Complications following limb salvage surgery

finney

I wanted to post and see if others have the same problems that I experience and also to see if anyone has any advice to provide. I had limb salvage surgery almost a year ago now. The surgeon removed a large part of one of my quad muscles in the right thigh. The surgery was done after radiation treatments, and also after a first surgery that was to remove the mass prior to determining the mass was a sarcoma. My observations

- My leg gets sore when I am inactive for a long time and try and get up and walk
- There is almost always some small areas of swelling just under the skin, possibly lymph is what I am guessing
- Pain would be at a 3-4 on a 10 scale when it hurts the most
- Area is normally warmer than surrounding area and the skin feels hard and stiff (maybe due to the radiation)
- Not able to fully bend my knee completely, cannot kneel without any discomfort
- Hurts and is achy if driving for any period greater than 1 hour

Wanted to throw out there my experience. I have a retractable cane that I carry with me just in case it is needed. There are days when I use my cane to help me get around, it does make a huge difference when my leg is hurting.

Anyone that has also had this type of surgery??

lfrankva

Limb Salvage
I had a shoulder replacement done after the removal of a large (>12cm) liposarcoma. I had the muscles located on the scapula along with part of the deltoid removed. I also had muscle flap surgery done. I'm only 6 months out of surgery but have similar issues. I cannot sleep on my right shoulder, in the morning I am stiff and sore. If I do too much the next day I am sore and I ache. I think this is all normal. I am still undergoing physical therapy. The skin that was retracted during the surgery is still very numb, but I am slowly getting some sensation back. I would ask the doctor if you think any of this is abnormal.

bevschu

I saw your post and wanted to respond. I had an eggplant size liposarcoma removed from my left calf, with a portion of the soleus muscle also removed when resected. I also went thru radiation therapy afterwards. This was 2-1/2 years ago . The lasting effects are similar to yours.

I do get very stiff with inactivity and have a limp. I sometimes still use a cane. Even after 2-1/2 years, I still experience heat in the area that has been radiated and the radiated area is hard and somewhat painful. The hardness is due to fibrotic scaring of the inner tissues as a result of damage from the radiation. I have discussed this with my Drs. and all say there is nothing that can be done about eleviating the hardness or pain. Nerve damage from the "cutting and cooking". And the surgery and radiation therapy have compromised the lymph system, for sure.

I have found that having a periodic series of lymph treatments has helped me alot. And if you can find someone who does lymph therapy using the therapeutic tool called the Lymphstar Pro, (it is designed to assist fluid movement in a sluggish lymph system) I highly recommend it.

hop-a-long

Amputation vs limb salvage surgery
I recently had surgery to remove what was believed to be a fatty mass on my lower right leg only to find out a week later that it is a high grade myxofibrosarcoma. The doctor is now telling me that I have two options: 1) amputation followed by chemo & radiation; or 2) limb salvage surgery and all that goes with that (taking of muscle & skin from one area to the area the 2nd surgery will be performed).

The doctor says that option 2 will require more time to recover and be able to go back to work. Option 1 does not provide a guarantee that the cancer has not spread beyond the area to be amputated. Because I can go back to work sooner and the statistical chance of the cancer reoccurring in the same spot is zero (ha) I'm seriously considering this option. But, my wife wants me to take option 2 even though I'll have to contend with the same complications you guys have mentioned. She'll probably have to go back to work at least until I'm able to go back to work since this option will probably require me to use all my sick leave before I'm healed.

Are you guys happy with your decisions (amputation vs limb salvage)?

finney

hop-a-long said:

Amputation vs limb salvage surgery
I recently had surgery to remove what was believed to be a fatty mass on my lower right leg only to find out a week later that it is a high grade myxofibrosarcoma. The doctor is now telling me that I have two options: 1) amputation followed by chemo & radiation; or 2) limb salvage surgery and all that goes with that (taking of muscle & skin from one area to the area the 2nd surgery will be performed).

The doctor says that option 2 will require more time to recover and be able to go back to work. Option 1 does not provide a guarantee that the cancer has not spread beyond the area to be amputated. Because I can go back to work sooner and the statistical chance of the cancer reoccurring in the same spot is zero (ha) I'm seriously considering this option. But, my wife wants me to take option 2 even though I'll have to contend with the same complications you guys have mentioned. She'll probably have to go back to work at least until I'm able to go back to work since this option will probably require me to use all my sick leave before I'm healed.

