Suggestions and opinions on surgery gone wrong please!

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fusionbackfire

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Hi!
I need all of the support, kindness, and advice that I can get. In July of 2008, I underwent an extremely experimental T2-L2 spinal fusion. It was a 14 hour surgery that required the surgical team to remove most of my T8 vertebrae, cut the middle out of my T7 and T9, and I have 22 screws and 3 roRAB in my back. I was told that the recovery would be 6 months to a year and that my pain would not be as bad as it was before surgery after recovery. Almost 29 months later, I am in horrible pain. I am on massive pain medications and I was just told that I have unrepairable and irreversable nerve damage throughout my entire back and it radiates down my left arm. I have uncontrollable muscle spasms 24/7. Some of these spasms are so bad that it will actually make my whole shoulder jump. These spasms in my back feel like a horrible leg cramp times 10. There was so much cutting in my surgery that all of the nerves healed incorrectly. Doctors have video of them very lightly touching the lower left part of my back and that touch triggering an enormous spasm in my upper right part of my shoulder. That's how screwed up it is. I also have arthritis in 13 of my vertebrae, disc degeneration, fibromyalgia, and neuropathy. My surgeon has basically told me that he has exhausted all options and "good luck". I am only 29 years old. I have a wonderful and supportive wife and three beautiful young children that need their Daddy back. I can't do anything because of the pain. Need someone to talk to and damn sure need some advice
 
Dear heavens, I cannot begin to imagine what you are going through. You have my sympathy and well wishes. I don't think I could hold up under those conditions so you also have my admiration.

In your shoes, I think I would talk to the doctor about the possibility of a pain pump. There is a pump that baclofen can be put in to help with the severe spasms you have, tho I don't know enough to say it's right for you...just something for you to ask about. Have you considered seeing another doctor for a second opinion about any possible options. I don't much like to hear that a doctor is just turning his back like that and just wishing you luck. The only other option I can think of is to see a pain managment specialist. They have so many procedures, etc. that they can do and that most doctors don't even think about.

You're a young man with a lifetime ahead of you, and I wouldn't let one doctor write me off without fighting back and looking into all other possible options.

I hope that others may come along who can offer more than I can. Please know my thoughts are with you as well as my prayers. Please, do continue to post as often as you need to. This is a great place to let off steam and get support.

Carol
 
I am so sorry to hear of your troubles. Can you tell me why the surgeons did such extensive surgery on you. What problems were you having prior to surgery and was it the result of an accident. How fully informed were you prior to the surgery about the risks involved?
 
By the way, here is a list of the medications that I am currently on:
Oxycontin CR 10mg-Every 8 hours
Oxycodone IR 5mg-4 tablets every 8 hours for breakthrough pain.
Lyrica 300mg-One tablet, twice a day
Celebrex 200mg-Once a day
Perphen-Amitrip 2mg/10mg-One-Two tablets at bedtime
Hydrochlorothiazide 25mg-One tablet in morning
Diazepam 10mg-Every 8 hours for spasms and anxiety
Carvedilol 12.5mg-One tablet, twice daily
TO SUM IT UP:
I take a total of:
90mg of Oxycontin daily for pain
600mg of Lyrica daily for Neuropathy and Fibromyalgia
200mg of Celebrex for the Arthritis that has set into my 13 vertebrae
30mg of Valium, (Diazepam), to keep me calm through the pain. It does nothing for the spasms.
Perphen/Amitrip is supposed to help me sleep. Ha! It does nothing.
I have been on literally every muscle relaxer there is. None of them have worked. I have even tried the Baclofen. Amazingly, I could take them like candy and nothing works. My body is tired so I will fall asleep. The muscle spasms are so bad that they will shoot me straight out of a deep sleep. I pain meRAB just take the very tip of the edge off. I can't even begin to explain how bad the pain is even with all of these meRAB. The doctors all say that I am on enough meRAB to knock out three grown men. They do nothing for me. It is so screwed up, if I, for example, bend down to pick something up, 9 times out of 10, my wife has to help me straighten up. My faith and faith alone, has gotten me through these 29 months. My will power is running really low though. My body is starting to say enough is enough. Maybe this post will shed some more light of what I go through on a daily basis.
 
