I am so glad to have found these boards because I've been going through this pain and frustration pretty much alone except for the help and support of my husband plus 4 of our 7 kids that still live at home. I will try and explain what's going on without writing a book. So, here it goes....
In May 2007 I had surgery to fuse S1 - F4 vertebrae and replace the 2 discs at S1-F5 and F5 and F4 with artificial bone material. This surgery was completely done through my abdomen; I have no incisions in my back. My recovery took a good 6 months before I could do normal activities and 2 years before the artificial bone material was completely healed. Unfortunately my back pain did not go away. I continued to see my surgeon to see what was wrong but after 1 year of more tests, physical therapy (that made my pain worse) and consultations with other drs my surgeon said he was discharging me from his care because he felt that I needed more surgery to fix the vertebrae and discs above because of my disc degeneration, spinal stenosis and other diagnosis I had and I did not want to jump into another surgery so quick. I could not function with my back pain so my general doc referred me to a pain doc who used more natural ways of managing pain then just drugs. I have been seeing my pain doc since 2009 and in that time I've done prolotherapy, tens therapy, massage, disc decompression and of course narcotic pain meds.
After I had been seeing my pain doc a year she said that she believed my si joints were the cause of most of my pain. My hips were not alligned right, I could not sit for long periods, I could not stand or walk for any length of time and when she did the manipulations to check for si joint pain I came off the table it hurt so bad. Last November my pain was getting worse and some of that could be due to my new job where I was standing and lifting a lot. My pain dr said that my si joints were not going to get better on their own and she said one day I will probably be unable to walk and be in much pain. In January I flew from KY where I live to CA where my mom lives to visit for 10 days. The flights were horrible as they always are but this time I had to use a wheelchair because I could not walk from gate to gate.
The day I was to come home I woke up and rolled on my side to push myself upright so I could get out of bed. My back hurt more than normal and when I went to stand up a sharp pain went through my buttocks, into my hip and groin area and down the outside of both my legs. I fell to the floor unable to sit upright and unable to stand or walk. I screamed for my mom; my pain was so bad I immediately started crying. I had all 7 of my children with NO pain meds at all so this gives you an idea of the pain level; I'm sure some of you know this kind of pain. Needless to say I had to cancel my flight and we went to urgent care but they sent me to the ER. The doc at the er said they could not find what was wrong, they did believe me because my heartrate was 130 and my blood pressure was 183/103 both indicating I was in pain. They did a cat scan but she only did my lower lumbar and did not really look at my si joints. I was referred to a dr there and had an appt in 4 days.
While in CA I was seeing a dr who specialized in spinal surgery. I did an MRI, diagnostic injections in my si joint, and he had me on better pain meds than the hydrocodone I had been on for 5 years. My first visit to see him he told me that I needed to be in a wheelchair because I could barely walk the pain was so bad and my legs shook from the pain. After the injections relieved my pain by 75% for 2 days he told me I needed si joint fusion surgery. He told me there would be no way for me to fly home because of my pain so I chose to do the surgery there and then go home after. We set the surgery date but 3 days before I was scheduled for surgery we got word that my insurance co denied surgery because it was experimental and investigational. While in CA we appealed, my dr did a peer to peer review, and we appealed it one more time. Every appeal was denied so my mom packed her car for a cross country trip from CA to KY because I could not fly. It was painful but she did her best to make me feel comfy and we took our time getting me home. I saw my pain doc first day I was home and she put me on 2 very potent pain meds, muscle relaxer, blood pressure med for my ver high bp and a depression med because I was feeling hopeless.
I have been home since March 17 and we are still fighting insurance to approve the surgeries I need to be able to walk again and get my life back. I am seeing an orthopedic surgeon in Lexington, KY who has done studies for IFuse and was one of the first doctors to use this minimally invasive technique to fuse the si joints. He has had me do another diagnostic injection for both joints with the same result as what I had in CA. He has done a peer review and a written appeal to my insurance co and we have done 3 appeals. He had me do another CT Scan August 20 and is doing another written appeal after getting the results from that scan. I have bone spurs along both joints, I have vacuum phenomenon, the right joint is the farthest apart he has ever seen, the left side which hurts worse is so messed up and he said that this ct scan looks worse than the one done in CA. He said that the er doc in CA just did not know to look at my si joint in the ct scan or what to look for.
I am so depressed and feel hopeless. My surgeon said medicare is supposed to approve this surgery next year so all other insurance co will follow but I don't know that I can wait that long. I still cannot walk and use my wheelchair in my house just to get to the bathroom. I cannot sit upright for longer than 30 minutes. So, I stay on a futon that is kept in the sofa position so I have the back part to support me when I'm laying on my side. I lay down all day and do not go anywhere unless it is to a dr appt cuz I am usually in so much pain for a couple of days after. I have to have help to shower. I take oxycontin cr 30mg 2 times a day and oxycodone 20 mg 2 times a day for breakthru pain and still I have pain that is a 7-8 on a 10pt scale. I am sick from the pain sometimes that I throw up. We have no help here at all since we have only lived here 2 years so I am home alone all day most days until 4 when my boys get home. I lay and watch tv and the boys bring me a couple of dr peppers to drink and a couple things to eat until they get home at 4.
Is or has anyone else gone thru being denied the surgery? We are considering getting a lawyer if this written appeal that my surgeon sent in results in our 7 denial. I'm so desperate and find myself wishing that I could just sleep but I hardly sleep due to the pain. I'm considering going to the emergency room now because my pain is so bad I'm crying as I type this but I'm afraid they will just think I'm seeking drugs. I sure could use some iv pain meds. Sorry this got so long. I want to do more than just exist right now.
Minor scoliosis, fusion of S1-L5-L4, discs replaced at L4/L5 and L5/S1 2007, spinal stenosis, degenerative disc disease, left and right SI Joint dysfunction with fractures along illiac crest, and vacuum phenomenon.