Prodisc L4/L5 TDR HELP!!!

[kajari]

I am new to ISPINE.ORG and wanted to take a few minutes to introduce my self and give a somewhat brief overview of my life changing injury that has left me in horrible pain…each and every day….every passing moment of every hour. In February 2007 I was working for the Federal Government and without going into all the boring details I will cut straight to the point. I fell 27 feet and though I am lucky to be alive my horrible nightmare of pain started the day I had this horrific fall. I was left paralyzed in my legs for a little while after the fall but when paramedics arrived they were able to straighten me out which helped me to regain feeling and control over my legs. I injured T6/T7 protruding 3mm into my spinal canal, T11/12, and the worst was L4/L5. I tried all of the non-surgical treatments that the doctors would authorize (PT, LSI and Facet injections, TENS, etc..) . Ultimately I went through surgery to remove the L4/L5 disc and in its’ place they used the Prodisc TDR (Total Disc Replacement). Up until I had the surgery I was in excruciating pain that traveled down both legs and into my feet. I also experienced the horrible lower back pain and also constant tingling in portions of my feet. Within two days of having the disc replacement surgery my pain had been reduced from a constant 6 to 7 pain scale down to a 3 to 4 pain scale. I did lose a lot of the feeling in my feet and portions of my calves but this is to be expected when you consider the complexity of the nerves at the location where the disc was removed. I was EXTREMELY happy and was in the process of getting my life back. I went through a strenuous work conditioning/hardening program and after just 6 weeks post surgery my surgeon lifted all light duty restrictions and sent me back to full duty without any work/light duty restrictions. Two weeks after the surgery I stopped taking the Oxycodone, Oxycontin, muscle relaxers and I no longer needed medication to help me sleep at night. It was like a nightmare of pain had finally come to an end and I could finally start living my life again, taking my kids on outdoor adventures, playing ball with my kids, living my life to its’ fullest with my children and wife. I lived this newfound life full of joy and happiness for the next four months till one day in November 2008 when I was sitting on the ground and my legs went numb. I had immediate flashbacks and horrifying memories of the pain that was still so fresh in my mind. I was able to shake off the numbness and regained feeling in my legs. Two days later when I woke up for work one morning the nightmare surfaced with a vengeance and the pain came on like a freight train hitting a brick wall. From then till now the pain has become progressively worse and I am having to take those HORRIBLE pain meds again. I had 4 months of false hope and now my life has been turned upside down all over again. My 4 dear children just do not understand why their daddy is in so much pain and why I cannot live the life they have dreamed of and only have fond memories of. It breaks my heart to see my children suffering because of a work injury that I had no conrtol over…a work injury that was deemed no fault of my own and one that could not have been prevented other than me not being in the wrong place at the right time. I have again been through so much testing….abnormal EMG, MRI after MRI showing bad discs and loss of height in the discs above and below my artificial disc, LSI and FACET injections, etc…. All of this to find out that the artificial disc is causing all of this pain....causing my body to have an inflammatory response to the artificial disc….stress on the discs above and below the artificial disc and much, much more. To compound the situation T6/T7 is causing horrible pain around my ribs now and excruciating pain in my middle back. I was sent in for an emergency MRI because I had lost feeling in my middle back. The Orthopedic Spinal Surgeon who consulted with my on an emergency basis stated that yes this is causing the horrible pain but there is nothing they can do because operating on T6/T7 is very risky since they have to go through the chest cavity. Unless it causes life threatening symptoms he stated there is not a surgeon who would risk my life to try and fix the disc. URGGGGGGGGGG….I am in tears as I type this email knowing that I do not have much hope for the pain in my legs or back. To alleviate some of the pain in my legs the orthopedic surgeons and second opinion surgeons are recommending that they take the artificial disc out of my L4/L5 and fuse me from S1 to L2. This sounds easy enough except it is another extremely risky surgery that not many surgeons or neurosurgeons have had experience with.
So, as you can probably tell from my email, I just want to be able to talk with others who know what this pain is like. As you hear time and time again….this kind of pain cannot be understood or even imagined unless you have been there to feel it. Just knowing there is a wonderful group of people who have shared this pain gives me some hope and time to get my mind off of this horrible situation. I guess if I was all alone and did not have the most wonderful wife in the world and 4 of the most incredible children it might be a little easier to deal with.
Since we do not have any family close by at our current home we are going to be relocating to Western KY where my parents and siblings live. This way we can get some much needed help with a lot of the every day tasks that I can no longer perform. I would like to ask the group in any knows of a good Orthopedic Spine Surgeon or Neurologist who has experience performing back surgeries. We will be close to Paducah in KY and Clarksville and Nashville in TN. I would love to hear any recommendations you may have. I need to find a good surgeon and also a good pain management doctor before we make the move in May.

