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  • Jtal19305
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    Post count: 43

    I have this dysesthetic pain in my feet. The pain will vary and wax and wane. It will be in my left foot in the morning and by evening it is also on the top of my right foot and more pronounced aching pain in the sole of my left foot. The pain will travel to the lower legs just below the calves. A neurosurgeon I saw yesterday at a major teaching hospital in Philadelphia could not explain my pain nor tie to the surgery I had at T12/L1 or L2/L3. He seemed to think that nerve root injury at T12/L1 would cause pain along a longer path and include more of my leg. He thought I was decompressed at T12/L1 although my cord now “kinks” around the disk bulge at T12/L1 which I gather is the annulus and PLL (posterior longitudinal ligament).

    The dr. indicated it could be RSD or CRPS caused possibly by the needles used for the neuro-monitoring during my surgery or some local trauma to my foot. He stated that it would not get better as it has been almost one year since surgery. He seemed to believe a scs could help and would involve a little more risk to install as the entry point would have to above T12 (my surgery and instrumentation level) where the space in between the vertabrae is narrower but he could still do it. He did mention that leads could puncture my cord and cause paralysis. This was not too reassuring to try out the procedure.

    He also referred me to a pain doctor in the area. I was told the a sympathetic nerve root may help as it may act on the nervous system like re-booting a computer. Is this reasonable?

    So I continue to struggle although I am being as patient as possible to allow time to heal, which in most cases, time does heal. However, I am concerned that my nervous system was “knocked” out of its normal operating range, and is malfunctioning causing the pain signals to fire recklessly. It has limited or no ability to self correct from what I can gather. Unless there is a way to get it to adjust to what it is correct.

    Have you ever encountered anything like this or heard/read of this in medical literature? I am going to continue searching for help, and to find a solution for this.

    Jtal19305
    Participant
    Post count: 43

    Hello dr Corenman
    In my case the procedure at T12-L1 was done through the back and an interbody fusion was done whether I needed it or not despite the risks you stated What would signify a nerve root symptom versus a spinal cord symptom versus a nerve symptom? In my case my left sole of my foot began a burning pain after the surgery and the dysthetic pain in my feet and lower legs continues to this day albeit the intensity of the pain is less than day one but still unacceptable. With the hardware at T12 L1, is it even feasible to install a scs? And if so would it help the feet? I’ve read good things about nevro hf10 unit which works at higher frequency and is less dependent on location. I have been patient but I’m concerned about symptoms. I was told only a ct myelogram would be definitive enough due to artifact from the pedicle screws and rods in my spine. Some tell me there are risks of further damage doing this imaging. I just wonder if something was accidentally cut or bruised while doing the decompression, removing the bone and disk. Or if this created more instability causing nerve compression which is the reason for my pain. One doctor mentioned that the mere opening or decompression of the cord could cause it to miscommunicate leading to pain. I find this counter intuitive as taking pressure off the nerve should relieve pain. I find myself confused and feisty over the approach my surgeon took because of the nerve injury risks despite this being a standard option. I am also finding that it is hard to get a new doctor as most will not see a patient until one year or more post surgery from the care of the original surgeon. I’m living in a new area so I need a new specialist. I’m almost at my one year mark. I hope to get better but I’m losing hope due to constant pain. Thanks for your input and advice. It is most helpful.

    Jtal19305
    Participant
    Post count: 43

    Hi Dr Corenman
    I understand if you are too busy or discouraged to address my questions. I’m happy you addressed many of my questions. I’m in the Philadelphia area back to work part time and ramping up. It’s good to be back at work and my coworkers have been great welcoming back. Many were startled such a health event happened to me. I could not tell them that I’m recovered. I tell them I’m still recovering and have pain. Yes I still have the burning pain in my feet and legs. It’s frustrating and scary. I hope you are right in that it will take time. I do notice that some days are worse than others and it is hard to say if I’m getting better. It’s hard to tell that on a day to day basis.

    I’m planning on seeing some a new neurosurgeon at both Thomas Jefferson University Hospital and Temple University Hospital. I hope to get some high level diagnosis, examination and review of my imaging. I’m also hoping for medical management. I recently had an mri with my surgeon and his PA put me on a 3T machine. I told her the concerns due to the pedicle screws / rods. She said it doesnt matter. I really don’t think she knows much and it’s scary to think she assisted my doctor during my surgery.