Oh Dear Jesus!! Bless ur heart and ur family, u are in my thoughts and prayers. I can not imagine what you are going through. You are so young to have something like this happen to you. I cant say I have any advice, but I do agree with Carol and I would also get other opinions and definetly see about a pain pump. I bet meRAB just dont cut it for something like that and being on them for so long will increase ur tolerence for them and eventually wont do anything for you. Im sure there are higher doctors/specialist out there that can do something/or fix what has been done to ur back. How did everything start in order to have that done almost 2 years ago, right? Please do keep posting, for you and for others that may have something like this happening. Again, my thoughts are truely with you. God bless you :angel:
 
The cause of the surgery was from a car accident when I was 11 years old. It caused compression fractures in my T7, T8, & T9 vertebrae. No doctor caught this for some reason. It caused a severe case of Kyphosis, or the huncrabroadack. I went through brace after brace, with no correction of course. Most of my school years were spent in hell, as kiRAB made fun of me because I was the "Huncrabroadack of Notre Dame". It even got to the point of me attempting suicide when I was in 9th grade. Luckily a friend, one of my extreme few, caught me and stopped me. The surgery that I had was only supposed to last around 6 hours. 14 hours later I woke up. Went under at 10AM and woke up at midnight. It didn't become experimental until I was under the knife and he had me cut open on the table. At one point in the surgery, he decided he didn't like what he saw and started over. I am going to get my films and send them to anyone that would like them. I guess I could go ahead and post them on my profile as well. It is so extensive and experimental, that 98% of the doctors that I have gone to, won't even take me on, because they flip out when they see the films. I will get those posted soon.
 
The problem is, I have gone to multiple pain specialists, and they have all said that there is nothing that they can do. The medicine that I am on right now is all that can be done. There is so much hardware in my back that doctors are afraid to even mess with anything around my spine. The scar on my back is 23 inches long, if that gives you any idea as to how bad the surgery was. I wish that I could post pictures on here so you all could see the films. The last specialist that I saw said, "The way you are now is the best it's going to be." Encouraging huh?
 
Call Dr Kenneth Lee in Sugar Land, TX...I highly recommend him...he's my surgeon. I hope you can get some relief soon, hang in there!


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Have you discussed this with an attorney? This dr. had no business doing an "experimental procedure" without your permission. No money in the world can make up for what has happened or for your pain, but it can help you get the best possible care in the United States. I honestly believe you have a case and should look into it.

Also, it angers me that no pm has offered to help you by putting you on baclofen which would greatly reduce the spasms. I think you should keep pushing to find a pm who will listen and at least do a trial of the baclofen pump.

Don't give up....somewhere there is a doctor who will at the least be sympathetic and willing to try for relief for you. I have been thinking about you since you first posted and am still stunned by what happened. I would be finding an attorney asap and see if this dr. has committed malpractice.

Blessings.

Carol
 
I can only echo what every one else has said. In regarRAB to your meRAB I don't see that you are on a LA med such as morphine. It wouldhelp with keeping you on a steady med basis. Also Percoset IR 5mg also comes in a 15 mg tab.

Does the Lyrica help for the nerve pain? I switched when I dind't like the side effects of it. If it isn't working there is also Neurontin and Topomax.

I can understand your frustration. I had a broken back after a 3 level fusion and am now fused from T9-sacrum. 2 15" titanium roRAB and 20 screws. Sure wreaks havoc when I wear low backed dresses. I have considered puting sequins on either side of the scar and say it is a zipper....

You do need to find a attorney. good luck-you are in my prayers.
 
Thats terriable...So you no longer see the doc that did the surgery?? You are able to post pics on here I just dont know how, but Ive seen it done before. But why did you have this huge surgery to begin with??
 
My son had the baclofen pump and at one point they were mixing baclofen and dilaudid for enhanced pain relief.

I highly recommend the baclofen pump trial. I took my son to the 'grandfather' of the procedure who is now in Madison, WI. He is very accessible for consult as well.
 
I would talk to your Dr about Morphine extended time release. After my second surgery I was on a morphine pump for a couple days and then short acting opiates every 4 hours. After one of the nurses kept missing my meRAB thru out the shift the night Dr put me on the extended release morphine and it was a god send. It lasts 12 hours and I am still on them now (8 months) One in the morning and one at night and dilaudid 2mg PRN for breakthru pain. The Morphine is 30mg. I would also suggest Cyrabalta for the nerve pain, Lyrica did not agree with me or help much. Cyrabalta is now being used as a pain med as well as the original purpose of trreating depression and its worked well for me. Kills two birRAB with one stone. God Bless and keep posting. Rich
 
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