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Posted in: Back pain, Chronic pain, and Sciatica.

I've had 9 back surgeries and I'm still suffering........

Started by mickeymouse on 04/11/2010 12:24am

Hi I was diagnosed with Degenerative Disc Disease when I was 21 years old and I had my first surgery when I was 22. Now I am 36 years old now, I've had 6 spinal Fusions and 3 Laminectonies. The most recent Spinal Fusion I had was last June 2009. Now I am currently in a great deal of pain and I don't know why. I was told about 6 months ago that the disease was in 2 places, my back ( thoracic) and in the Cervix area the areas where the surgeries were is in my Lumbar area that means the disease is spreading. The doctors have all warned me that the disease is so severe that it will over take my whole spine and ultimately I will end up in a wheel chair but I am too active to let that happen. I had to be put on disability recently because of this horrible disease. I try to stay active as much as I possibly can without hurting myself. I ended up getting hooked on pain killers after being on them for 14 years and I had to go to Rehab to get off them, now I am looking for medication that isn't addictive but effective for my severe pain but I am afraid that it might not be possible. Does anyone know of any medication that helps???

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Mickeymouse:

Wow, I can relate to you. My story (shortened for brevity's sake)!

Had a spinal cord tumor when I was 34. No need to say how long ago that was! Anyway, had to wear a brace on my left leg because of residual numbness from the surgery. I felt okay for a while but about ten years ago started feeling more pain in my left leg and foot. Now, it is in my buttocks and groin area both legs and feet. Looked into one of those spinal cord stimultators with a pain doctor. But when I spoke to my neurosurgeon he referred me to some one in his office who is also a neurosurgeon. He advised me that he didn't think because of bone and scar tissue that a stimulator would work, but he recommended a pain pump. So I am going in for a trial on April 26th. Apparently, it is medicine that mixes with your spinal cord fluid. I am in such pain most of the time that it is hard to even sit.

I also am on disability and my walking is not great. I, too, have been told I may be headed toward a wheelchair. It's disturbing to think about but it's also hard not to. As it is, my husband had hand controls put on one of our cars so I could still drive. Boy, is that hard getting used to!

Anyway, I guess I want to say you might want to see a pain doctor to find out about either the spinal cord stim or a pain pump.

Hope this helps!

Pam

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Hi Pam, thank you so much for your reply and advice. My name is Pam also. I had a Spinal Stimulator put in last year but 6 months later I had to have it removed because it was causing a lot of pain and bladder control problems. I will ask my doctor about the pain pump but I don't think he'll go for it because I just got out of rehab for pain killer addiction and well I've been clean for 2 months and was pain free until last week when my back started getting bad again. I walk with a cane at times. Right now I am having problems with my Liver enzymes being too high and well tomorrow I find out if I have to go back into the hospital for that and that problem complicates the pain medication issue for my back. I don't know what to do? I can barely walk right now and it scares me half to death.......PAM

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Have you try seeing a Pain Specialist? I have been seeing one since 2006 and had Facet Injections. The Neurosurgeon that did my lower back (5 times) was then treating me for Epidural Injections and that was WRONG!. I was told this from my Pain Specialist. It took good over 12 injctions and I was somewhat pain free for a year and half. I am now am going back to the Pain Specialist for stiffness in my lower back. I have away to go, but I LOVE MY PAIN SPECIALIST! My pain specialist does every injections in the office under a floroscope to show exactly where the pain is coming from.