Take Care,
Greg

[dshobbies]

Hi Greg and welcome to the forum,

First let me say, we understand. We've walked in your shoes. Then let me tell you that everyone is different. Judging by the suggestion of fusing all the way to L2 suggests to me that your doctor isn't quite sure exactly from where your pain in coming. This also sounds quite drastic for levels that may not be involved, etc. Your ADR may or may not be causing the pain if there are other discs involved which the MRI should have revealed - loss of disc height and such. You also have issues in both your thorasic and cervical spines.

Choosing your doctors carefully is the best decision you can possibly make for your spine. IMHO you need the absolute best diagnotician available and that is Dr. Baumbach in Germany. He could hopefully pinpoint which discs are causing your pain and which should be left alone. If you can afford the trip at all, this should be your very first step in resolving your current pain.

Please contact Mark at GPN Artificial Disc Replacement ADR to see if he can set this up for you or give you more suggestions on how to proceed.

Fusing all those levels will change your life and should not be considered unless as a last resort. You are not there yet.

Greg, I'm so sorry for all your suffering. No one should have to live their lives in such pain and perhaps you don't have to. Please contact Mark, he too has been there, done that. I wish you every ounce of luck and hope you are able to find your solution,

Dale

[kajari]

Dale,

Thank you so much for the response and information. I will take a look at the link and see about contacting Mark. This is a really tough situation for me since the injury was work related and is being covered by Federal Workman's Comp. It may be well worth the money to pay out of pocket for the services in finding a very reputable and highly experienced surgeon who has worked with patients that have experienced some of the complications that I am having. I am really reluctant to have a multi-level fusion as I explained in my original post. In my best interest, it would be best to have the least amount of fusion necessary to achieve a reduction in pain. Since I am only 40 years old I am a little cautious about a fusion especially if I live for another 30 years... So far I have had two surgeons state that I need to have the fusion but I would like to see if there are other options that may be a little less drastic. It has also been recommended that I try a spinal stimulator trial since this may be a very useful diagnostic tool. I am just learning about the spinal stimulators and have talked to my ortho and PM doctor about them. My PM doctor thinks that a trial may be very useful in proving that the pain is being caused by nerves as it will probably not be effective in reducing my pain level if the majority of my pain is from the inflamatory response that I am having due to the artificial disc. I am really concerned about any procedure and want the least invasive procedure possible. In my original thread I forgot to mention a key complication that I have been having. My right leg completely gives out...no feeling...no control over it whatsoever. This happens about 3 to 4 times a month and happens without any warning. Needless to say, it causes me to fall to the floor or back onto the couch it happens when I am trying to stand up. It only takes less than a minute to regain feeling and control in my leg but it is causing a great deal of concern for myself and my surgeon. As you can see there are multiple symptoms that we are dealing with and it is a very complicated situation for any ortho or neurosurgeon to figure out. This is why I am being very persistant in finding a very good neurosurgeon in the Western KY or Nashville TN area before we move back home. The link and information you sent will be very helpful with this process. Again, my wife and I are extremely grateful for the information you sent!

Take Care,
Greg

[runner]

Greg,

How do you know you are having an inflammatory reaction to the disc? Have you had inflammation markers checked? Does a myleogram show fluid around the disc, indicating inflammation?
I definitely would get another second opinion. You may need fusion or you may need something else.
For me, red flags go up when someone starts talking about spinal cord stimulator. The scs is for cases where nothing else can be done like surgeons have given up on you as far as fixing you.
How worked up were you by your surgeon?

It has been my experience that doctors don't agree with each other. Some just want to operate without finding out the true pain generator.

If my original pain doctor had listened to me when I had pain at L5/S1 during a discogram, I probably would have had my back fixed with one surgery. So I had symptoms similar to you (in one sense, mind you) in that I had L4/5 done and then L5/S1 went less than six months later. My new symptoms included numbness in my legs and extreme sciatica and a slow increase in back pain. My legs typically go numb when I am sitting on the ground. Sometimes when I am just laying around. Before I had three ESIs, I had my legs going numb when I was standing. For instance, when I voted, one entire leg went numb. When my gabapentin medicine starts to wear off, the numbness increases. It tells me that it is time to take my medication. LOL.

Since you took such a bad fall, there could be all kinds of things going on. Wondering if you had your cervical area checked also?
Have you had a discogram on your other lumbar discs. A discogram can determine if you have discogenic (coming from the disc) pain at other levels.
I know how bad it is to live with pain and how restrictive it is. I wish you luck in your endeavor to get help with your spine.

[sahuaro]

Greg:
I am so sorry that you are suffering so much.
I can't agree more with the advice to contact Mark and to have a full diagnostic work-up. I also wanted to add that Dr. John Regan in LA has created innovative techniques for thoracic spine surgery--so there may be more options out there than you are aware of.
Please keep us updated as you can.

