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

[kajari]

Runner,

It seems that the effects our pain has on our close family members is a common issue most of us share. I know first hand the stress and heartache that my wife and children have been through as a direct result of the chronic that came with my horrible injury. My children are so young that they just do not know how to cope or deal with "new" daddy that this cronic pain has created. Three of my four children are old enough that they all remember the time I spent with them running at the park, playing ball with them, going on nature walks, and all the other fun things that an active and athletic enjoys with his kids. I have tried to be creative and find other ways to spend quality time with them but I am constantly reminded of the things we used to do that I cannot do any more. It just breaks my heart but I can just hope that they will grow up knowing they were loved by BOTH of their parents and that even though dad was not able to do all the things kids like to do that I gave them every ounce of love that could ever be imagined. URGGGG...it just breaks my heart!
I have been through so much with all the procedures, surgeries, etc that seem to fail, not work at all, or give me a false sence of hope before I go right back into the horrible cycle of pain 24/7/365. I just cannot see any light at the end of this tunnel anymore. It makes you a stronger person but I could think of a thousand different ways to become a stronger person.

Take Care,
Greg

[kajari]

I received a call today that the spine stimulator trial was approved. I do not have very high hopes that it will work after reading about so many failures and inability to properly control pain. I will go in with my head held high and with a good attitude in hopes that it will work but I am not going to get my heart set on it working at all. If it does not work they are going to do another round of discograms and recommend the fusion and disc removal. This will be a huge step and a decision that I will have to do much research on. I want to make sure this will be my last and only option since it is such a major and risky surgery. I will update once the spinal stimulator surgery is done on March 12th.

Take Care,
Greg

[Crystal33]

Greg,
I could easily be wrong, but it seems to me that after ADR surgery and rehab your doctor should have not have lifted all restrictions and should have told you to go very easy on your spine for many months at least due to other discs issues.
Tragically your issues may be too severe but some people manage to improve with time and care. Sometimes rest and then rehab possibly helps. These are recent links that i kept as I have torn and bulging lumbar and thoracic discs, though still do not know whether i will avoid surgery. Personally i remain loathe to consider thoracic surgery despite the pain because it is major, risky and fusion i think has only about 50% patient satisfaction. plus it can accelerate deterioration in any compromised adjoining discs.
having the best doctor you can find is essential regardless.
Thoracic Spine Pain: Case study Sally’s confused spine | Sports Injury Bulletin
Functional Restoration for a Chronic Lumbar Disk Extrusion With Associated Radiculopathy -- Hahne and Ford 86 (12): 1668 -- Physical Therapy

[kajari]

