Other than, through my research, I've found various types and degrees of Lipomatosis. Many of mine are extremely painful which is why I have them removed. On me, apprently, they grow very fast. I can have an area surgically "cleaned" and in a couple days or up to a few months, I may have more in the same area.
I do have family members with similar lipomas but not in the quantities that I have them. Apparently, there are a few people out of many that will get an "outbreak" like I do.
If I hadn't had the surgeries. I know I wouldn't be able to walk and more than likely by now, I wouldnt be here.
I could hardly walk the first time I had a larger surgery (around 1990) and they used a general. I remember waking up and started laughing and crying at the same time because i I had searched to find a doctor to help me and I never thought I would feel that good again. They took our about 75 (about 70 seperate incisions)that day. Because they did it all at once, the relief was very dramatic and quick. I had many staples, but the internal relief was so great that I never needed any pain meidicine. Not even a tylenol or aspirin.
Yes, that's what I meant. Thanks so much for the explanation! That is just a huge amount of lipomas, but like you say, at least you've been able to have the surgeries. I can't imagine what that would be like otherwise.
You're one of the first people outside of myself that I've heard of that has been diagnosed with Dercum's Disease. Many doctors in the U.S. don't even know or have heard of it. Can you tell me how and when you were diagnosed with it? Thank you.