Spondylolisthesis and DDD

Posted by red3 @red3, Nov 5, 2019

I am a 52 year old female with no prior surgeries. I have suffered lumbar pack pain for 30 years. It started out hurting from time to time. Now I have constant pain and have trouble getting out of bed in the morning and can barely get the dog walked. Doctors have told me I need spinal fusion of L5-S1 and possible L4. Also, disc replacement of L5. I have seen an Orthopedic surgeon and a Neurosurgeon for opinions. The neurosurgeon wants to do the surgery. The orthopedic surgeon said his goal is to keep me off the operating table because I am opening myself up to a whole host of problems if I have the surgery. I decided to see another spine doctor. They currently have me on Gabapentin, 2 capsules a night which has made zero difference in my pain. They want me to work up to 3 capsules a night but I'm not happy about taking it. It makes me dizzy and has other negative side effects. My question is: Should I have the surgery? Or do I need to accept my condition and learn to live with a decreased quality of life?

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@red3

@jenniferhunter, Jennifer, I started walks outside right away because that is what my surgeon told me to do. And also, I would have went crazy just staying inside. You can do that in the southwest because of the lack of moisture and ice. I'm not really up for stretching yet, I'm in too much pain. I was being overly optimistic when I wrote that. Another negative is that I have a lot of nerve pain in my legs at night. I hope that diminishes with the passage of time. Otherwise, I feel I am doing fairly well. It's fun to be able to read novels as much as I want and not feel guilty. 🙂

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When I had my L4, L5, S1 fusion in Oklahoma City it was winter, I had to use a cane for 4 weeks after surgery, but we went to a mall where we could go to a movie … certainly helps get ones mind off of self… I went to the beach in Santa Monica New Year's.. When you can drive … Santa Fe would be my great diversion.. Basque Del Apache Wildlife Refuge south on the Rio Grande from you is a favorite of mine as well…

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That sounds nice Ken…I love Santa Fe and wonder every time I go there why don't I go there more often?? I am also a nature lover and have lived in Albuquerque for 20 years and have never been to Bosque Del Apache. I guess I've just been raising kids for the last 17 years. I also don't mind hanging out at home. We've got the Sandia Mountain foothills 5 min. walk from our door so that's where I get my nature fix. 🙂

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@JustinMcClanahan

Hi @spondi64, and welcome to Connect. You may notice I combined your discussion with an existing discussion titled, "Spondylolisthesis and DDD." I did this so you could both read through the many messages posted on this subject and so the members already discussing this topic would have a chance to see your message and respond as well.

@spondi64, if you are comfortable, would you share with the other members of this discussion a bit more about your diagnosis and how you are doing with it and how you are currently managing it?

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I'm a 64 y/o female with degerative spondylolisthesis grade 1 of L4 on L5. Also DDD most noticeable at L4-L5 & L5-S1. Multi disc space narrowing with endplate sclerosis most noticeable at T12-L1, L1-L2, L4-L5,& L5-S1. Associated facet arthropathy most noticeable at L4-L5 & L5-S1. Vascular ossifications are present. Spurring of the bilateral S1 joints.
Bascially DDD & Spondylolisthesis stage1 of L4 -L5.
Found all of this out after having an MRI last March 2019 after slipping in my kitchen & ended up at the ER. I was given a Medrol 4mg pack & Hydrocodone.
I followed up with my Dr who sent me to PT. I went once, they sent me home with my sheet of exercises to do. My next appointment, my husband parked in the wrong place so I had to walk to the other side of the hospital in excruciating pain. They rolled their eyes at me & told me to leave because I was late.
So my treatment has gone like this: Epidural on 5-23-19. It kept me mostly pain free for about six weeks. Pain came back, my Dr prescribed 12 Tramadol 50mg. After that it was back to Ibuprofen. Second Epidural on 7-18-19. Mostly pain free for about eight weeks. Prescribed 12 Tramadol, then back to Ibuprofen. Third Epidural, 10-22-2019. Pain came back, 12 Tramadol prescribed on 12-07-19. Then pain came back & was excruciating. My husband was finally able to get a refill of 12 more Tramadol on 12-31-19.
I met with my Dr on 1-3-20, we agreed it's time to do something else. Instead of a specialist, I chose giving PT another try. I was prescribed Gabapentin 300mg cap. Took the first one at bedtime, fell asleep on the couch, woke up at 3:30 a.m in such horrible pain that it took me 30 minutes to get to my bed.
Monday morning I will be calling my Dr to be referred to a specialist. I need a new start with all of this, & I need support. I want things done correctly this time.

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@JustinMcClanahan

Hi @spondi64, and welcome to Connect. You may notice I combined your discussion with an existing discussion titled, "Spondylolisthesis and DDD." I did this so you could both read through the many messages posted on this subject and so the members already discussing this topic would have a chance to see your message and respond as well.

@spondi64, if you are comfortable, would you share with the other members of this discussion a bit more about your diagnosis and how you are doing with it and how you are currently managing it?