Please excuse my typo and grammar....in excruciating pain. On March 22, 2010 at 10:30 a.m. I went in for the start of my SCS Spinal Cord Stimulator trial surgery. Surgery at 12:30 p.m. and ended somewhere around 3:00 p.m. I awoke from the surgery with some discomfort as expected but some suttle surprises. To my dismay the orthopedic surgeon had installed the permanent SCS paddles which were around T8/T9. Since I have 4 younger children at home it was decided to keep me overnight in the hospital to give me some quite time to start the healing process. The surgeon stated the surgery went fairly well but he had to make a few holes in my spine for the paddle to fit properly.Around 9:00 PM that night I started feeling a good bit of discomfort in my back which the nurses said was normal and they administered some IV pain meds. Around 2:00 in the morning is when things went all wrong. I woke up with excruciating pain in my middle back and had a HORRIBLE banding of pain that went from near where the paddles were and wrapped around my middle section. It was like a horrible hot knife that was being stabbed around my ribs. The pain was 15 to 20 plus on a 10 pain scale. It was so bad that I was banging my head against the wall, pacing from wall to wall and could not get comfortable. The pain was so bad that they called the on call surgeon who said to give more IV pain meds. About an hour or two later I was able to lay down on a hard couch type bed in the recovery from and with some Zanex I got about an hour or two of broken sleep. Next morning pain had subsided a bit but my heart rate was over 145 BPS and they could not get it down. After lots of pain meds they were able to get it down around 110 BPS. Next day pain was a bit better so they discharged me from the hospital. I still had horrible pain banding around my chest, lost feeling in my left side, abdomen, and my testicles & groin. Loss off feeling in groin causued me to have to urinate by gravity since I could not feel the urine flow. Pain got worse at home that night and I started urinating on myself and hand not had a bowel movement in two days. I got about 2 hours of broken sleep that night only getting a bit of comformt on a hard couch in the living room. Around 6:00 AM I woke up with the most excruciating pain I have ever felt in my life….pain banding around my ribs and horrible pain in my t-spine area of my back. I tried to get up off the couch and collapsed to the floor in pain. Could not move or get up from this excruciating pain banding from the middle of my back around my chest, urinating on myself and still hand not passed a bowel nor felt a need to have a bowel movement. Paramedics were called, Blood Pressure was 186/116 due to pain. My wife said I was screaming louder than she thought was humanly possible. Was taken to the hospital by paramedics with morphine drip to control the screaming/pain. Surgeon ordered a CT Mylogram with die. Was in so much pain they could not get me to lay flat on the table. Docs decided to put me on constant IV Morphine and then Dilaudid. I was giving so much pain meds I do not recall many of the events (My wife is dictating). Surgeons took me in for emergency surgery. Performed double laminectomy at the area where the ortho placed the SCS Leads. I still do no know whey but surgeon is being very reluctant to share information. He removed to huge pieces of bone from around T7 thru T9 and also for some reason went ahead and installed the permanent SCS battery, etc. I woke up with TOTAL Amnesia which they attribute to the incredible mount of pain and stress that my body had been subject to. Still no feeling in my groin, scrotum, lower abdomen, and left side. A day or two later they discharged me from the hospital even though I was still having the bad banding of pain from mid back around ribs in front. Next day pain got so bad (Pain banding again) that I went in to see my pain doc. He took one look at me and said that there was something horribly wrong and due to me urinating on myself and no bowel movement for over a week that he thought I was in spinal cord compression distress. Hospital only 10 minutes away but he demanded that I be taken by ambulance to hospital. Admitted again, and was placed under General Anesthesia for CT Mylogram (due to my pain and inability to lye flat). Ct Mylogram showed some flattening of my spinal cord now and neuro states nerve damage. How could this have gone so horribly wrong and the ortho wont tell us what went wrong. States that the pain banding may last for a few years and may never go away. I feel so guilty for wanting to get rid of the leg pain and now these horrible complications have made things so much worse. I don't even know how to pick up the pieces from here and am scared to death of where to turn. I do have an a appointment with antother neuro this week but I just cannot even begin to think when or if anything can be done from here. I am an absolutle mess both in pain and emotionally a wreck.

[dshobbies]

Though I have sympathy for what you're going through, I can't begin to imagine the pain you describe.

It isn't for me to say but it does sound like your doctor did something questionable if not outright wrong. I have absolutely no experience with sps but this simply sounds terribly wrong. Good that you're getting another opinion. I do hope this can be fixed. I suppose time will tell.

Quite honestly, I'm at a loss for words because this should not happen, ever, to anyone. Please let us know what your new doctor has to say.

You are in my thoughts, Dale

[Maria]

Greg,
reading your initial post I could identify with several things such as my injury too was work related tho not a fall, I had the flash backs re terrible frightening pain after having a successful first surgery tho then the disc above had problems ...

I also have a cervical disc bulge plus the remaining low back disc problems altho with time and many a surgical consult and recommendation tho no further surgeries after my 2nd (which failed miserably) I am doing far better.

Yes I do take pain meds altho have been pretty much on same dose now for nearly 10 years. Light dose of pain med and 1800mg of Neurontin. At least my pain has really subsided/stabilized and so forth after many years of debilitating pain that forced me into a very early retirement.

I too recommend multiple consultations with highly reputable doctors. Ditto on the recommendation to contact Mark M. with your situation/history and that's a serious ditto! Mark has been so helpful to so many of us and even with my WC situtaion he was greatly helpful to me and I believe the outcome of my case in the last few years.

My original injury was in 1982 working in Neurosurgery and taking care of a post op patient (transfer from gurney to bed). So ... I've had a long history with back pain and have been thru much however am just happy to be where I am today altho there was a time when I would have NEVER thought I would feel this good again.

Good luck and even tho it seems as tho your life is controlled and ruined by pain just remember that you don't really know what is going to happen in the future with your spine so just take it day by day. Sending yourself mentally into the future and dooming yourself to a life full of pain because you feel it so horribly today isn't necessarily what the future will be like.

Hang in there and do the best you can for now and give yourself credit for that even if it's just telling your kids you love them very much, hugging them and helping them to be the best they can be~ Love is very strong and can do so much~ even if you cannot physically.