Are you guys happy with your decisions (amputation vs limb salvage)?

Posting Update
I am doing much better than I was when I originally posted. The physical therapy was the absolute key for me to begin exercising. I joined a fitness club and work towards riding the stationary bike for an hour three times a week. This has done wonders for my leg muscles and is what has helped me to regain some strength back. I still have stiffness and some dull pain and tightness in the area, but I suspect this will always be the case for me. I do think that if I did not exercise my leg then I would be in a bad spot. I do not regret having the limb salvage surgery vs amputation or some other treatment. I hope all is well with you both.

Wyndham

finney said:

Posting Update
I am doing much better than I was when I originally posted. The physical therapy was the absolute key for me to begin exercising. I joined a fitness club and work towards riding the stationary bike for an hour three times a week. This has done wonders for my leg muscles and is what has helped me to regain some strength back. I still have stiffness and some dull pain and tightness in the area, but I suspect this will always be the case for me. I do think that if I did not exercise my leg then I would be in a bad spot. I do not regret having the limb salvage surgery vs amputation or some other treatment. I hope all is well with you both.

Life After Limb Salvage Surgery
Finney, great to hear things are going so much better. I've had 2 myxofibrosarcomas removed from my left arm (1st low grade, 2nd high grade and into muscle). It's now 13 months since my 5th surgery and 6 weeks of radiation and it has been a battle. The spare parts needed to reconstruct the arm where taken from my left leg meaning two areas to heal and get moving again. Like you, I make the effort to keep things moving. I've gone form not being able to do much at all and in constant discomfort, to back to camping and water skiing. My leg is pretty much healed. The arm will be stiff and sore whether I sit on the couch all day or go out and be active.....I choose active. I find that sleep time is the worst, especially when rolling over during the night. With everything that has happened and the every day aches and pains, I'm very grateful that I still have my arm. If there is another reoccurence they have said that it will mean a full amputation. I choose limb salvage if possible. I know some don't get to choose. Keep well.

JakeSingsAlso

Limb Salvage
Yup. I had the same surgery in Jan. Im an ameture paddle board surfer and I was wondering if you think that a knee pad would work. Also, are you having some hypo/hypersensitivity? Mostly in the shin? For me they replaced most of my knee,, 18 CM of feamur, and a rod down my tibia. Also were you awake for your biopsy?

JacquesLeRoux

Same operation

Hello Jake,

I have had pretty much the same done with my Right knee/leg.

Lost 2 Quad muscles and 16cm of bone. If you are still on this page it would love to talk to you. Its been 2 years since my operation and it feels I am going backwards. Painlevel id averages around 5 with painkillers.

 

Hope to talk soon.

MLL

fibromyxoid sarcoma

Hello 

I am MLL, my husband has been diagnosed fibromyxoid sarcoma based on the biopsy on 24 Jan 2018 & the doctor suggested amputation would be the only option if the cancer has not spread yet.  He will have PETscan tomorrow to find out.  But he did not accept amputatiom becasue we predict there is no quality of life at all if we go into that path. He has 3 big lumps, one on the left side, one in the buttock,(gluteal) , one in the side of the thigh (vastus lateralis) and one in the back of the thigh (hamstring).  The buttock feels heat all the time.  The lateral side feels hard, the back side aching, particular at night time.  He is not able to eat & sleep properly. He is 62 and is too old to get a good chance of recovery from amputation?  This news made my world upside down.  I am not able to hold my tears whenever I think about it.  I feel very sad, stress & helpless!

 

AmyKB

JacquesLeRoux said:

Same operation

Hello Jake,

I have had pretty much the same done with my Right knee/leg.

Lost 2 Quad muscles and 16cm of bone. If you are still on this page it would love to talk to you. Its been 2 years since my operation and it feels I am going backwards. Painlevel id averages around 5 with painkillers.

 

Hope to talk soon.

Hi Jacques. I’m Amy and I had

Hi Jacques. I’m Amy and I had limb salvage surgery to my right knee and tibia in November 2017. I too am struggling with knee bending. Haven’t yet got 90 degrees even after physiotherapy and one MUGA ! Suffer from stiffness even now ! What excercises are you doing and what is your progress like? I’m still struggling a lot.

looking forward to your response. 

Thanks, 

amy