I know EXACTLY how you feel! I am now scheduled for a lumbar fusion at L-5 in July. I had a laminectomy in January and it did not work. I never got rid of the pain. I have been through the ringer as far as myelogram, MRI's, etc. I have been taking 6 Norcos/day (prescribed) and lots of Advil Liqui Gels. I recently started taking the Neurotin my surgeon prescribed for me a few weeks ago. At least I can function with those meds. I am presently not working so that is a blessing cause I know I would be in agony trying to get the hair, makeup and business suit pulled together every morning. Anyway, I let them schedule me for a fusion in July but I have NO INTENTION of doing it. I was way too exhausted to discuss alternatives with my doc while I was in his office last week. So I started taking the Neurontin a week ago and I have to up my dose today to 2 pills. I THINK it is helping and I will take it for the rest of my life if it keeps me from having steel rods and screws in my spine. I also smoke. The success rate of a fusion on a smoker is about 20-30% - not good odds at all. Like you, I have read about too many people having horrible experiences after a fusion. It seems even if they are pain free after the fusion it isn't long before they are experiencing worse pain. I know I have read a few posts here this morning where folks cannot even get off the couch! I am not willing to risk a bad outcome by having a fusion. I'd rather use the medication to control the pain I have now because I know it works for now. I am only 52. Just having the experience of the laminectomy and how it stopped me in my tracks and changed my life was enough for me to say NO to anymore surgery. I felt my lifestyle was taken away from me. I ave cried more over the last 4 months than I have in the last 20 years! So now I just play the cards I have been dealt. I can live with the pain I have now as long as I can use the meds to control it. I am hoping building up the Neurontin in my system will result in my lumbar area nerves settling down and perhaps negating the need for the Norco. When is your surgery scheduled for?
I haven't met with any surgeon yet for the fusion. The surgeon that did my laminectomy in Feb recommended it, said he wasn't qualified to do a 2 level fusion, and wiped his hands clean of me. He treated me like a liar even after the new MRI and prrof their was a new herniated disk etc. Even went as far as to say the person reading it was wrong. Kept showing me WHAT he did in surgery rather than the NEW issues. Anyway, my family doc. had scheduled appoinments (refereals) 2 x for me that have been canceled because my insurance don't cover inpatient and I am told I will need at least 6 days inpatient. I am waiting to get medicaid to go further. Hopefully find out this week. But all I hear is negative about fusions. I am on dilaudid now....they work well, but how long before I am tollerent of these too? And as far as I can research, there is only one more thing more potent. I feel my liver is getting toxic also. I have been on vicodin ES all the way up the levels till the dilaudid now. Been on narcotics since last sept. and I think my liver is feeling them now. Very nervouse, but I can't function without them, but really don't want the surgery either.
You need to force these docs to take the next steps into why your laminectomy didn't work. Get a referral for a mylegram. That is the procedure where they shoot dye into your spine and take pictures to watch the contrast (dye) and how it flows (the procedure does not hurt). Next they will send you into another room to have an CT scan to get films of your spine "lit up" so they can see if there is compression somewhere other than the area where they did the laminectomy. In my case, the dye stopped dead at the bottom of my spine (It is supposed to run down your legs). Anyway, I had my follow up with my surgeon who said he had discussed the blockage with a neuroradioligist. He told me that my cauda equina nerve bundle was gathered up more tightly than normal but that wasn't the reason I still had leg pain. I don't know about that but will do more research. In the meantime I will get ALL my films and reports and have a 2nd or 3rd opinion. I still think my problem is piriformis syndrome (the nerve that passes through your butt muscle). Sometimes they can treat the piriformis syndrome with an injection and sometimes they can do minimumly invasive surgery (same day). These docs are too fast to slam the hardware in patients backs and the fusion results in more pain if it fails. This pain will be for the rest of that patients life - you have read the stories just like I have. They scare the ****out of us. It sounds as if your insurance isn't one of the major ones. I hope you DEMAND the mylegram. As a patient you have rights and responsibilities. It doesn't surprise me that neurosurgeons won't touch spines that have been touched by someone else. They don't want the liability risk nor do they want to have to become you pain management doctor. They also know the success and failure rates of back surgery.
