Harrington rod surgery 40 years ago

Posted by peggy87 @peggy87, Aug 10, 2023

I am 53 years old, had Harrington rod for severe scoliosis about 40 years ago (from T3-T12). Had cervical spine fusion of C7-T1 a few years ago. Now facing extension of rod from T12-S1 along with fusion of SI joints at the same time. In addition, I have Rheumatoid Arthritis (RA), which creates some issues due to having to hold meds for surgery.
Has anyone else had this done? I am trying to understand the life altering movement challenges afterward (and anything else I should know beforehand) and would love some feedback. Thank you.

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Profile picture for martie67 @martie67

@ccchang Hi, glad to hear from you and to know someone else @ 13 had same surgery. Sorry to hear about your 2nd surgery & not doing too good. Well about 5 yrs ago they wanted to do another surgery for my back L 1-5, but they were not optomistic (only a 40% chance) of me walking after surgery. So i opted for no surgery with those odds, cuz I am at least still mobile (with Cain) but can walk. Yes I cant walk for long periods or up stairs very much (well slowly) but I'm on my feet. But my legs are still knumb,my neck (C5-6) discks, etc. & many other issues are a major problem now. So my neck step is they are speaking of surgery Cervical spine, etc. We will see what my options are next week. To be honest at almost 59 yrs old it's a lil scary, but all I can do is to continue with a positive attitude, & my weekly 2 hr massages (she is amazing & keeps me functioning), she has been therapist for past 17 years & knows my body very well. Best wishes for your MRI this Friday, keep me posted. I have mine tomorrow.

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@martie67 Oh, we are so similar! Harrington rod surgery at age 13 and I'm also almost 59 yrs old too! But I think my Harrington rods may be more extensive because my lower one goes to L4. My recent XLIF surgery was L4/L5 (disc replacement and cage). I tried many many things (various doctors, contraptions, etc.) in the past 5 years to avoid surgery, but right now I am trying acupuncture (again) and recently purchased a red light therapy mat as well as stem cell patches. If you have osteopenia or osteoporosis, reminder to keep your bones strong too! Best wishes on your MRI tomorrow, too.

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Profile picture for nlback22 @nlback22

@ccchang
Cori, I am so sorry to hear that you are not doing as well as you could be. I hope your upcoming MRI will shed some light. 🙏
If I sit too long, my back will get sore (usually the next day) but it's nothing like the chronic pain I use to have. I need to do what my husband suggests--set the timer to remind me to get up and walk around.
Last month, I transitioned from ice to heat since I was feeling so good, but I went back to ice, as for some reason my back was feeling sore more often than previously. It takes a long time for these backs to heal!!

You may have noticed, in my note to Martie, that the pre-surgery numbness and tingling I had in my right calf and foot are still with me. My surgeon said all my pinched nerves are free. But it takes a long time to recover and sometimes they never do.

My Pain Management doc said we're talking years not months. I am taking the same drugs I mentioned early on--all for nerve issues. (Pregabalin, Duloxetine and Low Dose Naltrexone)

Best Wishes!
Nadine

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@nlback22 Nadine! So good to hear from you. I'd been thinking to contact you to ask how you're doing. I'm so glad that your chronic pain is less. Do you have a heating pad? I love it. I use it before bed, while my husband and I are watching tv, I do my PT exercises on it. You might also try red light therapy. I haven't yet but hear good things about it. In the back of my mind, I keep thinking about contacting and applying for Mayo but as you can imagine, since the first one didn't take, am hesitant about getting another surgery. Would've loved to see your doc, but he's too far away. Are you able to drive with your foot numbness? I've had to stop since July which saddens me and is very inconvenient. So even though I've heard that I need to be patient (in case my nerves are regenerating), I'm nervous because what if they're not. I don't want my nerves to die and be beyond repair.