[kajari]

It has been a few weeks since my last post about the complications I am having from the Spinal Cord Stimulator and Multi-Level full Laminectomy. I was in high hopes that the crippling pain that I am now experiencing from the Laminectomy would be getting better with each passing day. WELL I WAS WRONG! I had a week where the pain (banding pain around my chest and thoracsic pain) did not get any worse or better and I thought that I might be able to deal with this type of pain with the help of medications. Over the past week the pain has become increasingly worse and is sometimes worse than anything that I have felt so far. This past week I noticed a lot of pressure in my thoracsic spine where the laminectomy's were done. My wife looked at my back and said the swelling is really bad...it is very noticeable over the t-spine but also goes out to my shoulder blades. The banding pain around my chest has become unbearable and I have now started to have severe contractions from the area of the laminectomy around my chest. It feels like someone places a belt around this area and tightens it as hard as they possibly can. It is so bad that it takes me to my knees and takes the breath out of me. This comes with no warning and the pain is HORRIBLE! I do not think it is an infection since my temperature is normal. I have also noticed that my feet get REALLY cold and start to sweat...this happens even when I am laying down on the couch. It has become so bad that my wife has to assist me in getting into/out of the bath, she has to bathe me, help me in and out of my recliner, and has to pretty much help me with most of the simplest tasks that I was able to do before the surgery. I am also dropping things constantly. My wife has to get my medications for me now since I have dropped them on several occasions. I have also started getting quick "jolts" from the SCS. The jolts are really quick and happen in my lower back and middle back around my t-spine. The SCS is still doing a good job controlling the pain in my legs and is about 70 percent effective. Ice and Heat do not have any affect on the swelling in my thoracsic spine. I still have lots of numbness in my right side abdomen, numbness in my groin area, and do not have any feeling when I urinate. I have to concentrate really hard to get the urine to flow and it takes about 15 minutes to drain my bladder. My bowels are working as expected now.
I have an appointment this week with the Boston Scientific rep and the surgeon who performed the surgeries. Ever since I had the SCS surgery and the emergency laminectomy's there always seems to be a gut feeling that something is not right. I also forgot to mention that it feels like there are rocks/pebbles in my back where they did the laminectomy.
Is there anyone on ISPINE.ORG that has experienced anything like this? I am getting really worried since it has been 1 month since I had these surgical procedures and I would expect things to be getting better by now not getting worse like I am experiencing now.

Take Care,
Kajari

[Gil Denis]

Hi Kajari

I am for a lost of words, your experience is like reading a Steven King novel
I have a brother in law who is an engineer at Boston Scientific, mostly working on heart stints.
I will contact him and see what SCS is all about etc...
God Bless
Gil

[kajari]

Gil,

The SCS is a spinal cord stimulator which helps an individual with pain the limbs. The SCS is working great and I could not have asked for a better outcome as far as the SCS controlling my leg pain. The issues I am having now are a result of the surgery to implant the SCS. I am trying to find out what went wrong and why the doctors had to do the laminectomy's and why I am experiencing the horrible complications from the procedure. The surgeon is being very quiet about the whole thing and I feel that he is not being completely honest with me about what led up to the emergency laminectomy. I went from having extreme pain in my legs to this HORRIBLE banding pain around my chest. The banding pain is far worse than the leg pain ever was..... If I could only go back in time I would have elected to have another sureon do the surgery or not have it done at all. BUT I am trying not to look at the past and am keeping my head up high hoping that this banding pain will eventually subside. My nerves are freaking out right now and it may be due to some nerve damage from the laminectomy surgery. From what I have been told it can go away in a few months, a few years, or be here for a lifetime. It is so frustrating and depressing right now.

Take Care,
Greg

[Aaron]

That is the exact level I have a herniation T6-T7, along with tears in 3 discs around it. I have not heard numbers as low as 50 satisfaction rate, and that may be due to the muscle damage used in the old surgury. Also I have heard from several great Thorasic docs that the ribs allow for less adjacent degenerationg after fusion. The ribs limit the movement and help with stress on adjacent levels. I warn you thorasic spine is extremely tricky and a surgeon not familiar with it can cause you more harm than good. I have done alot of reas. and Dickman, Regan, Perrin are about the only I would trust to cut on me in that area. There are some thorasic surguries that are less invasive now, VATS, dickmans surgury ( forgot name). Both regan and dickman basically wrote books on thorasic spine surgury. Spine health recently had girl have the big surgury, fused that level she is doing good. She has pics of scar, and talks about it alot. Its in the back surgury section, says thorasic surgury. I warn you it is very hard to locate many with that surgury. Mark is dealing with thorasic issues now so he is a good person to talk to.