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Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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Ok. I know quite a bit about gabapentin bc of my husband's nerve pain. He takes 900 mg a day. I'm not going to lie and bc of the new laws about narcotics gabapentin is probably the next best thing some people but not most. Gabapentin is like Lyrica with all the side effects. a cause my husband to have restless leg syndrome plus he felt like lightning was going down his back and legs. Especially if he took a couple more than his normal dose. I also have gabapentin for my arthritis in my fibromyalgia and endometriosis. It did almost the same exact thing to me plus it's made me feel like I had something sitting on my chest at night. And it caused us both to have nightmares. I remember correctly that during the day it actually felt like you've been drinking but you haven't kind of like a easy fogginess in your head.trazodone has probably been one of the best sleeping medications to help your legs rest. If you have any more questions please message me back. 

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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Also I forgot about mentioning the leg spasms not only at night in bed but during the day. 

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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Also try pure peppermint oil on your back. It's better than biofreeze it gets deep into the bone and muscle especially if you have heating pads out of all over your house like we do.

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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What area do you live in or what state or city

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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Did you have an injury? Or just all of a sudden started

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@spondi64

Hi,I did respond but my response ened up someplace else, on page one of these posts I think. Right now I don't have a Dr. that will listen to me. I have stage 1 L4 on L5 degenerative spondylolisthesis, with some other issues. My Dr. prescribed Gabapentin 300mg last Friday, January 3. I took it at bedtime & woke up at 3:30 a.m. in the worst pain I have had since this all started in March 2019. It is still affecting me.

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@spondi64 Hi – I'm sorry you are going through so much pain – I'm right there with you.

It is unacceptable to have a doctor who doesn't listen to you. I learned the hard way to find doctors on my own, through research and simply asking around. Do you live near a big city or teaching hospital? Often that's where the best are. Are you being seen by a pain doctor/anesthesiologist? That's what has helped me, though I'm annoyed about the wait between treatments for my back: in my case nerve ablations.

I have lived with back pain for over 10 years, finding relief sometimes, but really suffering/not-functioning during other times. It was only when I sought out my own care providers and insisted on a treatment plan that things improved. Our medical system is so broken, I think this is the only way we can get the help we need. We shouldn't have to, but it's the way things are now.

I hope you begin to feel better soon.

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@babette

@spondi64 Hi – I'm sorry you are going through so much pain – I'm right there with you.

It is unacceptable to have a doctor who doesn't listen to you. I learned the hard way to find doctors on my own, through research and simply asking around. Do you live near a big city or teaching hospital? Often that's where the best are. Are you being seen by a pain doctor/anesthesiologist? That's what has helped me, though I'm annoyed about the wait between treatments for my back: in my case nerve ablations.

I have lived with back pain for over 10 years, finding relief sometimes, but really suffering/not-functioning during other times. It was only when I sought out my own care providers and insisted on a treatment plan that things improved. Our medical system is so broken, I think this is the only way we can get the help we need. We shouldn't have to, but it's the way things are now.

I hope you begin to feel better soon.

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@babette Hi, I didn't see this, the reason I didn't reply. I'm having trouble finding my way around here.
After the ordeal with the horrible pain from the Gabapentin my husband called my Dr's office and explained the situation. When I got a call back from a nurse she told me I was to continue taking it anyway. I felt talked down to like I was just an annoyance to their day. I was so stunned that I didn't stick up for myself and tell her no way, especially after reading about that med.
Unfortunately I live in a very small town in northwest Iowa and have no idea where to begin to find specialized help. I haven't been seen by a pain Dr. Just my Dr, who has sent me for three epidurals, then when the pain returned, prescribed 12 Tramadol. Otherwise I'm on my own with only Ibuprofen. My story is so long.
All I really want is a referral to a pain Dr. No more meds that I can't tolerate, no more epidurals etc. I just want to start over from today to try and find someone who will listen. I feel really stupid for telling my Dr last Friday, the 3rd, that I'd like to try PT again. That's when everything backfired. My husband has been doing most of the talking for me because I've become too depressed and am not able to express myself and what I want at this point. Sounds like it's time for me to begin seeking the help I really need on my own. That is the best advice I've been given! I hope we can keep in touch. Thank you so much!
One thing I have started making myself do is walk. It helps unless I'm in too much pain to get moving. And I have learned some PT exercises that I do that I know are safe from two PT's on You Tube, one of whom has Spondy. I think their YouTube is Bob and Brad. They're also on Facebook I think.
Sorry this got so long. I'm just so greatful I found your post.

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@veteranspouseinpain

Ok. I know quite a bit about gabapentin bc of my husband's nerve pain. He takes 900 mg a day. I'm not going to lie and bc of the new laws about narcotics gabapentin is probably the next best thing some people but not most. Gabapentin is like Lyrica with all the side effects. a cause my husband to have restless leg syndrome plus he felt like lightning was going down his back and legs. Especially if he took a couple more than his normal dose. I also have gabapentin for my arthritis in my fibromyalgia and endometriosis. It did almost the same exact thing to me plus it's made me feel like I had something sitting on my chest at night. And it caused us both to have nightmares. I remember correctly that during the day it actually felt like you've been drinking but you haven't kind of like a easy fogginess in your head.trazodone has probably been one of the best sleeping medications to help your legs rest. If you have any more questions please message me back. 

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Hi, sorry for the slow response. I'm still trying to figure out my way around here. I've decided absolutely no more Gabapentin, that one dose was an absolute nightmare.
I had opted to try PT one more time, but have changed my mind.
I'm starting over with this, going to seek out a referral to a pain specialist and take it from there. Especially after I was told to keep taking the gabapentin anyway.
Thank you for your response. I appreciate it so much.

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