Are there really any good options?

I know you are all sick of reading about this; I'm sick of living it. Chronic pain is impossible! How am I going to live this way? I literally can't be on my feet for more than two hours or so without starting some really intense pain. It wakes me up at least 3 times a night. Treatment options all look grim because of having gone through NF. No pain killers help. My four children need me. I can hardly ever even walk my dogie Emma anymore, I am always asking Dov or Robert to do it. I *love* going on walks with her, but my HIP HURTS! I want to walk my dog! I used to play with her at the park, but it's not fun anymore. I can't.

What about trips with the family? What about long days out doing activities and picnics this summer? Sitting on a blanket on the ground? How am I going to be able to live a normal life? I'm only 41 here!

This disease isn't static, it is degenerative. Something has to be done, or I'll lose my hip joint completely. I already feel that it has gotten worse, just over a few months. I almost can't drive, but I grit my teeth and do it, I need my freedom. What I need is an automatic car, actually.

Anyway, I wrote out all the treatment options and the problems with them. It feels hopeless when you see it altogether.

Open surgery: Treatment of choice. Get into hip joint, dislocate it, remove all the synovial stuff which is effected by the tumor & surrounding synovial ducts, put hip joint back together and have lots of PT to heal.

won't work for me because of 1) the danger of infection because of the possibility of colonized strep A in the hip joint itself, and 2) my orthopedic oncologist believes my hip will not recover from dislocation because of the NF surgery involving muscle & ligament, and all the fascia that was removed. There is also a lot of scar tissue all around it. He believes that there won't be enough to support a dislocated hip to heal.

Arthroscopic surgery: like laparoscopic, makes holes near the joint to get in, takes out synovial fluid, ducts, and tumor.

since my tumor is really in the middle of the hip joint itself, the success rate of this type of surgery is limited, and recurrence rate is high. Also, the standard fear of infection, but somehow that worries me less. I would be on prophylactic antibiotics (Vancomycin), so I think I'd be covered. Gotta discuss that with Giladi & Bikels (ID & ortho onc. doctors).

Radiation injection treatments to reduce the tumor: Radiation gets shot right into the hip joint to reduce the synovial tumor and inflammation surrounding it.

Bad choice for me because radiation is known to compromise the lymphatic system in the place the radiation is directed, and my lymphatic system is starting out already compromised. I already have lymph edema problems and drainage problems in my thigh.

Not many other choices, except the very experimental cancer drug ("Imatinib") that has only been used *4* times for PVNS. There is the guy in France who has used it on four PVNS patients. It is anecdotal, but he has had success with it. I am doubtful if my orthopedic oncologist will go for it because there is no empirical data. I could probably go to France to the guy who does the study, my husband already got in touch with him and he said he feels I am a good candidate. BUT, I leave my husband and kids for however long, to try a drug that may work, or it may not. If not, since this disease is degenerative (destroys cartilage first and then bone), I am that much more time advanced with this disease, and more cartilage is destroyed, and I am in a worse position that I am today.

Chronic pain causes depression, and that is where I am. It feels so hopeless. Why? Wasn't NF enough? WHY!? Has anyone in the universe ever had NF and PVNS?

OK, pity party set to words. I'll try to move on, get myself out it. It isn't a good place to be.
Looking forward to the healing qualities of Shabbat.