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Profile picture for cori @ccchang

@nlback22 Nadine! So good to hear from you. I'd been thinking to contact you to ask how you're doing. I'm so glad that your chronic pain is less. Do you have a heating pad? I love it. I use it before bed, while my husband and I are watching tv, I do my PT exercises on it. You might also try red light therapy. I haven't yet but hear good things about it. In the back of my mind, I keep thinking about contacting and applying for Mayo but as you can imagine, since the first one didn't take, am hesitant about getting another surgery. Would've loved to see your doc, but he's too far away. Are you able to drive with your foot numbness? I've had to stop since July which saddens me and is very inconvenient. So even though I've heard that I need to be patient (in case my nerves are regenerating), I'm nervous because what if they're not. I don't want my nerves to die and be beyond repair.

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@ccchang
I understand your concern about the numbness. It is my biggest concern. Not driving because of it must be very disappointing for you. I am driving very little, at this time, due to a shoulder issue, my leg wood be fine.
( The shoulder will be taken care of in the future. )Are you taking any drugs for the nerve issue?
I do use heat as well-- before at-home PT exercises and occasionally at other times as hear is really good for healing. I thought about looking into red-light therapy, too.
Cory. depending on what your MRI finds, you may want to look at the Mayo Clinic in Phoenix. Sherry had really good results with Dr. McClendon.
Keep in touch!
May you get good results🙏
Nadine
Ps. In February, I am going to start Acupunture again--hopefully. it will provide some relief.

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Profile picture for nlback22 @nlback22

@ccchang
I understand your concern about the numbness. It is my biggest concern. Not driving because of it must be very disappointing for you. I am driving very little, at this time, due to a shoulder issue, my leg wood be fine.
( The shoulder will be taken care of in the future. )Are you taking any drugs for the nerve issue?
I do use heat as well-- before at-home PT exercises and occasionally at other times as hear is really good for healing. I thought about looking into red-light therapy, too.
Cory. depending on what your MRI finds, you may want to look at the Mayo Clinic in Phoenix. Sherry had really good results with Dr. McClendon.
Keep in touch!
May you get good results🙏
Nadine
Ps. In February, I am going to start Acupunture again--hopefully. it will provide some relief.

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@nlback22 I'm not taking any drugs for the nerves, just vitamin B12, magnesium and D3 which I read are good for nerves. I'm going to purchase / try R-alpha-lipoic acid too. I visited a neurosurgeon today but he didn't have much to add. He reviewed my pre-surgery CT scans and MRIs and said that he feels my surgery was the right one. He also mentioned the con about having surgery far from home, which is that it would be harder to have follow ups. But yes, after my upcoming MRI, depending on what Dr. M says, I'll consider Phoenix.

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Profile picture for nlback22 @nlback22

Hello Martie, I had Scoliosis surgery (T2 to L2) along with a Harrington implant in 1977.

Everything has been fine with that section of my back, but over the years, I started experiencing pain below my spinal fusion. The initial pain was due to a Bulging Disc in the early 90's that was managed with physical therapy for years. In 2022, I started experiencing a different type of pain, and consulted with the Orthopedic Chair at the local university medical school. L2 - S1 had a multitude of problems, including DDD, spinal stenosis, lateral listhesis spondylolosthesis, flat back, Bertolotti's, Tarlov cysts (asymptomatic), et cetera.

I went through the conservative management spectrum--physical therapy, and nerve block injections to potentially identify nerves for ablation. Unfortunately, with the complexity of my back, the specialist was not able to find the source of my pain.

I sought a second opinion from a top tier hospital and went through the same routine.

Next --Surgery was recommended. Unfortunately, the Ortho Chair no longer did cases like mine. He recommended a younger doc that had limited years of experience.

After I expressed a concern, I was referred to another surgeon with more experience. The surgeon planned to remove all my existing hardware and replace it with new hardware, while correcting the issues in my lower back. As my prior rod and fusion were fine, I was reluctant to have my hardware removed.

This led Dr. Jeremy Fogelson at the Mayo Clinic in Rochester, MN.

Dr. Fogelson planned to leave my existing hardware in my back, correcting my problems and fusing my back from my T10 to pelvis. Additionally, due to the arthritis in my Sacroilliac (SI)Joints, it was recommended for me to have my SI joints fused.

