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Desperate for Help - 18mm Isthmic Spondylolisthesis L5/S1 - Pain

Started by Nikkik82 on 11/16/2018 4:47am

Hi everyone,

I would really love to hear about other people’s experiences that are similar to mine. So here is a little background.

I am a 36 year old female with a 18mm L5/S1 Isthmic Spondylolisthesis ( bi lateral pars defect) which was diagnosed 13 years ago. I have been seeing a chiropractor and Physio since I was diagnosed and I was managing ok. However after having my 2 children my symptoms have become more severe. I had some xrays done at the start of 2018 and the slip was 16mm and as of Monday it has increased to 18mm. I also now have severe degenerative disc disease at L5/S1 to the point it’s almost none on bone , I have stenosis and flattening of my L5 nerve root. I have basically ceased all physical activity and house duties due to it aggravating my pain to much. I have constant lower back ache, pain through my buttocks and hips, knees and abdomen. I get a lot of nerve pain in particular in my left side which is worse at night or if I have been on my feet longer than 10 mins. I can’t stand for long periods and I feel like my legs are constantly tired and weighted down. I do get some pins and needles in my big toe and bottom of my foot. I take Pain relief almost daily.

I also have constant bladder issues ( not sure if related ) have been seeing a urologist and has diagnosed overactive bladder ( no relief from Botox)

I have seen a neuro surgeon and he wants me to have a PLIF spinal fusion at L5/S1 and possibly L4 to make it more stable.

I am so nervous and I just don’t know if I am doing the right thing! I have heard HORROR stories about fusions.

My pain is not debilitating, however it certainly has a large impact on my quality of life. I don’t do the things I love and am very sedentary now.

What would your advise be? Would you do the surgery?

Thank you :)

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Dear Nikkik82,

I have grade 5 spondylolisthesis (completely slipped). I found out I had grade 4 when I was just 17 years old. They told me then that I needed surgery. I was too scared and still walked and was able to manage the pain, so I didn’t have the surgery until after I had my second child. When I was 28, I had my first child. The doctors knew of my condition, but didn’t know how to handle it, so it ended up breaking my spine when they took him out. (I had him C-section). I was unable to walk for a while after having him, but then after a while regained the ability to walk again. That was when my spondylolisthesis had progressed to grade 5. They wanted to do surgery then, but again, I was afraid I would never walk after the surgery, and was still walking currently. A few years later I became pregnant with my daughter. After having her, I was unable to do hardly anything without extreme pain, and I was losing more bladder control. They did more X-rays and said that if I did not do surgery I would eventually not only be paralyzed but also lose all bladder and bowel control. My spine was continuing to slip forward. So I did have the fusion surgery. I had an amazing doctor. The surgery I had did NOT stop the pain, and he told me it would not. It only prevented my spine from slipping forward any further. I am still in a great amount of pain each day, but I know that I won’t be paralyzed in the future.
I will tell you that the surgery is very painful, and a very long recovery, but to me is worth it knowing I can walk on my own two feet. I hope this is helpful.

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Hi Nikki,
Spinal Fusion is scary! But I believe it can be a really good thing! Here’s my story.... I’m 51 and have had back pain since my early 20s. The past 10 years it’s gotten really bad and I’ve been diagnosed with RetroListhesis (vertebra slipping backwards), Spondylisthesis, Degenerative Disc, Stenosis, a broken vertebra, two torn discs, two ruptured discs and a spinal cyst pressing on my cord. I had a L2-L3 spinal fusion with decompression and disc removal, and decompression of L5-S1 on April 3, 2018. Surgery went great and alleviated almost all of my problems once the inflammation and surgical healing took place - 8-10 weeks. I even went to Europe for two weeks 12weeks post op. When we did the surgery we knew that later on Id have to fuse the rest L2-S1 but we’re trying to maintain spinal mobility as much as possible. Hoping for 10 years or so, but it didn’t go so well. Once you fuse one level it puts pressure on the other segments that take on additional pressures from bending and flexing. I ruptured L4-L5 disc on vacation November of this year in an extremely painful event. Back to the surgeon and after MRIs my back showed it had broken down since the April surgery. It was very depressing. We all agreed to go back in, remove the original fusion and now fuse L2-S1 with anchoring screws into my posterior hip bone. Exactly 9 months to the day of my first fusion! I’m frustrated and I’m scared, but I’m going forward 5 days from now - January 3. Here’s why - I refuse to let this damage stop my life. I refuse to let the damage to my spinal cord continue until I can’t walk, control my bladder or bowel, or become a daily opioid user. So many people wait too long for fear of surgery - and their outcomes aren’t so positive. I expect a full recovery. I know the next 12 weeks will be tough, but nothing is worse than the sciatic pain, leg pain, groin numbness, neuropathy I’ve lived with.

So, to answer your question, yes I’d do the surgery. I’ve done one, it’s a tough recovery. The surgical pain though was WAY LESS than my daily pain pre-op. As I worked with PT, acupuncture, massage over the first 12 weeks I started feeling better than I had in years. Facing my second surgery I’m looking forward to getting back to that point!

Good Luck on your choice. Feel free to reach out if you need any support or have more questions.
Nat

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