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T-10 to S-1 spinal fusion Scared!!

CatwalkCCatwalk Posts: 2
edited 03/24/2019 - 9:33 AM in Surgery Buddies

Hello y'all~ 

I am new to this group and feel very fortunate that I found it!!  I'll try to keep my story brief, I was diagnosed with scoliosis at age 16, but did nothing about it.  I had my second child at 40 and am now 58.  After my daughter was born, my back really began to hurt so I sought out a Pain Management doc that gave me numerous shots for several years.  It worked for awhile but then the shots became useless.  I ended up having an L-4 to S-1 fusion in 2010.   My back was great for about 4 months until it really began to hurt and I had pain shooting down the left side of my left leg.  The doc told me that my fusion was healed and if I had pain I needed to go back to my Pain Management doctor.  The Pain doc gave me injections over the years, prescribed pain meds that didn't help much and I even had a TENS unit and morphine pump installed in my body.  The TENS unit didn't help much and the Morphine pump helps a little bit, but I still ended up on disability in 2013 having been diagnosed with FBSS, Failed Back Surgery Syndrome.

I have a pretty high tolerance for pain.  You can't just stop living.  I force myself to get out of the house and run errands. I do my best to keep my home neat even though it hurts. I keep the pain mostly to myself. I try not to complain because I know my family would just get tired of hearing me gripe about how much I hurt, but the pain would get so bad that I would actually pass out and have broken my arm twice from hitting the ground.  

In the past year and a half, the pain has gotten worse so I began the search for a new Neurosurgeon. I went to 3 different docs and got 3 very different opinions.  One doc told me I needed to be fused from top to bottom, another told me that I needed an L3-L4 fusion and the 3rd said I needed to have a T-10 to S1 fusion.

I am so confused and I'm still weighing my options. I will be completely honest too - I am more than than a bit scared. I have another procedure on 3-27-19, and I need to make a decision pretty soon.  I just hurt so much and need to get this taken care of.

Thank you for letting me vent.  Like I said, I don't complain much, so this a good place for me to be honest and get some good solid advise. Any and all comments are welcome!!!

Thank you so much!

Catwalk


 

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Comments

  • RangerRRanger on da rangePosts: 248

    Catwalk, I totally understand your confusion and being a bit scared, that is normal for any of us.

    Before my last fusion from T-11 to S-2 with pelvic fixation 8 neurosurgeons and orthopedic surgeons met to discuss my case. One recommended a small lumbar fusion but others knew it would be short lived with another revision required soon after. One recommended a complete top to bottom although I'm already fused from C-2 to T-3, so it would have been from T-3 to S-2. The majority recommended from T-11 to S-2 so I chose that route. At almost 2 years post-op I made the right choice but with severe OA I know it's probably not my last. Every single joint in my body has/is being affected by this horrible disease.

    Try and stay active as you are Catwalk, a body in motion stays in motion, or as I often have said, "use it or lose it." Keep us all posted here on your journey and what route you decide to take.

    Be strong, be safe,

    ranger

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  • Hi Ranger,

    Thank you so much for the response.  I'm not current on all the verbiage so could you tell me what OA is?  

    I'm really leaning towards the T-10 to S1 fusion.  The doc that suggested the L3, L4 fusion told me he would not do the T-10 because he didn't think it would help with my pain.  Yet, the doc who wants to do the T10 told me it was the best option for pain relief.  Why is it that 2 Neuro's are on such opposite sides of the fence?  Which doc is right, which one is wrong??  It makes me question everything!!t

    From most of what I have read on this forum, the people that had the fusion closest to the one I may get, are happy they did it, including yourself. I do worry about the "Domino effect" as in I get this fusion and within a few years have to fuse a level higher, then another level higher and so on.

    I am staying active despite the pain.  I just suck it up and keep going!

    Again, thank you for the advice, it is much appreciated!!

    Catwalk

  • memerainboltmemerainbolt IndianaPosts: 3,403

    Catwalk

    I am so sorry you have had to keep all of this inside. Vent all you want to here, we all do it. Scoliosis hit me at age 65, I'm now 70. With all of the other spinal and health issues, I was not a candidate for surgery. I also went with a pain pump as I did not want to be on opiods the rest of my life. It helps a lot but there is still pain from other sources.
    OA is Osteo Arthritis. I love your attitude, so positive and outgoing. And stay that way. It will help you down the road.

    Good luck and please keep us posted on how you are doing.

