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i am scared

over the past 6 months I have had worsening neurological symptoms (drop foot, altered gait, poor balance, etc.) which I attributed to a possible herniaated disc or rupture at L5. I had been treated for a ruptured disc at the same level 6 yers ago with some of the same symptoms, most notably the dropped foot. I was not overly worried though, as the pain was far less severe, although the gait and balance issues were far more pronounced. I work in sales with healthcare professionals, many of whom treat the specific spine issues I have (degenerative disc disease, spinal stenosis, arthritis, and previous fusion at C4-C6 10 years ago). Despite having significant knowledge regarding my disease state and working with providers on a daily basis, I kicked the can down the road for several months before discussing it with a neurologist over coffee about 3 weeks ago. Given my symptoms and history, he sent me to a common friend and colleague who specializes in pain management (the spine surgeon who had performed my previous surgery and lumbar injections was no longer practicing). As expected, an MRI was performed of my entire spine, and sure enough, L5 was an issue. Unfortunately, it became immediately clear that it was a minor concern relative to the other findings in my MRI report. 2 days later when I arrived to schedule my appointment, the doctor - a man I’ve known professionally and socially for 16 years (our daughters play volleyball for rival club teams so we see each other virtually every other weekend between January and May) - sees me at the front desk and immediately ushers me back into his office. I could tell something was very wrong by the look on his face and his demeanor. The first words out of his mouth were “I’m surprised you’re walking...” With that he started going over the report and the imaging, at which point my knowledge and professional experience (I’ve looked at images and worked in pain management for 2 decades) kicked in and I realized that this train wreck wasn’t in a textbook or a power point presentation at some medical conference, but it was MY SPINE. And it was about as bad as I’d ever seen in an ambulatory patient.  While multiple levels will require attention at some point, the most critical is the failure of my prior fusion at C4-C6 accompanied by the impingement of the adjacent disc and spurs at C7, which have compressed and flattened the cord to the right of the midline. Severe stenosis with cord myelomalacia and atrophy are noted in the report, and the image is truly frightening, knowing the impact of damage to my cord at this level. In addition, my spine is impinged and compressed at several other levels, most notably at T11-12 and L5-S1, which will most likely require surgical intervention as well, but the initial impression from my pain doctor, as well as the physiatrist I followed up with for a disability pre-op assessment, is the the cervical issue is the most dire.

Coincidentally, the PA for the physiatrist made the same comment as my friend (the pain doc) upon entering the exam room (“I’m surprised you’re walking”...).  I think I’m beginning to notice a pattern. The concern of the physiatrist was that my surgical consult was too far out given what he felt was the urgency of my condition, and a call from my pain doc (and a text of a cervical image) helped move up my consult by nearly a month. I have an EMG coming up (unpleasant but necessary) and hopefully after the consult I will have a much clearer view of the timeline I’m looking at for my procedure, recovery, and unfortunately, follow-on procedures to decompress my spine and maintain as much function as possible.  My goals are to (1) maintain my ability to walk - preferably unassisted-and use my arms, (2) to provide for my wife and two teenage children (thankfully I have good health and disability insurance), and (3) continue working as long as I can without jeopardizing my health.  I travel extensively in my present role, and while that may have to change, I still want to have a purpose and a reason to get out of bed each day. I will turn 56 in a few weeks, and I have worked my entire life, starting out as a paperboy at 11 and working my way through high school and college with a 6 year stint on active duty in the military prior to joining my current employer nearly 30 years ago. I want to go on with the life I had planned but I am scared to death that I might not achieve all - or even any - of the goals I listed. At the moment I feel extremely vulnerable, knowing one bad fall or a simple rear-end accident out in my sales territory could result in quadriplegia. And even when I get to the OR, I know my case will be fairly complex given the existing hardware from my prior fusion and the general worsening condition of my cervical spine. I know this recovery and rehab will be far longer and difficult (being 10 years older doesn’t help either), but knowing I will be undergoing further procedures is undoubtedly going to weigh on my mind and I can’t help but wonder if I’ll ever get cleared to come back to work, and if so at what capacity? Will they even keep me on the payroll or just keep me on long-term disability? I have had a conversation with the corporate ombudsman (confidential resource for colleagues) but will need to have another prior to speaking with HR about my status as I initiate short-term disability (when I go under the knife).

