POLL: Do you have pain after limb salvage surgery?

[Mary]

This poll will give others an idea of the range of experiences survivors have after limb salvage surgery. You can also add your comments or explanation about your situation in a reply to this message.

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[Cliff]

Believe it or not I didn't have surgury.  My tumor had consumed the L2 vertebra.  There was no way to excise a 2-5cm margin around the vertebra without cutting me in half and paralyzing me.  So Dr. Meyers (MSKCC) took a shot at intensive chemotherapy and IMRT radiation treatment.  I got blasted by both and evidently it worked because I'm good.  He made the right choice and I am very, very thankful for it. 

To give some perspective - my doctor in Portland had recommended surgery (which was the classic solution to the problem).  It would have warranted removal of the L2 vertebra, putting in a spacer, and a 5 vertebra spinal fusion during the course of treatment.  I don't think I ever would have recovered.  The surgery would have been so invasive that I would likely be damaged and in severe pain for the rest of my life.  This was the primary reason for going to MSKCC to see Dr. Meyers and Dr. Boland to get a second opinion.

As it is I'm doing fine. The muscles are a bit sensitive, but besides that I can do just about everything normal except for lift heavy objects and run.

[Karen_02]

The pain since the surgery is worse that it was before.  If I had of known the pain I would be in I would never have had the surgery.  It affects me every day.  The pain makes me very tired and weak. The doctors do not know why I am still in pain.  They think that it is nerve damage and say I will have to live with this.  They have told me to maintain daily with pain meds.  I worry that they will do damage to my organs but the Doctors say the dose I am on should be ok. 

[Cathy]

Karen 02,

I'm sorry you are having so much pain.  I ended up going to a pain clinic where they are not afraid to try different approaches and different drugs to help you.  My pain level is now tolerable.  The first time I went to the pain clinic, they asked me what I would want to be on and I said, "morphine." And, they gave it to me!  I had to quit taking it though months later as it upset my stomach.  Now, I have several drugs to choose from.  My ortho onc and others in the medical field do not think too highly of them.  They call it "legalized drug abuse."  It's obvious they have never been in chronic pain.  So, Karen, I hope you'll look into it.  I pray that you will get some relief.

Always,
Cathy

[Cari]

I think this is a huge guessing game for a lot of our doctors.  They think the pain should be minimal, but for a lot of us it is nothing close to minimal.  UGH  PAIN SUCKS!!!