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Hi Mickey: I can empathise with what you are going through as well as some of the other posters. I have experienced multiple spin surgeries over the past 8 years (11) to date. I fell back in 02 only 6' off a ladder and fractured 4 vertebra and acquired spondylolisth this of the L-5 vertebra. I underwent my first surgery that was to reline the vertebra and fuse L-1 thru S-1 using pedicle screws and rods along with bone harvested from my iliac crest. This surgery failed 2 months out the pain was much worse than before, I was also experiencing what I can only describe a cutting torch on my upper thigh after standing for more than 10 min. I was also having some incontinence and left leg foot drop. During followup visits to the neurosurgeon it was decided to to another to try to stabilize the L-5-L-4 junction as it had become dislodged and was putting pressure on my sciatic nerve. The surgery took place 3 months after the first and things seemed a little better the first few days then at home while changing my dressings my wife said that there was an increased amount of drainage and it was a yellow greenish with a pungent Oder. I had been running a low grade fever but they said this may occur. She called the surgeon and he said not to worry just keep it clean till I my next weeks visit. The next day I developed a 104 fever and more drainage so we went up to my PC doctor who sent me straight to the emergency room. I was admitted and was seen by infectious disease Dr. who cultured the fluid and discovered that I had MRSA so I was treated with a pic line and vanco was released after a 3 week stay. The pain started to creep back more and more and no signs of any bone growth The infection was going through my body and I felt as if I was dieing I was now put on Zyvox 600mg bid. along with 500ml vanco bid. this went on for several months. The infectious disease dr. said that with all the metal in my back that the antibiotics could not kill the infections because there is no blood supply to the metal and it should be removed till the infections are taken care of and then at a later time be replaced. He coordinated it with my Neurosurgeon and I was transferred from the hospital I was in to the one where the surgery was to be preformed this was the biggest of all it was discovered that 2 of the screws were broken off in the vertebrae and a rod was bent the vertebrae had to be drilled so the abscessed screw could be removed he also did what was called a BMP fusion L-1--S-1 . While in recovery from the surgery I suffered a pulmonary embolism and had to go on blood thinners. The pain had increased 10 fold and it was the beginning of a nightmare. 2004 I had under gone 3 more fusions Apr, June and July all while being treated for the MRSA. After this the infections elevated to another level It became osteomyelitis in my pelvis and L-4 and L-5. My infectious disease Dr. kept aspirating fluid collections in my epidural space but they would just refill and my subcutaneous tissue began to break down and he told my wife and I that they had done all they could at the hospital and suggested I go to a larger more advanced center so he recommended we go to Cleveland Clinic so we did, We meant with several neurosurgeons and infectious disease doctors that were correlating a treatment plan for my infections. They told me that they were going to try to debride the infected tissues and it would be done over several surgeries but they wanted me to understand that they were only gong to try to treat the infections and my spine had been manipulated so much that the amount of scar tissue and degeneration that there was no consideration for spinal stabilization till later. They did the surgeries and saved my life and I was finally sent home only to have the incisions reopen a few weeks later and have been being treated at wound care to this day wet to dry dressings, prisma, wound vac and several other dressings. The wounds have begone to close and the infections are at bay for now but they said I should not undergo any further spinal manipulations for the risk of reinfection is very high they said once you have MRSA you always have it. There are several strains of MRSA however the Clinic said the one I was cultured with was a hospital born one that I most likely got during one of my surgeries. This was 2006. To date 11 surgeries if I included the weekly debridements at wound care it would be hundreds. 9 pic lines, hundreds of gallons of vancomycin, Zyvox, Cipro, Fortaz, Trictamycian, Clyndamycia and others. Currently taking Bactrium and will have to take a antibiotic for the rest of my life for suppressive measures. I understand that they were fighting the infections but I feel that they did not understand how much pain I was in and it has just gotten worse week by week I am fortunate to have a great pain management clinic at a major university in my home state that is very compassionate about controlling my pain. They did a full work up and told me what Cleveland had told me that due to the amount of surgery and risk of infections that I was not a candidate for further surgeries and that they had advanced pain management techniques that they would treat me with. I have been with them for a few years now and have had some success however I have found lately that the pain gets worse, I still have that burning sensation only it occurs in both legs and at anytime, drop foot left leg and weak left leg. I am currently taking 30 mg oxycontin bid and vicodin 750 every 4 hours but I really don't want to go up in dosage but may have to. I did try methadone but got deathly ill after taking it. I was on 4mg of dilaudid for years but helped moderately. In October 09 I had a heart attack and I was fortunate I had to have a pacemaker and DCI installed and during the procedure the surgeon told me that there was some scaring from endocardis and was some dammage to a heart valve but I was very luck that the dammage was minmual. I have talked this over with all my doctors and one thing they have all agreed to is that no more spinal surgeris will help my situation. Prior to my heart surgerie the last MRI I had revealed advanced arthritis, degenrative disc disease and mupitpal facet fractures and hernitated discs. I can no longer have MRI's or CT scns due to my PM and heart conditions. The doctors just want me to be as active as posible and I try and I also try to keep my sprit up as much as possible but it is hard at times only getting a few hours of sleep a day am sure most of you can relate. God bless you all and Micky good luck in the future

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