It is so much to get my head around.  While I’ve had spine issues and sought treatment for the better part of 2 decades, I never envisioned it being this bad at my age. I had big dreams and plans of an active and financially secure retirement, and now I just don’t know. I have always been a working man, a provider, a leader, and the rock that my family depends on.  I don’t want to be a burden and I don’t want to be pitied. I just want my life to resemble what I’ve been working 40+ years to achieve, and I’m scared to death that it is all about to slip through my fingers. I don’t know, maybe I am over reacting. Maybe it will all work out, my surgeries and rehab will go well, and the health and disability insurers will pay out my claims. But it’s this foreboding sense of doom and the sense that I have little to no control over what is about to transpire that just grips me with fear.  I was in combat in the military as a young man and yet I was never this scared. I know no one can assure me that it’ll be alright, but if anyone has had a history of multiple procedures on their spine with successful outcomes, I could sure use the pep talk right now. I’m not looking to do adventure sports or dance like John Travolta (circa 1977), I just want to walk my daughter down the aisle some day, to walk up and congratulate my son when he graduates college, to slow dance with my wife on our anniversary, to finish my career on my terms and have some healthy years in retirement.  I know my case is specific to me, but has anyone come out the other side of something like this “whole”? Anybody?

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Comments

  • The unknown future regarding your spine is scary for sure but they need to get the EMG, Neurologist, surgeon referral. I say take it one day at a time. Get a care plan what you should be doing from the surgeon and follow his advice. second opinion even. Take care.

    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Youngerone1, Sometimes knowing just enough is not a good thing!  As a past medical professional with 30 years experience I to was put into almost the exact situation at approximately the same age. I had worked in the ER of a downtown Hospital for 12 years as a Paramedic/ FF and had continued my education to become a RN as I waited for my name to finally be chosen to get on the Fire Department. That day finally arrived and I had finally gotten the job I had trained for all my adult life after leaving the Army. I worked my way up to becoming a Lt with the department and was next in line to be promoted to Captain after 18 years on the department. Like you, I had set my goals and what I wanted to accomplish before I retired. All that ended in a split second on 1 call. I ended up with a major neck injury as well as nerve injury to my left arm. So I ended up in the OR on Sept 2, 2014, ending up with a unsuccessful fusion of C-5 through C-7. Fortunately I gained back 50% of strength in my left arm and could feel and use all my fingers! The down side was, I had lost my career and was medically retired at that time. At our age, it is impossible to retrain for a career where we would make close to what we were making. Secondly, who would hire anyone with all the physical restrictions that were placed on? The reason this story is so long is I want you to know your not alone! Unfortunately, this happens everyday in every city. I know your asking “ So what now”? That’s very normal! There’s some common traits among all of us and the pattern is very consistent first Depression, followed by Anger, Then comes the bargaining and finally you WILL find acceptance! Yes, this is a life changing event for you. Some prior goals will be unreachable. But you really have 2 choices, take the positive outlook, or sit and worry and turn your life into a negative existence. In some ways mine was a blessing! Even though I hurt 24/7, I had finally found to stop and smell the flowers and I found out what the most important things in life were! It wasn’t my job, it wasn’t the material things, It was my family and true friends that became the most important things in Life! You’ll find out later that all those material things become a burden later on in life! My first surgery like you, I was terrified! I know I will be having a second one soon and they will add C-4 as well as T-1 and repair again the ones between. This time I am not scared or even worried because I’ve learned what acceptance means! Hang in there and know your not alone. You might find pre OP counciling to be invaluable! Regardless, take it 1 day at a time! Please keep us informed and if and when you need to vent, know we’re here for each other! ..........David

