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.
I had my anterior fusion on December 18 and was discharged late on December 23rd. Felt pretty crummy for Christmas, but as my family could only think of having Christmas without me and sending a plate over, I ended up making Christmas dinner for my entire family. (clearly people don't understand back pain)
By the first week of January I felt better, so I think you have a good game plan. You will hopefully feel good enough to enjoy most of the holiday season.
I am so sorry to hear what you have been going through for YEARS.
Unfortunately, I am unfamiliar with the course of treatment for pain patients who cannot take opiates, so please, have patience with my ignorance.
Dave suggested doing research and I wonder if there is a group somewhere in the country which deals with your issues with pain medication. I am completely impressed with your strength, since I hardly make it through life... and I am able to take opiates.
I don't see any mention of surgery. What suggestions have been made other than p.o. pain meds? .Also, are you able to take an increased dose of Neurontin? I think you can take up to 3600mg per day. Not sure, since I haven't checked this lately.
I remember several years ago, CBS news did a segment on the evening news about a hospital in (I think San Francisco) who were helping patients who were struggling in other parts of the country. At the time, they were willing to read your MRI/CT or whatever you had and let you know if they could help you. This was free of charge.
I wish I could be of some help to you. Do not worry about writing your issues on this site, because I complain longer and more than EVERYONE.
Keep in touch and let people know how you are doing.View Thread
Sounds like a big supportive family! I too love Christmas decorating and miss having a home I can decorate. So, I understand the three trees and am looking forward to seeing the pictures, especially the PINK tree. Please, do post the pictures.View Thread
Can't believe you were able to read through all my errors. I really need to quit my lazy bad habit of refusing to proofread. My husband has been working 10 hour night shifts for the last 3 months and I have my sleep schedule upside down. So, I am sleep deprived more than my usual back pain sleep disturbed cycle.
I had a pain pump for my anterior fusion and felt like I was in a hospital without a pharmacy. They had me sign a form stating I would pay for all pain medication which had been formulated for me and I did not use, (if the pump didn't work and I wanted it discontinued). My friends who are CRNA's said they are big money makers for the hospital. When I complained about how much pain I was in post op, (at my surgeons office a few weeks after surgery) I found out HE never ordered the pain pump and did not believe they were effective for pain relief.
When I was crying in the hospital, the residents doing rounds told me to just keep pushing the button. The thing is, the way they program the darn thing makes all the difference. Make sure they explain how the pump is programed. My husband wasn't with me, so I didn't have an advocate to fight for me. Sure wish I had Shirley McLaine yelling at the nursing station for me, like she did in the movies.
Your first experience wasn't a good one. Who wants to be so snowed, their CNS depressed to the point they are not able to take deep breaths post op. Very good way to end up with a post op temp and respiratory issues. I hope the pump ends up being a good happy medium for you.
Having your husband with you this time will make ALL THE DIFFERENCE IN THE WORLD. Every patient needs at least one good advocate fighting for them in the hospital. When I was alone the 5 days I was in (the week before Christmas), I knew not having my husband to fight for me made me vulnerable to the residents who were taking the path of least resistance.
Many of us seem to have horror stories to tell. I don't want to put a negative spin on things. I simply want to give you a heads up so you have as much knowledge as possible.
Hope your upcoming holidays will be wonderful and you have a bit of enjoyment before you recovery.
Looks like everything is in order for your surgery. I, along with others will be thinking of you and keeping you and keeping you in my prayers.
I am sure you know this, but make sure you have a private room. Never want to have surgery (especially spine surgery) AND A ROOMEMATE. Chances for contamination are too high and you never know the diagnosis (or multiple dx) of the other patient.
Being nosy! Is the doc going to have you bank blood?
You sound like such a strong person with a positive attitude. Your husband sounds like someone who will take great care of you during recovery.