United Brachial Plexus Network, Inc.

I have never experienced such pain in my life. I literally want to cut off my arm at the shoulder. I went in August 6 for C5-6 fusion and came out with a solid fusion but loss of range in the left arm and shoulder which turned shortly into the most excruciating pain I've ever had. Dialaudid and oxycontine don't touch it. What is everyone else using and how long does the pain last?

Wow I'm sorry you're just experiencing this pain.
As I see it you really have two options, cut it off and take your chances with the phantom pain(now in this case we really haven't heard much from those who chose this road since having that procedure)and second, you really have to get in touch with a pain management specialist, typically a Neurologist, and work on developing a course of action. In my case it took about 9 or 10 months until we finally hit on something that I could wrap my head around and not the other way. It will take time and patience and it may very well hurt like hell. But in the end you'll have a better understanding of just how bad this thing sucks.
You are just down the road apiece so call me and I'll tell you what kind of medications I've been taking for the better(worst) part of two years.
Scott

I know exactly what you mean about wanting to just cut the arm off, I've been there alot of times, sometimes it get so bad your eyes just roll back in your head and you can't even breath or move, I often think of it as being tortured, except when your being tortured they usually take a break, this torture takes no break. I've been as high as 100mg of Oxycontin 3 times a day, but decided to medically detox about 2 years ago to help bring my tolerance back down, I started back at 40mg twice a day, I'm now back up to 80mg twice a day, this tends to be the problem with long term opiate use unfortunately, but as of now it's all I've found that helps, and there are days when even the opiates don't help.

Thanks so muvh for your reply. How can we get in touch. Are you allowed to give telephone numbers on this site? For almost three weeks now, i'm just suicidal with the pain issues. I'm fortunate I guess in that I still have my fingers. My paralysis is bilateral tho only 50% in right arm and 100% in left arm. My paralysis is from the shoulder to elbow in both arms. What about you? How did your injury occur? I've never heard of BPI until this happened. I just don't know how long I can take it. Plus, the pain management that my neurosurgeon recommended cant' even see me for six weeks. amazing! Gonna get on the horn Tuesday and start raising hell until someone gets me in. Have even considered asking for a drug induced coma until some of this passes, I just can't stand it. Suzanne Sommer. Thanks Scott I really appreciate knowing that there's someone local who can relate to this pain. My boyfriend is trying to be helpful and supportive but no one can understand the extent of this pain unless they've been there. Ya know?

Thanks so much Carol. How did your injury occur? Is there anything positive? I'm just at wit's end, being new to the "scene." I've never hurt so badly in my life and am just at the beginning as far as work-related scares, financial I mean. I'm just overwhelmed with my inabilities, and then to deal with it all in excruciating pain is almost unbearable. Have considered myself tough until now! Suzanne

Suzanne,

You can find a lot of info on this site by doing a search (medication, drugs, pain?).

I personally found nortriptyline to be a huge help. I was on it for about 8 years with practically no side effects. It takes a week or 2 to build up enough in your system so you'll need something else in the meantime.

Now that my pain has lessened I take Lyrica when I need something, and sometimes muscle relaxants when the pain seems to be stress related. It seems to help with the spasms.

I'm glad you're working hard to get in with a pain specialist. Make sure you don't give up if the first thing doesn't work--everybody is different and has to find the right combination of things that work for them.

Hi Suzanne,
I'm so sorry to hear about the pain you are going through. I know all too well just how excruciating it can be. Feel free to look at my Profile. It will tell you about my accident.

Pain is something I know all too well. I have tried different drugs to try to help with the pain. I will give you the list I’m on now that is helping. Daytime is not bad but, my arm HATES evenings. I take Dilaudid to try to get the pain under control.
Methadone 10 mg 3 xs’s
Tizanidine 4 mg 3x’s
Baclofen 10 mg 3x’s
Lyrica 100 mg 4x’s
Furosemide 40 mg 1x
Dilaudid 4 mg as needed

I understand the frustration of not being able to get into Pain Management now but make and keep the appointment. You need them. Mine finally have me on a combination of drugs that help with the severe spasms and pain. It takes time and patience for them to find the right combination for you. They can only change one drug at a time and give your body a chance to see if it works. If they change more than one drug, they won’t know what is working and what is not.

My accident was 1/2/07. I have had several surgeries. The nerve graft was done 7/12/07. Nerves heal an inch a month. It was not until March 2008 that it was known the nerve graft failed. I am now going to have MT (Muscle Transfer) Oct 7, 2008. It is a 12 – 14 hour surgery. Muscle will be taken from my leg and put in my arm. It is a 2 part procedure. Part 2 is 3 months later. It will be 4 – 10 months before movement is expected.

June 28 my Pain management Team tried SCS (Spinal Cord Stimulation) they could not due the procedure because I have Spinal Canal Stenosis. I am having MCT (Motor Cortex Stimulation) Sept 11. This is to relieve some of the pain I have. I’m very hopeful these surgeries work.

I’m sorry you had to join this group however; you will find a lot of information and suggestions to help you. There are a lot of great people here.
Janelle

Hi Suzanne. I am so sorry that you are experiencing this amount of pain. I know it sucks. I'm tempted to come over and share my meds with you. Honestly. I've reached a stage where I can miss some of my doses. Trust me my arm lets me know when I miss and depending on the time of day I can stretch it out until the next dose.
My recipe is as follows;
Amitriptyline 100mg 1x a day
Carisoprodol 30mg 2x a day
Hydrocodone 5mg 4x a day(each w/500mg Acetaminocin)
Gabapentin 1300mg 3x a day
Methadone 50mg 2x a day
Omeprazole 20mg 1x a day
Temazepam 30mg 1x a day
I take the Omeprazole in the morning. It helps tolerate the intake of these meds and seems to work.
I take the Amitriptyline,Temazepam, 1-Carisoprodol and 1-Hydrocodone at night when I go to bed. And I sleep deep.
I credit the Temazepam mostly for that.
The rest I take over the coarse of the day.
Nothing beats some good distraction though and you'll find many here who will vouch for that.
I truly wish you the best. If I can do anything for you let me know. I'd gladly meet you and your boyfriend. You're not far away.
Scott
Ps Listn to people like Janelle, God bless her, she's been down the road you're on hard. She knows of what she speaks whereas I mostly ramble.


Message was edited by: swhite1


Message was edited by: swhite1