  • Hi Catwalk - Welcome to this fabulous, friendly and helpful forum, but sorry you had a reason to find this forum.  I was diagnosed with a rapid onset scoliosis at age 58.  I say rapid onset because 3 years earlier a random back x-ray showed a very minor curve that no one seemed concerned about and really didn't even comment on.  But 3 years after that x-ray I had such severe pain in my left calf that I couldn't stand for more than 2 minutes.  Walking around or any type of movement helped lessen the pain and bending over to touch my toes completely alleviated the pain within about 20 seconds.  But you can't live your life bent over touching your toes, haha.  So off to an orthopedic spine surgeon I went.  New x-rays showed a significant curve of 58 degrees in my lumbar spine.  I didn't really get any other opinions other than talking to a second surgeon in the same orthopedic office.  Three months after diagnosis I had a 10 level T9 - S1 fusion to straighten and stabilize my spine.  My curve is now 1 degree and I am almost 1-1/2 inches taller.  My calf pain was gone when I woke up from surgery and has never returned.  I'm guessing that was due to my sciatic nerve being impinged upon by my collapsing lumbar vertebrae.  Now that they are back in the correct position the nerve is freed up.  In my case, I didn't feel I had a decision to make.  Deep down I felt this surgery was my only option because my curve was moving fast, my pain was getting worse and my age was a factor being that I was post menopausal.  I didn't want to chance waiting too long until I was disabled by the pain and then not be a good candidate for surgery because my bones were "too soft".  My surgery was a success, I'm glad I did it and I have had no second thoughts.  Just living my life with my "new normal".  BTW, you may find similar stories to yours in the "Scoliosis" section of this forum.  Several members with long fusions post there.  Glad you found us!

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  • RangerRRanger on da rangePosts: 248
    edited 03/26/2019 - 8:54 AM

    Catwalk,

    memerainbolt & urbmshr also offered some very good information here. I'm not going to tell you which surgery is best for you but I back you on you leaning towards the fusion of T-10 to S1, because of your age and inevitable adjacent joint degeneration, you really want to avoid a long fusion as you get older and even if you'll be a candidate by then. I have complete confidence in my surgical team so my decision was a no brainer when my surgeon presented me with 3 options. You seem to be very active as you can be, keep that up, it will help you immensely in your recovery.

    I am still very happy with the results of that last fusion, I still feel I'm very productive although I do sometimes have to approach my projects in a different way and adjust my workout routines to insure I don't wreck myself and cause further damage. It's certainly better than the alternative.

    Keep us all informed Catwalk, we always like to hear more positive outcomes.

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 259

    I agree with Ranger! I'm fused 4 levels in the neck and from L2-S1 and my lumbar surgeries were typically done one level at at time, I think with one exception and I had L5-S1 fused twice. Recovery was brutal for me, especially the pain management so this last go around my surgeon did 2 levels in the neck plus a lumbar. I think I'd rather get it over with all at once but that's just me. Whatever you decide I wish you the best of luck! Jerome

  • So Catwalk, maybe you and I will be surgery buddies!  I am scheduled for June 5th fusion of T10 (11 if I am lucky) to S1 with the pelvic fixation stabilization. Went to a chiropractor 12 ish years ago who had an x-ray on the screen of a spine.  I remember thinking, that poor person. I commented and she said that's you!  I said, "no way"! Yep!  What a mess! But I don't look that way on the outside, which is a blessing.  Never had problems until another chiro  5 years later attempted to realign my hip.  No problem May, could barely walk in June and screaming just to put my foot down.  Realized that you don't mess with a body that isn't in pain to fix what it has already adjusted for workability.  Saw an orthopaedic surgeon who pointed out issues down the road. The way I calculated it, it would be another 70 years before the curvature would need surgery but didn't plan on all the other problems that were included with the scoliosis, like bone spurs, DDD, stenosis, twisted vertebra, etc. so it came on sooner than later.

    Had an epidural a couple of times and hip readjusted itself to no issues.  Eventually though, discomfort began across my butt. Referred to surgeon who's specialities are tumors of the spine and fixing other surgeons mistakes.  I did yearly visits until I found I had carpal tunnel.  Read that issues may come from spine so had it checked which showed a bone spur against my spinal cord.  No messing around waiting on that surgery.  Now fused C1-2 at birth and 5-7.  I was told it was time to proceed with the rest due to the multitude of problems that time would create if I waited any longer.  My mother is bent over from many of same issues. I love her but do not want to grow up to be like her.  So now it is!  