[kajari]

I do not know if you recall but several months ago (about 6 months) I posted about the horrible experience I had with the implantation of my spinal cord stimulator. See original post above for more detailed information. In a nutshell, I was left with a partially flattened spinal cord, horrible banding pain around my chest, loss of feeling on the left side of my abdomen and groin area along with intermittent bowel and bladder issues....much more but those are the major issues. These problems still continue today. About 2 months ago the stimulator stopped working in my legs and started a horrible shocking sensation in my tailbone. The Boston Scientific reps have tried numberous times to adjust the unit without any success. To say the least, they have shut off the stimulator because it has stopped working as expected. X-Rays show normal lead placement. I am writing because I am left with a huge dilema. Since the stimulator is turned off I have had two surgeons state that I should have it removed. Has anyone else experienced failure of a spinal cord stimulator? Has anyone had it removed after 6 months being implanted. What would your opinion be, considering the horrible complications I had with the original surgery? Would there be a problem with scar tissue having it removed. I am really concerned with the complications I am still experiencing and am afraid if it is removed that further nerve damage may occur. I would love to hear what the group thinks about this situation. Additionally the surgeon who performed this surgery will not say a word about what went wrong with the original surgery that resulted in a T7 to T10 laminectomy days after the SCS implantation. No where in the medical records does it state there was swelling or hematoma etc... I have sent a letter to him requesting that he provide this information but I have not received a response. Reluctantly we have spoke with a few lawyers who have reviewed my records and each of them want to file a malpractice suit against him and some sort of negligent case as well. Also, to date the surgeon has not charged insurance for his surgical services or the cost of the stimulator or laminectomies performed. I am told that if the surgeon knows he did something wrong and then charges for his services it could be some sort of fraudulent wrongdoing on his part. Either way, I would like to get advice from some of you who have gone through a similar experience or have had to have an SCS removed for whatever reason
Thanks So Much In Advance for you responses,
Greg

[Hooch]

Hi Greg,

I don't know much about the complications of SCS removal.

Take the bastard to court I reckon..

So sorry to hear of your situation.. you are one brave and courageous guy.. my best tyou and your family.

Chris.

[kajari]

Chris, Taking the surgeon to court has always been in the back of our minds but it is something that we will do as a last resort. If the physician does not respond to the numerous questions I asked him in the letter I sent recently then suing him may be our only option. Right now all I want is answers because the surgeons here are reluctant to do any type of surgery because of the complexity of this issue and the absence of information and conflicting information in the surgical report. They are even saying that removing the SCS might be a very risky surgery since my spinal cord was partially flattened and the complications that I am still having (pain banding around my chest and all the loss of feeling as well as the bladder and bowel issues). I am pretty sure the surgeon is not going to answer my questions but it was a last ditch effort to try and find out what happened during the surgery which also caused me to have a T7 thru T10 laminectomy just days after the trial period....he even installed the permanent SCS during this procedure which I was unaware he was doing. I guess I signed the permission for these surgeries but I was on such a high does of dilaudid that I do not recall ever signing any papers. He did not even call my wife to let her know what was going on or what he planned to do. It is a very sad situation.
Take Care,
Greg

[dshobbies]

Greg,

I can't comment on the removal of the SCS. But, and I realize California is thought to have a sue mentality - you have a right to be compensated for the pain your have endured and that will be in your future. You have a right to answers though I can see if the doctor thinks he did something wrong, he doesn't want to answer and incriminate himself.

Legal action might be necessary to get him talking but you might want to consider it for your pain - and future patients that he might consider without complete patient understanding.

And I don't consider myself sue happy, just very righteous.

Good luck, Dale

[kajari]

Thank you so much for all of the encouragement. I just got off the phone with my Boston Scientific rep. They are no disagreeing with the remove of the SCS as they have done everthing possible to adjust the device without any success. I think I am at the point to where I need to put all of my fears, which were generated from the SCS surgery that caused these horrible complications, and go ahead with the removal of the device. The hard part is going to be finding a Surgeon who will take it out. Since we fired the surgeon who did this to me it will be even more difficult for any surgeon to speak with him and get the real truth about what happened or what mistakes were made.

Take Care,
Greg

[Maria]

I don't know if you can get the surgeon to admit to doing anything wrong unless he's sure that it can proved that he did in some way such as with films or someone present at the time of the surgery that's willing to add their input re what they saw (unusual but happens).

If you're trying to get someone else to work with on removal of the SCS what you might want to just work on getting that done because if you mention anything about litigation to any other surgeon or make reference to that I cannot see another surgeon wanting to take over where someone left off where there may be a strong possibility of being involved in a lawsuit. Even if you would have no intention of suing the next surgeon he or she might rather not get mixed up in it.

good luck with all of this!