    So I’m hoping the neurosurgeon at thomas jefferson can assess me and recommend a plan. I did get dr green and Dr Vanni from Univ of Miami to review my imaging but I have to schedule an appointment with Vanni to go over my options. I plan to do that as well. I’m hoping the doctors at thomas jefferson can shed more light on my condition. I feel I was not sufficiently decompressed as the disk protrusion at T12 L1 is very evident and the new mri shows disk contouring toward the cord. My doctor mitigated this finding by saying he stills sees csf signal around the cord despite the compression. Is he right?

    I just cannot stand this burning biting tight squeezing and diffuse pain in my feet, calves and left thigh. I get the diffuse burning in the heel of my left foot but have the pain occur in my right foot too on the top of the foot. I wish I could wake up one morning and the pain would be gone. The human body should not be in this pain state. I hope my body adjust and the nervous system can reset and I’m normal again.

    I’m also willing to consider surgery again to remove this is evident disk bulge at T12 L1 which was not addressed during my surgery. I would do this if my pain is not better by 2 years and if I have a confident and capable surgeon with a good plan. I know you said these surgeries are fraught with risk but there must be a surgeon at a top notch center that can do this. I see them going in anteriorly or with an xlif approach. One surgeon suggested this could be done using endoscopic surgery.

    My hope is to get a plan from these top institutional doctors that has a good chance of resolving this. Of course if I get better naturally I would be more satisfied. But my body feels strange. I can’t explain it. It’s like I don’t understand it anymore and the pain does not seem to be getting better at an acceptable rate. I’m 7 months post op and from what I read pain after 3 months is failed back surgery. So I hope I can get some hope here.

    I just want to know your thoughts. Am I not being patient enough? Should I just try to accept this terrible pain that does not respond to meds or PT? Should I go to Japan where they deal with this kind of issue. Does my previous surgery create an impossible situation for further surgery? There must be a surgeon and center that has dealt with issues like mine. I can’t be that far gone. I feel cheated by my doctor who could of used a better approach. He keeps defending his work and mentions other surgeons are doing these surgeries from the posterior more often now. I just don’t find him believable or trustworthy.

    I appreciate any input. I will share the feedback of these two new high level neurosurgeons.

    Thanks
    Jerry

    Jtal19305
    Participant
    Post count: 43

    Dear Dr Corenman
    So the latest observation from the recent mri is that the annulus or disk is still protruding into the spinal canal at T12-L1. One can see a slight indentation on the right side of the cord from the posterior. A different doctor than the one who did surgery pointed out that there was still csf evident around the cord despite the compressing disk. The doctor indicated the area was tight but not “crazy” tight. He pointed out to surgically correct this would require him to remove a rib a d go in through the side and land on the disk between T12 and L1. He would have to remove the interbody cage and extract the offending disk material that is infringing on the canal.

    He said the odds of nerve damage would be 1 in 100 and said that is too high to Warrent doing thr surgery for pain. He also said there could be a csf Leak.

    He said he would of done the original surgrry differently but did not elaborate. Do you know what other approach could of been take? And would that be better outcome than my posterior approach?

    I’m really suffering all the time with the burning pain and fasiculations. I’m willing to wait a year from now or a little longer to see if I improve. But if I don’t improve I seriously thinking of having the surgery with the best surgeon I can find. What do you think? He also suggested neuro modulation trial. Amy thoughts?

    Thanks
    Jerry

    Jtal19305
    Participant
    Post count: 43

    Well I had a short visit with my doctor. We discuss the spurs at T12-L1. He indicated they are traction spurs and they are behind the PLL. They form due to segment instability. He like yourself said they should melt away over time as I had an interbody fusion at T12-L1. The MRI I had yesterday was on a 3T machine despite my concerns about interference based on your earlier advice. None the less, there appeared to be some posterior slight compression on the right side of the cord in the axial view between T12 L1. The doctor wasn’t ovey concerned because he still noticed a csf signal around the cord albeit not very wide.

    He had to leave for an unexpected emergency so my appointment time was cut short. I told him of my on going pain in left foot and calves. He seems to think it will improve but slowly and to give it more time. He didn’t elaborate on the traction spurs but did say like you they should “melt” away. I hope that is right as I could use all the help I can to get more canal space. One thing to note that although the spurs seemed to jet out into the canal in the saggital cat scan image, the axial cat scan image did not show the spurs are prominent. Why is that? They were also very centered in the vertabrae.