    My family requested that I get a second opinion so I went back to the first surgeon (who is part of the team of Drs for the Titans).  It had been 5 years since I saw him.  He said he speaks with my Dr. several times a week to collaborate on patients care and he wouldn't hesitate to have him do his surgery.  So I had the right one to begin with.  I was also told that we would not do different sections at a time. It would be a one time experience.  My preference as well. I think of this as making a one time purchase instead of monthly payments.

    It seems like my summer vacations are all surgeries these days.  Have bilateral knee and a hip replacement to deal with the 2 fusions. Yoga movements aren't in my wheelhouse these days!  I do see a few obstacles ahead but determined to overcome them. Life must go on and I cannot burden my family with my medical issues without striving to show them I'm a fighter (like my dad who was a Seal Team Instructor).  I too have a high tolerance for pain except for headaches, then I'm getting the tylenol immediately. I am finding that this site may be an excellent place to just have a voice since we are trying to protect loved ones in a way.  Your family loves you but they just don't know how to fix you or help you out of the place your in.  We have the physical problem and our inner voice to address. Others can be as stressed from the concerns of the unknown and how to care for you over the course of surgery and recovery.  Their living much of it with you too. So I try to stay strong for myself and their sake.  We are a very negative world, thus it becomes my challenge to always look for something good, positive to take away from every situation if possible.  Find the humor along the way. (Got married on April 1st) My surgeon said I won't be able to do anymore cat stretches.  My comment was that I didn't like cats anyway!  

    Currently, I am trying to be proactive towards being as healthy and as strong as I can be before surgery.  Down to only 39 days.  Work out at the gym 4 days a week doing as many core exercises as I can.  Quads, glutes, abs and arms will be critical for limited abilities from what I can tell with PT.  Walking is a priority.  Always trying to beat the record on quick recovery for bragging rights.  Was driving in 2 weeks after knee replacements.  Had a hip replacement on Tues. and went back to work on Mon.  Unfortunately, had a torn tendon so had to use a walker for 6 weeks.  Put stickers all over it with an outrageous fabric covered box for materials I had to carry around in school. The cervical fusion took 6 weeks as well but this one is definitely questionable.

    I am anxious, more by the unknowns than the actual surgery and how to do anything that requires a major change in how I do it now. (I throw things down just to be able to bend down to pick them up because that will change once those rods are in there.) 

    I have watched a few videos to prepare myself.  Not too pretty.  Supposedly, I will be replacing over have of my own blood with transfusions. Then cement is injected in the T9-8 to keep me from curving forward from gravity as time pushes on. (I want to know how many pounds this is going to add to my scale!)  I just hope those individuals were supercharged to provide me with energy galore!! :) Don't want iron tired blood! haha I do have moments of sadness that this is one more physical thing to deal with but it isn't diabetes or cancer. I'm fixable and I'll be taller! Going thru the airport will never be the same though. :)  The medical field is always improving so we are fortunate with the advancements now.  I have ocular histoplasmosis syndrome, which I call "bird s*** eye":(  It mimics macular degenerative eye.  I have been getting eye injections for 13 years now. I always ask if I can close my eyes so I don't have to watch!  But instead of every month I'm up to every 2 and I still am so blessed that the other eye is perfectly normal.  I have talked to those who have the problem in both eyes. I can't imagine only having peripheral vision.  Look for an upside to as many things as you can.  It will get easier.

    I am dreading the thought of pain I experienced with the cervical fusion.  No problem 2 weeks in but I stretched like a cat waking up one morning without thinking, heard a pop with excruciating pain I have never felt radiated in my neck.  I thought I was on fire literally and someone was shooting straight pins from a machine gun. Gabapentin was the answer.  I was told that the issue was nerves healing.  Hadn't planned on a mob scene.  One at a time would have been preferable.  The tip of my thumb is numb from the surgery that I didn't have prior.  Now that this one is recovering, what will this next one be like?  I am very hopeful that I won't have to experience that one again.  Hubby feels so helpless in that kind of situation that he'll bring me dark chocolate to sooth the beast.  Wish it worked!

    My other take on this is that extra wrinkle here and there on the face is coming on way to fast from the stressors of all the medical problems much less just the daily living so no more negativity.  I definitely cannot afford the plastic surgeon. I just wish the Dr had connected my neck parts closer together so I'd already had a neck lift instead of creating the problem. And this too shall pass....we will then be where others are now sharing our medical experiences, helping, reassuring, and encouraging what we encountered and how we overcame to conquer the beast.  Then we move on into the new norm,  being blessed just to be moving forward again.

    I find that by trying to encourage others it reinforces how I must handle these obstacles as well.  So I thank you for allowing me to share what I too must do to get through this as well.  Blessings, Z 

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