It's been a very long time since I have posted on the site. I have been through a year long journey trying to find the treatment for myself because we moved.
I have been dealing with adhesion for 12 years. That was the first time a doctor said that word. He figured I had been suffering from endometriosis/adhesions for far longer than that. Previously treatment had been pretty easy to come by. I never had to much trouble finding a doctor to help with the pain, do an ultrasound or other test. When we moved to Texas 4 years ago I had an little harder time but was able to work my way through it. I had two surgeries down there and after the last it was recommended that I only have surgery if my life was in jeprody. Nine months before we moved I was in the most ideal situation I could be in. I had great doctors, including a Pain Management doctor and a Physical Therpapist that practiced myofacial release. I wasn't back to 100% but I felt good. If you have never had myofacial release done I highly recommend it.
I have to say that I had a Pain Management doctor who put me through nerve blocks, spinal injections and a trial for a spinal cord stimulator. All of these did not work. Two different times I ended up in the hospital because a nerve block aggravated nerve so badly I could not handle the pain. Each time I was in the hospital for 4 days. Even after this, the 2nd time, he wanted to try again. My husband tried referred to him as Dr. Frankenstein. The same doctor threw a fit when I would not have the spinal cord simulator permenatly implanted. It didn't work for me in the trial. This was after spending two, 8 hour days with company representatives to try to dial in the right frequency to help me with my pain. After refusing I was told by a nurse that I was being non compliant. I was told they would give me suboxone to taper down but I was no longer their patient. I went to my medical doctor who said that I shouldn't fill the suboxone. The insurance companies look at you like a drug addict and it will stick with you, not in a good way. He wrote me a script for my meds and we found a new PM.
I moved to Wichita to be with my husband after a 18 month seperation because of work. I thought I could assemble my "Team" pretty easily. WRONG! The laws are different here. (We only recently found this out, afte a year). Most doctors here cannot write a script for more than Hydrocodone. Pain Management doctors, that don't deal with injections, are few and they don't take many new patients. Physical Therapist don't know or do myofacial release therapy. My last physical therapist only worked on my back because she felt that my nerves were associated to my adhesions. I have a great family doctor who does her best to take care of me and doesn't treat me like I'm a nut. The biggest thing I learned is that if you move you need to check out state laws. Not all states are the same.
We will be moving back to the Seattle-Tacoma area soon. This is my home town. I am so relieved. The medical community is top notch. Also, alternative health practices top notch. I feel that even though my adhesions extreme, I will find the right people to treat me.
Like someone said, you need to keep moving forward. If you don't feel good about what a doctor says, find another. Tell people you suffer from adhesions. When I started doing this, I started to find that someone had a friend or family member who suffers. They also were able to give me names of doctors. You always have to remember that the doctors work for you, you pay them. Doctors are not gods. You need to take your health in your own hands.
I was recently admitted to the hospital because of pain. They found a partial blockage so they wanted to keep me to see how that went. During this time, and since I wasn't eating, they decided to do a colonoscopy. They found that I have cancerous polyps, that were removed. I met with a oncologist who recommended chemo/radiation. He also thought that they should take the sections out. I said no to all. After we move I will have another colonoscopy to see whats happening and have treatment there.
Everyone take care of yourself. Even when it hurts, move around. Watch your diet and drink lots of fluids.
-- Alta