Hijacking your response to Bj. I will be having a quiet day with my dog, so I hope you will be having a lovely Thanksgiving with your cat. At least, you don't have to put your pet outside, as much as I seem to each day. I kid you not...9 times yesterday!
Thanks for the update and explaining surgical intervention is out of the question.
I wish I had something to say which would help you, unfortunately, I can see the complexity of your situation. Being in pain, makes traveling long distances to a physician on a regular basis, very difficult or impossible for many patients.
The only thing I can do, is to encourage you to keep in contact with the people at this site, because some people come and go due to their pain problem. Sometimes, even the next day or week, someone who missed your initial information may have a good idea for you. Also, I have had many days when I felt very alone and in terrible pain and people at this site reached out to me. This is a wonderful place to find support.
I have a SCS and it is not helpful, but my problem is completely different than yours. The one issue I will caution you about, is my trial was only minimally helpful, but the surgeon wanted me to try the implant. I had it done and it never really helped. I recently had the battery changed and I find having to recharge the darn thing is an issue for me. I actually liked the older model better and cannot believe they think this was an improvement. It was a total waste of money.
My words are not meant to discourage you. Just find out all the facts and get answers to your questions. I am just tired of hearing what sounds like a sales pitch and not getting a true picture. They cost a small fortune, but don't give you the DVD of how you need to recharge the thing until AFTER the surgery.
Prior to my SCS, I met a woman in the PM clinic who suffered from leg pain. She had great success with her implant and encouraged me to get one. They appear to help some people.
Bj recommended looking into a pump. I am not sure how disability works, so I was wondering if you tried the SCS and it did not work, if they would then pay for a pump. I would check into this issue. The problem with p.o. meds, is being metabolized in the liver and excreated via the kidneys, they cause issues for both organs.
If you check back, some people at this site have SCS and some have the pain pump. You may get some good info hearing from them.View Thread
Read through everything and was very interested in getting in touch with you. I too, suffer from severe S.I. joint pain. This has been going on for 20 years. Initially, I was injured 25 years ago and had three back surgeries. The S.I. joint pain is far worse than the back pain I had prior to any surgical intervention.
I live in a part of the country with very good health care, but have run into a brick wall trying to find someone, anyone, who can effectively treat the pain. Over a month ago, my PM doc could not understand why I cried in his office. He was disgusted with me and asked me FOUR times why I was in tears. Four times I told him I was frustrated. I had been on my medication for too long and the efficacy was zero. I was the one who suggested a med change and he had the nerve to be digusted with me!
I feel so alone and isolated having this problem. If you tell people S.I. joint pain is worse than back pain, they are irritated with you for claiming your pain is worse. I have been saying this to warn people of the possible downside of spinal fusion surgery. I was told spine surgery did not work in 90% of people (which is a falsehood), and never told it could make me so much worse.
The cold weather has set in and I am miserable with S.I. joint pain on the right and left and bilateral leg pain. Every single day I wish I had never let a surgeon touch my back.