Scoliosis Surgey 1981

My Harrington rods were placed in 1991 when my previous surgery had failed. I was told to have them removed within two years. I was unable to find anyone who would do this surgery. In 2015 I had to have further surgery on my back and the Harrington rods were removed. It was replaced with further rods from T10 to L5. Unfortunately my dura was cut, which caused a spinal leak. Sadly, I am now left with Adhesive Arachnoiditis and Tarlov Cysts.

@sophie46
Than you for the reply it is nice to find people that understand. So I had S shape Scoliosis with a 48 degree angle I was 13 when I had my surgery, rods have always been in place. I was able to give birth to term with C-sections 1990 & 1994 ( even after being told might not be able to carry to term). But as I get older many comoplications. L 1-5 done for years, now they are saying C 5-6, cervical spine , degenrative disks , arthitis (of course) , & who knows what else, have an MRI scheduled this Thursday. Have no idea what are my options as of now. Just a little scary, which is why I'm happy I found this sight, to be able to speak to people that understand.

@martie67 Hi. I also had s-shape scoliosis and a Harrington rod surgery when I was 13 years old. I was fine for many years but about 5-7 years ago started to have slight then increasing tingling. After many years of trying different things and doctors to avoid surgery, I did decide to have surgery due to lower back pain and severe numbness making it hard to walk long distances. The XLIF surgery was done this past Sept. Unfortunately, post-surgery, I still have the lower back pain and numbness so I have another MRI this Fri.

@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.

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

@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

@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.

@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.

@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.