    I also got an old mri report yesterday from 2011 that I had done at the same imaging center that did my mri yesterday. Apparently I had these issues at L2 L3 and T12-L1 back then but did not follow up for some reason. I think the report never made it to me. I shared it with my doctor and he wasn’t alarmed. I don’t know if I could of avoided all that happened. He also said that it was likely my scoliosis as an adolescent put stress on T12-L1 as scoliosis effects the thoracic spine and my curve was to the left.

    Learning all this I regret getting the chiropractic treatment back in June which may have triggered my leg weakness. Had i been aware I would of avoided many things that could cause extra stress.

    Bottom line is I had the posterior decompression at T12 L1. The PA says nothing is behind my cord as it was a full laminectomy but I don’t see the cord taking over that extra space as much. Does a posterior decompression work well at T12-L1? I recall you saying it does with fusion. My doctor still insists he didn’t have to touch the cord and that many surgeons are moving towards posterior approaches for thoracic Decompressions. Is this so?

    So I’m dealing with constant nerve pain of the burning kind that does not respond well to meds brought on by a surgery I had for leg weakness that may have been due to a transient shock or inflammation due to a chiropractic treatment. All this could of been triggered by something else I imagine. I am told the to wait and be patient and that these things could take up to 2 years to heal. Im learning as I go through this process mainly because of doctors like yourself who are caring and generou, and have an understanding of the fears and concerns of those who suffer in pain. I’m seeking answers and an understanding of how I got here and how I can get as pain free as possible. Yes I can walk and use the bathroom on my own but I wonder if I overreacted to symptoms that may of gone away on their own. I had a decompression surgery in an unusual and delicate spinal level none the less and assumed the risks. My life has changed because of it.

    Those S1 and other nerve roots follow along the cord in the thecal sac as the cord terminates at l1. It seems to be me that the posterior decompression would allow the dura sac enough space.. With the lamina removed, does the tissue that forms in its place inhibit the decompression? Will this tissue soften up over time or the other way around? I just can’t understand why I still have cord that appears indented on the right side when the whole back roof has been removed?

    Sorry I am getting long and wordy here. Just seeking answers and hoping to improve. Never been in this position and hope whatever is said here may help me and others.

    Thanks
    Jerry

    Jtal19305
    Participant
    Post count: 43

    Dear Dr Corenman
    After some further reading of my own I am suspecting these beak like spurs protruding from center back edges of the T12-L1 vertabrae to be ossification of the posterior longitudinal ligament. I’m not sure but it matches the description from other images I’ve seen in line. I can see this clearly in mid line saggital view of my post surgery cat scan Images. I know this was discussed as being bone spurs. But a ligament runs along the inside of the vertabral canal next to the spinal al canal. I’m wondering how this bone from the vertabrae breaks past this Ligament? These beak like spurs are pushing into my canal even in the post surgical imaging. My surgeon did not order a cat scan prior to surgery so his posterior decompression at T12 L1 did not directly address this feature. I also read that OPLL is challenging to address surgically but can be. I’ve also read that they can spontaneously diminish over time. http://www.ncbi.nlm.nih.gov/m/pubmed/24384668/

    I am wondering if this is my case and If the decompression surgery I had created an imbalance such that the OPLL now has caused more compression into my spinal cord. I have symptoms that are diffuse burning pain in the S1 area of my foot, back of my calves and my left outer thigh. I have the calf fasiculations very often.

    What should I do about it? Can it be removed? I read that OPLL is more prevalent in Asian countries such as Japan. Should I leave it be and see? Is there a specialist in the Philadelphia area that treats this as I will be moving back there next week to other home. I will not be at my home in sunny South Florida for awhile. I really appreciate all your help as I try to unravel this mystery. I am communicating this to my surgeon but he seems to be defensive and dismissive of my claims and concerns. I just want honest interaction and to get better. Can you explain why this Ligament would become jepordized and take on this kind of appearance? Is it that the ligament became hard and brittle and gets like that. Also could those protrusions be bone growths off the back of the vertabrae? I have a clear picture of it from my cat scan that I could email to one of your staff or post in drop box. Again thank you for taking the time to address my issues. I know this forum is not a substitute for direct.medical medical care with a doctor. I am following up with my doctor about this as well as other doctors that I plan on seeing in South Florida. I also plan to find a new specialist in the Philadelphia area that can handle my case. I believe if a proper post op diagnosis can be made to define my condition, I can get this treated more efficiently and my disability benefits and request can be more successful. I look forward to your reply. Thanks!! Jerry

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