[kajari]

This is the main reason we have not started any litigation even though we know the surgeon did something horribly wrong. He knows we are extremely angry as my wife and I tried to talk with him on one of my last days in the hospital. We asked him why he had turned his back on us and would not tell us what is going on....at that moment he turned his back and walked out of my hospital room closing the door. He even put a statement in the hospital medical report that I was quite upset with him. Only recently did I send him a letter pleading with him to give us answers to the questions I listed. We will see what happens when I speak with the neuro surgeon here in KY. Hopefully everything will be fine and I am praying that he can maybe remove the SCS and rid me of some of this horrible banding pain and thoracic pain.

[Hooch]

What an absolutely despicable individual. There are certain moral standards we have to adhere to in life, regardless of our profession, and he crawled pretty low on his belly to get under them.

So sorry you are in this situation. I hope the neuro can at least help you with a diagnosis, the very least you deserve is to know the details of your condition. Beyond that it may be worth sending some scans to some of the bigger names if you have access to your scans. I really hope they can do something to reduce your pain levels.

[Maria]

I worked with doctors/surgeons my whole career. One thing I learned was that when they know they've done something wrong or they think that a patient is considering litigation they make sure they have consulted their own attorney as well as the hospital umbrella type of coverage. In fact it's brought up at meetings in teaching institutions and talked about and so forth. Was the outcome preventable.. etc. what could have been done differently, what was done correctly. Very educational for students though have mostly seen that most doctors/surgeons band together in protecting one another when it comes to admitting anything outside this type of educational realm. Not always though it's more the norm.

Realize however I haven't worked for nearly 11 years so what I'm saying is about a 25 year career that ended because of my own back plight however I have felt that sort of attitude myself as a patient with a failed back surgery (like my complaints were unfounded or that of a crazy person and I did sign the surgical consent and risks were explained to me prior to surgery and so forth tho in reality not in depth by any means with regard to the 2nd spine surgery I had and it was right before I was being taken into the OR).

Undoubtedly your surgeon not only didn't like hearing negative consequences he was probably advised not to say anything that might in any way be damaging so just say nothing. That's a pretty common stance for someone to take and in fact it's pretty normal once someone has been around for while practicing in medicine and/or in life in general. The more one speaks the more one is likely to trip him/herself up so either just answer the question with yes or no or don't add anything.

Also it's a very common thing to document that the patient is very upset, unhappy, displeased, came to the office stating xyz and because it can be construed as the patient has some post surgical mental type of situation going on being severely displeased w/outcome even though a consent for surgery was signed by the patient .. yadda yadda and also make it appear that the patient may be threatening the doctor/surgeon. For women I'm sure you've long been aware that an anxious upset female patient that complains can have her behavior described as hysterical. Men are more apt to have their behavior described as disturbed, combative, threatening. This sort of documentation makes the patient appear as though he or she may have or have had an underlying pyschological condition or that they are experiencing some sort of PTSS related to a failed surgery. Of course only a psychiatrist can give those diagnoses however the behavior can be documented that makes the patient appear less credible.

It's called CYA. Seen it done many times. The best way to approach litigation is without letting anyone know that's what one is considering. Reason being is the records are more likely obtainable maybe not to you but somehow and also mostly people aren't defensive and changing records to reflect things (seen this happen too) in a different light.

I don't know whether you've consulted an attorney or not however they can tell you what your chances are for any kind of recovery of $ however most of the time it's very difficult in medicine unless there it can definately be proven the problem was caused by malpractice/negligence and there is permanent damage that can be directly related to whatever the doctor/surgeon did.

Failed surgeries do happen even when the surgical approach is textbook and correct in every aspect. Not that I'm making excuses for anyone just wanted to add this in here as I realized I hadn't stated this when I wrote this originally. Also I don't want to make it sound like I think every doctor/surgeon won't cop to something if they know they did something wrong however I think it does happen. I'm not trying to badmouth doctors and/or surgeons as I worked with very fine Neurosurgeons in my career for whom I had the utmost respect. Cardiothoracic surgery and Neurosurgery were my two favorite specialities that I worked in during my career until I became unable to handle this type of nursing.

Good luck w/whatever you do and however you proceed although IMHO it should be trying to get the help you need and recover your life as best able and when you've got more energy or feel better if you still wish to pursue this type of endeavor tackle it then not now because it will be a big emotional drain for you and again IMHO you need all the positive engery you can harness to focus on your wellbeing (also hospital pockets are much deeper than your own when it comes to litigation I would venture to guess). Back to focusing on getting better as your main objective and having a positive attitude (not badmouthing previous providers) is a good thing to project as well to anyone you see who you wish to have work with you on this endeavor. I do wish you the absolute best. Please keep us posted.