I hope this helps you. One other thing - if you do go in for the fusion make absolutely sure you are 100% honest about the amount of pain meds you have been using. You have built up a tolerance, as have I, and you will probably need a morphine drip for a few days to handle your pain. When I had my laminectomy i was surprised that they only gave me an oxycodone every few hours. There was a time in the middle of the night that I asked the nurse for my med as I was getting really uncomfortable. She said it wasn't time yet. That really made me angry. But instead of getting uptight about it and making the pain worse I just closed my eyes, did some deep breathing and didn't move. I understand why they schedule your meds but i never want to go through that again. Pain isn't something you can "see". Pain is something you "feel". Sometimes caretakers don't understand how patients feel if they haven't been in chronic debilitating pain.
Take care Pofdog!
I was on my way out so I didn't have the time to explain all. It's not that my laminectomy didn't work completely. I told the surgeon that major disabling pain was BETTER after, not gone, and that since surgery, I have pain down BOTH legs instead of one. He treated me like I was lieing to stay on the meds because he knew I was addicted to the percocet before the surgery from my family doc, and he made me wean off before because they are so strong and like the morphine drip if needed, wouldn't work. Then he blamed the pain on opiate withdrawl, at which time I told him I was an ex heroin user from many years ago and know the difference in pains. It took 6 weeks for him to finally order another MRI to rule out diskitus and recurrent herniation. After getting the results of a NEW herniated disk on the same disk, he said the radiologists where I live where bad and wrong (both of them) and that I had no new herniated disk. While looking at it on the film and me pointing it out, while he just got done reading the report, kept swithing to another picture showing me where he had cut. COMPLETELY denieing or even acknlowdging what I was saying, what the new report said, and the NEW herniated disk that was showing in the MRI. I had to finally ask him to STOP and listen, (which he didn't like). I told him listen, I am not here to get pills, I have my own(which he was upset my family doc had me back on percocets because I couldn't walk again by that time without), i said I am not there saying that the new herniation and pain has ANYTHING to do with what he did, I was NOT there to sue him, that I JUST NEEDED HELP. So he said he recomended a 2 level fusion and he was NOT qualified to do it. Washed me of his hands. Even upset my family doc. the surgeon treated me like that and even told him I had NO NEW herniated disk even though the new MRI saw it. Funny thing is, the surgeon at one time looked at me and asked if I wanted the MRI read again and I said yes, it was, and I never heard from him again. You mentioned they all the the sucess rates and they do. AND so do I. I have studied alot because this is my 3rd surgery but 1st fusion. My surgeon acted like the sucess rate was 100% and even acknowledged he has about 1 a year that don't work.But with me, he was so sure. Like he was afraid of getting sued.
My insurance is through medicaid, but in connection with our state, a state program. It is simular and run by medicaid with less advantages.
As for the morphine drip, I have had one before. People like me that are opiate tollerant and build up tollerant sometimes the morphine has NO effect and their is nothing more than they can do short of keeping you knocked out. This dilaudid 4mg is 8x stronger than morphine and I take 8mg. I will HAVE to get off it somehow before surgery again. that is another concern..lol
ANd I have had a mylogram, cat scan, all that other stuff before....and it HURT bad (the mylogram). But I really think I need one now too.
Hi (again) pofdog ,
You read, and kindly replied, to my post last week regarding my saga of back issues. My MRI confirmed, as did the x-rays, that my 7 year old fusion at L5S1 is still rock steady and without issue. Not to digress from my current thoughts on your post too much
Wow! You really have been through the wringer! It sounds like you are having more trouble getting the right doctor to listen to you and the right diagnosis.
Newsweek has an article on pain this week. If you don't have the hard copy you can read it on line at newsweek.com. Just click on the left hand side of the screen where the magazine cover is that says PAIN. This article speaks alot of pain meds, how it affects our nervous systems, the pain receptors in our brains and how pain meds have re-wired our nervous systems permanently. It even talks about spinal FUSION! I know you will want to read about that since they have "no acceptable evidence" to support doing them. That was a real eye opener for me!
At 6:00 this evening CBS (with Katie Curic) is doing a special on "Back Surgery-Do You Really Need It". I know I will be glued to my TV at that time. I have also made a plan to get off these pain meds and just use straight advil Liqui Gels. Somedays I swear the more pain meds I take the worse the pain gets! I'll let you know how it goes.