    DavidG

    Veritas-Health Forum Moderator

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  • Thanks to both of you for your responses.  On the plus side I know have a clearer picture of what the near term looks like. My NS has referred me to a colleague at a major medical center due to the severity and complexity of my condition. Turns out my cord is down to 1/5 of its normal diameter through the C5-C7 space, with impingement from both anterior and posterior sides (bone spurs protruding from the spines process being a significant factor, along with the failed prior ACDF).  I should hear back from the 2nd surgeon today (pre-cert was a week ago), and my original NS (someone I’ve known professionally for about 7 years) believes they will do a simultaneous anterior corpectomy/posterior fusion with rods. I found a study online from 2018 (fresh data!) that found superior outcomes with a simultaneous procedure as opposed to a staged approach, which certainly appeals to me for a number of reasons, not the least of which is reducing my time in the collar. Once the recovery period is over (3-6 months), they will asses my condition and need for additional procedures. One colleague felt the thoracic issues will most likely require surgery but held out hope that the lumbar may respond sufficiently to more conservative therapy (i.e. injections). So provided the new NS doesn’t throw me a curveball, I at least have a better understanding of my condition (cervical spondylitic myelopathy) and a potential plan to treat it.  The tough part is waiting out the pre-operative period in which I’m at substantial risk of a life-altering injury, which leads me to the the down side.

    Yesterday I was driving my daughter and a friend to a volleyball tournament (they play for a 15 & under travel squad) and while stuck in stop and go traffic entering the convention de nter, I was rear-ended by a late model Chevy Suburban.  While I can’t say for sure if I experienced any further injury (the girls were fine and my car appeared relatively undamaged), I was pretty freaked out (still am). I was fortunate that the impact wasn’t any harder, but it made me stop and question why I was on the road at all. Granted, this was a personal choice, but my day-to-day work involves a lot of driving (~1,000/week) in many areas in which driving is fraught with danger from poor drivers and road work. While I didn’t want to go on short-term disability until absolutely necessary (pay is reduced after 13 weeks), I am sitting on a lot of vacation days. I decided I would use whatever I needed to bridge myself over to my surgical admission and then start the STD clock.  With any luck I will be cleared for light work in 3 months and may be able to work remotely on a temporary or even permanent basis. That would certainly relieve Lomé of my financial anxiety and allow me the chance to simply exhale and take a look at my future from a different vantage point - huge shout out to DavidG for your story and guidance.  I have to keep reminding myself that I really am fortunate.  100 years ago I would already be dead.  It isn’t an untreatable form of cancer or a neurodegenerative disorder like ALS or Parkinson’s.  Is it going to suck for awhile? Absolutely. Over coffee with a physiatrist friend last week he answered my question regarding corpectomy pain in a refreshingly - and brutally honest - way.  I know the NS might be less forthcoming as they don’t want to discourage the patient or heighten anxiety but I really do want to know everything - including the unpleasant aspects - about the procedures I’m going to have to undergo if I want to improve my function and my long-term prospects for my retirement and possible next career. My life certainly appears to be deviating from my intended course, but as John Lennon once sang, “Life is what happens while you’re busy making other plans”.  And so it goes. 

    Once again thank you both, and while I can’t say I’m not scared, I am certainly less scared and more hopeful. And I guess that is why a forum like this exists.  Thanks to the folks at spine-health.com are in order as well. 

  • nutcase007nnutcase007 United StatesPosts: 947
    youngerone1 - I'm sorry for your sake to hear of your spine issues, especially your recent developments. 
     
    You asked specifically about complex/multiple surgeries.  I've has three ACDFs, the last two because of cervical instability that put me at high risk of quadriplegia.  Because of my medical history (see my profile for more detail), I've had a history of collapsing facet side of my cervical and upper thoracic spine.  I'm in the middle of diagnostic testing to try to determine what to do about my compromised C7/T1 facet joint and other upper thoracic joints.  I'm currently fused from C2 to C7. 
     
    I see from what you wrote, it feels like you have spent the bulk of your career in the "spine hardware" business, I guessing.  It never really hits home until you are the patient.  It sounds like you really have some very good "resources" of friends and work relationships to support you.  You are now the patient.  You need to do what is best for you, even thought at times you are working with limited information.  Do whatever research you need to do and then commit to a plan.  Once you have followed through with your plan, don't second guess your plan.  What is done, is done! 
     
    Assuming you go the surgical route, for your sake, please go with a surgeon that has a proven track record on complex spine cases.  Also, make sure it is a surgeon that you highly trust.  If it requires some travel distance, don't apologize for travelling.  You want a complex spine surgeon working your case. 
     
    As an aside, on my third ACDF, my neurosurgeon who specializes in complex spine issues told me the evening after surgery, once he had my neck opened up, he said to himself, "What have I (meaning the neurosurgeon) gotten myself into".  The diagnostic tests had not given him any idea how bad and complex the surgical site was.  He admitted that he was struggling to give me the care I needed.  All I could think was, thank goodness I had the best complex spine surgeon in this part of the country working my case. 
     
