Is surgery for enchondromas necessary?

[undecided212]

I am 27 years old and have been experiencing general body pain for about 15 years now, but doctors never paid much attention when they could not find anything wrong. Sometimes when it became bothersome, I used to drink a pain killer and the pain went away. But about 8 months ago, I started getting a different kind of pain in my left hip and later my left knee. Painkillers did not take the pain away and the pain became so bad that I could barely climb stairs and could no longer do any exercise or any kind of sport. I went to the doctor and when they could not find anything on the x-rays of my hip, I went for a bone scan. They did the bone scan and found slight to moderate increased symmetrical radiopharmaceutical uptake in all my large joints. They also found dense osteoblastical activity in the left femur and humerus. I was referred to a well-known orthopedic surgeon and he diagnosed a large cartilage tumor in my left femur and and a smaller one in my left humerus. He ordered MRIs which confirmed the enchondromas. He said that I had to have surgery to remove the enchondroma in my left femur. Apparently he did similar ops on two other patients and it relieved their pain. Someone suggested that I get a second opinion and I then went to a specialist physician who said that I had seronegative rheumatoid arthritis and that it was the cause of my pain, not the enchondroma and that I should not under any circumstances have the surgery. He prescribed DMARDs. Amongst other things I had to take Methotrexate. However, when I took the Methotrexate once a week the pain in my left arm and leg became excruciating. The other side-effects were so bad that I could barely function. When I returned he said that I should continue with the treatment and he prescribed more medication. I am desperate and don't know what I should do. On the one hand I do not want surgery if it is not necessary, but on the other hand the medication is worsening the situation. What would you suggest I do?

[undecided212]

Hi nativecutie

Unfortunately I do not live in America, so I don't know how helpful I can be in helping you find a doctor. But I do understand your frustration. The hardest thing for me was that I go a lot of conflicting opinions. But in my case there were a couple of doctors (and a second radiologist) who seemed genuinely concerned that the tumor might not be an enchondroma, but a chondrosarcoma.They said something to me about the tumor affecting the surrounding bone in a way that an enchondroma does not. (You'll have to excuse me, I cannot recall all the medical jargon they used.)

I really do hope you can find someone to help you.

Regards

[Nativecutie]

I have been dealing with excruciating pain in my left hip from an enchondroma and several large bone cysts. I have been to a few doctors who are blowing off my pain and saying that enchondromas do not hurt.  Now I am at a pain clinic and on opioids to dull the pain. What kind of doctor did your surgery? Are you able to tell us the name? I am in the tristate DC area.  I would love for a doctor to validate this pain and remove this tumor so I can get off medication! I hate it! And what if it is a cancerous lesion.  Was your tumor well defined?  Did it change the bone around it? Any indication that it was a chondrosarcoma rather than an enchondroma?  Mine is located in my uppermost femur. Thank you for any information! God bless!

[undecided212]

Hi tinytina1253

A couple of weeks after the op the test results came back and it turned out that I did not have an enchondroma but a chondrosarcoma. So I am being treated by an orthopedic surgeon who specialises and does research in condrosarcomas. He really knows what he is doing.

I cannot imagine the pain you must be in, and I can just imagine that it is even harder for you having to run around after 7 year old triplets. Unfortunately I do not have much advice, except don't ignore the pain. Consult someone who specialises in the field and whom you can trust so that he/she can help you as soon as possible. In my case the hard part was just finding a doctor who really cared and believed me when I said I was in so much pain.

I really do hope you get referred to a doctor who will be able to help you. Please let me know if you could find a surgeon and how you are holding up.

Regards

[tinytina1253]

what type of dr. did your surgery? i just found out that I have several enchondromas and the pain is HORRIBLE. I have 7 yr old triplets and a 19 yr old and can not do much with them. I am 46 yrs old and can't take this pain anymore. Any advice you have will be helpful. Glad to hear your feeling better. God Bless

[undecided212]

Hi!

I have followed your advice. The third doctor was of the opinion that the enchondroma in my femur could be the major cause of my pain. After some deliberation, I decided to have the tumor in my femur removed surgically (the tumor in my humerus will just be observed) and follow an alternative treatment plan for the arthritis. I am almost completely mobile now and the pain is almost gone.

Thank you!

[S. Kaul, MD]

Hi there!

Well, this would be a difficult question to answer without a clinical evaluation. Either could be correct or both. Well, if I were in a situation like this I would rather seek a third opinion, preferably from an orthopedician ‘and’ a rheumatologist at a university/ teaching hospital, before deciding on a management plan.
Hope this is helpful.

Take care!