[kajari]

There have been serveral doctors involved since the fall and surgeries happened in Las Vegas . Original MRI's showed everything was OK with C-Spine, T11/12 moderate bulging (dont remember the extent right now without looking at the MRI report), T6/7 protruding into the spinal canal by 3mm, Herniated L4/5 and other minor bulding discs in T-Spine and L-Spine. Went through the injections with no relief. Discogram on L3/4 with moderate pain, L4/5 only held 5 PSI before disc gave way and die escaped, L5/S1 produced minimal pain (dont remember at what PSI though). There were other complications from the second surgery to my Right Meniscus (which was damaged from the fall). After knee surgery I had Turniquet Palsy which caused complete loss of muscular function in Right leg for 3 1/2 weeks. That is a whole seperate story in itself. Back to the problems with my spine.... about 3 months after my L4/L5 ADR surgery the surgeon released me from all light duty restrictions. I took advantage of the fact that I was feeling GREAT and transfered with the Federal Governmenbt to Colorado. About 1 1/2 months after I transfered here was when the nightmare revealed its' ugly head again. Seeing a new orthopedic surgeon now since I transfered...he had nothing to do with the ADR Surgery. He ordered multiple MRI's which showed the loss of disc height, CT Mylogram which showed the same plus inflamation at the levels above and below (I do not have the reports in front of me so I may be forgetting some of the findings). Had LSI and Facet injections as a diagnostic.... Facet injections at L3/4 produced pain so bad that I could not hold back the tears and it also caused my legs to start curling up/bending at the knees off the table. They had to hold my legs down on the table. L4/5 injections did not do much if I recall, and L5/S1 had relief on right side but terrible increase in pain on left side. EMG/NCV showed some sort of neuropathy on the right side but everything looked fine on the left side.
The pain MGT Doc, Ortho Surgeon, and SECOP (second opinion) Doc all agree that the spinal stimulator will not work but it has been suggested by the Federal Workman's Comp nurse that it be tried as a diagnsotic tool and to rule out its' effectiveness before fusion be performed. I have done a lot of research on the stimulators and I have no faith that it will work BUT in the unlikely event that it does work then I will be the happiest person in the work.
I do think that our move to KY to be close to my family for help and support may be one of our best decisions since I can now pick another surgeon (hopefully I can find a good Neurosurgeon) who will be impartial and a fresh set of eyes on my condition. This is why I am actively trying to get good recommendations from surgeons in that area. I am not opposed to spending some money out of pocket to get another second opinion as well. This is why I was very pleased from the original response with the links and also stating Mark as a contact.
NOW that I have this all said....my true feelings are a little different than what I have been told by the Docs. I honestly feel that the T-Spine discs...more importantly the T6/7 might be causing some of the issues I am having with the pain, weakness, numbness, etc post surgery. T6/7 was never followed up on since the original surgeon had me thinking everything was being caused by the bad L4/5. BUT now that I have lost feeling in the middle section of my back extending out towards my ribs, more pronounced on the right side and not going all the way to the front section, stabbing pains in my ribs and a feeling like a band is around my front section makes me wonder if this needs to be investigated as maybe a cause for some of the increased pain, weakness, etc in my legs. I also have really bad pains in my back that are really pronounced around where the T6/7 and 11/12 are located. The pain is like there is a rock or marble pressed between these discs...it hurts really bad and is so pronounced that I have my wife put her finger right on the area of pain and it is right between the vertabrae.
OK....I am really suffering from the increased pain from sitting in front of the computer. I need to step away for a bit and take some meds before the pain gets so bad that I will not be able to sleep one second tonight. BTW, sleep is another HUGE issue as I only get a total of about 2 to 3 hours of broken sleep at night. Usually about 15 to 30 minute intervals. URGGGG....gotta go

Take Care,
Greg

[runner]

Greg,

You have been through the ringer.
I believe you should trust your instincts when it comes to your health. So if you feel something is wrong that the doctors are missing, you are probably right.
I knew when I felt pain after I had been feeling pretty good after my surgery that something was terribly wrong. I hoped I was wrong.
I told the doctors that I thought something was wrong at the L5/S1 level but they told me they had to rule out a number of things. So I went along with that because I really did not have a choice not to and I was hoping and hoping I was wrong and I was going to be OK.
That was not the case unfortunately.
I am sure someone on here will know doctors in Kentucky. As you have been to a few doctors, you know that they seldom agree when it comes to the spine.
I know it is difficult to sleep. Without medications, I don't know how I could even function. I have been trying to make it a point to get to bed earlier, but some nights the pain is bugging me too much and I stay up.
I know it is difficult on a family to have a spouse in so much pain. My relationship with my husband is hurt by my difficulties with my back and the pain. It is difficult but we realize that hopefully this is just a bad part of the good and bad and it will be over soon, we hope. My kids and husband have had to learn how to live with a person in chronic pain.
Maybe you can get a pain doc who will get your pain under better control.
Family support is helpful and I hope your move to Kentucky is helpful.
I think you will find a lot of supportive people on here and soon others will be chiming in.

R