I had my SI joint fusions with Dr. William Cross on day one ( 2 hours max) and the spinal surgery with Dr Foegelson on Day 2. ( 11 hours)

Fast forward--that was exactly 8 months ago. My chronic pain is gone. I do occasionally get sore when I sit for too long. I am so happy I had the surgery. I still need to ice periodically. I am walking 2 miles a day, and doing strengthening exercises.
I had some right leg numbness and tingling in my calf and foot before my surgery and that still remains. I have been advised, by several doctors, that nerve recovery can take 1 1/2 to 2 years--and it may never go away. ( I should not have waited so long to have the surgery--but I had/have Osteoporosis and was on teriparatide to strengthen my bones before and after surgery.)

I highly recommend Dr. Fogelson as he focuses on Scoliosis and complex cases.

Best wishes!
Nadine

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@nlback22
Thank you for all your input and information, everything you mentioned including stenosis I am there I have everything you named. For bow we concentrating on my cervical & nerve root to see how extensive it is. I shuld have more answers next week as all scans were completed yesterday. I will say it is scary as I am no longer 13 and have delt with everything all my life but it is now to a point of excruciating pain & feeling helpless.I am so happy your surgery worked and you are pain free for the most part.

Best wishes,
Martie

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Profile picture for cori @ccchang

@nlback22 I'm not taking any drugs for the nerves, just vitamin B12, magnesium and D3 which I read are good for nerves. I'm going to purchase / try R-alpha-lipoic acid too. I visited a neurosurgeon today but he didn't have much to add. He reviewed my pre-surgery CT scans and MRIs and said that he feels my surgery was the right one. He also mentioned the con about having surgery far from home, which is that it would be harder to have follow ups. But yes, after my upcoming MRI, depending on what Dr. M says, I'll consider Phoenix.

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@ccchang
Hi Cori,
I am sorry to hear the Neurosurgeon didn't have much guidance.
Thanks for the reminder about B12, D3 and Magnesium. I get some of each in my existing vitamins, but I 'll have to check out how much--and maximize my doses.

Regarding follow-up for my post-op appointments with Dr. Fogelson, I do video calls with him. He just sends me a referral for needed imaging, in advance of my video appointment. My primary care doctor writes up the script. Once the imaging is completed, my healthcare group sends the images and summary electronically to Mayo Clinic/Dr. Fogelson. I can't guarantee it, but other providers may do the same.

I hope your new MRI reveals good news.🙏🙏Nadine

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Profile picture for martie67 @martie67

@nlback22
Thank you for all your input and information, everything you mentioned including stenosis I am there I have everything you named. For bow we concentrating on my cervical & nerve root to see how extensive it is. I shuld have more answers next week as all scans were completed yesterday. I will say it is scary as I am no longer 13 and have delt with everything all my life but it is now to a point of excruciating pain & feeling helpless.I am so happy your surgery worked and you are pain free for the most part.

Best wishes,
Martie

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@martie67
Hello Martie,
Sorry you're in so much pain.
I know it's difficult..just know that with the right steps and right surgeon your pain will lessen. You're about 10 years younger than I am and that is in your favor.
Let us know how things progress. With this group, you are not alone.
🙏🙏🙏
Nadine

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Profile picture for nlback22 @nlback22

@martie67
Hello Martie,
Sorry you're in so much pain.
I know it's difficult..just know that with the right steps and right surgeon your pain will lessen. You're about 10 years younger than I am and that is in your favor.
Let us know how things progress. With this group, you are not alone.
🙏🙏🙏
Nadine

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@nlback22
HI @nlback22 ,
I appreciate your support it really has helped with my mental state, lately i've been having a difficult time. But I know everything will be ok especially with you all. I will definately keep you updated.
Blessings
Martie

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Profile picture for martie67 @martie67

Anyone here have had Scoliosis herington fusion done? Mine was done 1981 . Many years later many issues. Just want to get advice on new stuff

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You are in our prayers🙏🙏🙏

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Profile picture for martie67 @martie67

@nlback22
HI @nlback22 ,
I appreciate your support it really has helped with my mental state, lately i've been having a difficult time. But I know everything will be ok especially with you all. I will definately keep you updated.
Blessings
Martie

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@martie67 You are my prayers too.

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