    It's okay to be scared.  I think those of us who know human anatomy and have an above average knowledge of what is involved in these procedures, it hits us real rough emotionally.  If the state of your spine condition allows you some time to work some more with a physiatrist or psychologist, please for your sake, do it.  You want yourself and any support system around you in the best possible state for whatever path of interventional procedure you choose. 

    I wish you the best possible outcome.  Try to be realistic in your expectations....             
  • dilaurodilauro ConnecticutPosts: 13,434

    It is always important to have a surgeon that you have complete trust and confidence in. Spinal surgery has come a long way and so many surgeons are more than prepared to perform any type of surgery.   

    It is true that sometimes, once the surgeon opens up the area they find situations which they did not anticipate.   

    I have also found , which to me has been more important, is the hospital services, the Nurses, technicians, Case workers , PAs and more.  The surgeon goes in and does his work, and perhaps you may seen him once or twice afterwards.  But its the rest of the hospital staff that sees you hourly.

    I think its important to get to know the hospital you are having your surgery in.  Talk to the case workers, talk to the head nurse on the floor for your surgery, etc

    When I had my quadruple heart bypass surgery last year, several heart specialists were mentioned.  Some in NYC, some a Yale... But I decided to go with our local hospital.   I did check into the heart surgeon and meet with him a couple of times before the actual surgery.   I went with him, mainly because I knew I would get more than excellent care from the entire hospital staff.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • boo9989bboo9989 Posts: 576
    edited 03/27/2019 - 2:56 PM

     Younger

        Your post touched me to the core as I've walked in your shoes a couple times and like David said your not alone.

        I injured myself at work back in 2002 I was just 42 years old. At first everyone thought it was just a shoulder injury but after worsening symptoms including weakness in my legs and walking and balance problems after a month and a half a MRI was done of my cervical. I didnt even have to wait for the report as the radiologist pulled me into his office after the scan. I had major cord compression in the area of c5-7.  They did a anterior cervical fusion of c5-7 with a corpectomy to decompress my cord as a emergency surgery. 

      Then in 2003 all heck broke loose my husband was dx with stage 3 metastatic colon cancer. At the time he worked for the Dept of Justice but had to retire on disability. In 2004 his cancer recurred ...at the same time I was told the level above my fusion had collapsed and it too now was compressing the cord. So in May 2004 my husband had a massive surgery at a well know Cancer hospital in Baltimore Maryland  where they totally removed his rectum.  They had to cut from below his chest to his pelvic and from his testicles up to the end of his butt crack...in August 2004 I had 2 cervical surgeries done 1 week apart. First a anterior were they removed the hardware from the surgery in 2002 another corpectomy this time at c4 and new plate. Then 1 week later a posterior with laminectomy from c4-7 using my own bone from my hip. So both my husband and me were laid up. Him though I think far worse then me as he also had diabetes which caused major incision problems.which continued till his death in 2007.

       I did fairly well after my surgery in 2004 other then some on going pain till a little over a year ago when I started noticing problem with dropping thing all the time then the pain started...it took till Jan for me to be dx with adjacent level failure in both c3/4 and c7/t1.  Funny last month I was told the same thing I'm 1 car accident away from being paralyzed. Yes its frightening to hear such things. I am now 57

       My point in posting all this is...you will get threw it. Nothing in life can run on a guarantee plan. You can and will adjust to all the curve balls life has thrown at you. When all these future fear play in your head look around you and see all the good in your life..the love of your family and friends..the thing you do have that maybe other cant have the list can go on and on. That what has kept me going all these years threw many many heartaches and problems. Whenever something get me down I push it back as far as I can and focus on all my positives

      Chances are far greater then not that your surgery will go well and over time after recovering you may see how much better your doing then you realized.  Funny sometime we dont realize how sick or how much its affected us till after we have the surgery.  So focus on your recovery and the love of your family..Life adjust..so you might not beable to get a new car every year..chances are high you will walk your daughter down the aisle.  Funny that was one of my husbands biggest fear...guess what..he walked our daughter down the aisle..

      All of us here wish you the best and please keep us posted

       

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