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Alex C 08-05-2014 11:09 AM

Spinal stenosis with ddd, sacral pain, and burning feet
Hello everyone!! This is my first post so please forgive me if it's rather tedious. It all started when I would just have lower back pain since I can remember (stand on my feet thought nothing of it). In late may I went to the hospital with a kidney infection (no signs at all!!), got treated after 4 days in the hospital and was told to go to my PCP 2 weeks later for a follow up. I went to my PCP, I told her what was wrong and she said I shouldn't have back pain. She ordered X-rays; I have chronic wedge deformities at my T11/T12, which weren't too major to me. However, I was still in pain so she ordered an MRI; that's when they found the stenosis (congenital) in my lumbar spine (L1-L5 moderate to severe forminal stenosis); while imaging my back, they also found gallstones so I had my gallbladder removed July 3rd. They also found retrolisthesis of my L5-S1. I was sent to an orthopedist, who prescribed me a 10 day dose of Gabapentin (300mg 3x a day) until I could see a neurologist. That took a few weeks as the good ones are always booked, or so I thought. The first neurologist I went to didn't tell anything new or what was happening with my back and he just talked about the stenosis saying "it's not that bad." Other than that, I got a 90 day 5x refillable bottle of gabapentin, which in all honesty, is dulling down and is not as strong anymore. I made another appointment for this Friday the 8th and we will see where it goes because she's worth my month and a half wait! Let me tell you about my symptoms. About a month ago I started to have neck pain along with swelling while sitting down. Sometimes it goes down, sometimes it doesn't and it's painful. Obviously there's the stenosis but the retro is most definitely compressing those nerves in my back. I have had bad sacral pain as stated above which could be the result of retro and a herniated disc in that region. I had a sharp pain from the back of my head to my calves one day when I was out with friends (sitting down!) and it's pretty scary. I also have heaviness in my legs as if I walked or ran a long distance when I walk around for a few minutes. There is some arm/hand pain (along with tremors when holding something) as well sometimes with skin sensitivity there, thighs, back and on the tops of my feet. Unfortunately, I do have some difference in feeling on the top of my left foot. I have heard this could be a neuropathic problem and that does make sense. I was wondering if any of you had success with physical therapy, ESI, etc? I really appreciate everything in advance because this really helps knowing other people have gone through the same things and maybe have had different outcomes.

Alex C.

teteri66 08-05-2014 07:44 PM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Welcome to the board. Let me ask you a couple more questions to get a better idea of what may be going on.

Do you have pain when standing or walking? Do you get any relief when you lean slightly forward as when pushing a shopping cart?

Have you had a cervical MRI?

Are you going to see a spine specialist...a fellowship-trained orthopedic spine surgeon or a neurosurgeon whose practice is devoted to the neck and back?

How bad is the retrolistless? Do you know what Grade it is?

Alex C 08-05-2014 08:28 PM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Thank you for welcoming me. As for my pain, I do have it when I'm standing and walking around. It's hard for me to stand for 10 minutes to do dishes; took a medical leave from work in early June (before symptoms worsened) because I can't sit down at all. When I do shop, I do lean over and it doesn't seem to relieve much; my back pain may slightly lessen but then the pains in my saddle/sacral region start and I have to walk slowly.

No, I have not had a cervical MRI but since my neck started swelling, I've been meaning to ask my second neurologist, whom I see this week for the first time.

Yes, she is a certified neurosurgeon and apparently she's worth the wait; when I tried to schedule an appointment in June, she was booked until August, so we will see where that goes.

As for the retro, I have no idea what grade it is. My first neurologist explained nothing to me or said a word to me when I told him my legs hurt. It feels horrible because sometimes I have pain (burning, tingling, leg heaviness, sensitivity) in my arms, hands, and lower back to my feet and he said nothing to me. Wasn't much help.

Thank you.

teteri66 08-06-2014 07:20 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Just to clarify...a neurologist diagnoses and treats diseases of the nervous system. While this specialty is useful in helping the spine specialist determine whether there is nerve damage, this is not the best specialist to go to for an accurate diagnosis and plan of treatment for a spinal problem.

Generally speaking, when there is a lumbar issue, the symptoms will be felt from that level of the spine on down...which generally transfers to from the lower waist on down. Cervical issues usually affect the upper body and arms, and thoracic affects the area that wraps around the rib cage. The exception to these generalities is when there is cord compression. Then a cervical issue can cause pain, numbness, etc. anywhere...but always below the level of compression.

While many of your symptoms can be explained by the lumbar stenosis, it would not explain why you are feeling numbness in shoulder, arm or hand....

teteri66 08-06-2014 07:53 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Sorry, I got interrupted!

Having also suffered from lumbar spinal stenosis and spondylolisthesis, it is very annoying to hear a doctor tell you it's not that bad...with the implied "you shouldn't be in pain."

There is some discrepancy between the radiology report and the neurologist's assessment because if there is severe stenosis, it becomes very painful to stand, to sit, to walk.

I haven't heard of giving a ten day dosage of gabapentin, as it is not a quick-acting drug. It usually takes a week to have an effect, and it is the type of drug that one has to taper off of if it is taken for a period of time.

In any case, as I mentioned earlier, you would be smart to see an orthopedic spine surgeon or a spine surgeon who only see patients with neck and back problems.

The retrolisthesis may or may not be causing symptoms. It may be something you have had for a long time and it may now be stable, in which case, it is probably not causing symptoms. But if there is instability, it can cause nerve pain...often if there is pain in both legs or if it shifts from one leg to the other, it is a result of the spondylolisthesis.

The burning in your feet is probably coming from the compression of one of the lower lumbar spinal nerves, L4, L5 or S1, or all of them! It could be a peripheral neuropathy if we didn't already know you have DDD and the retrolisthesis. Chances are, it is a result of the spinal nerve compression. Even though the nerve is pinched off in the lumbar spine area, one can have pain at any point along the path of the nerve.

You may have some success with conservative treatments such as you mentioned. It all depends on the extent of the stenosis and how much nerve compression there is. If the stenosis is severe, the only way to make more space for the nerves is through a surgical decompression. Unfortunately, DDD and stenosis are not issues that will get better as time goes by. Most people continue to experience an increase in symptoms until eventually, surgery becomes necessary.

Hope your next appointment provides more information and a plan of treatment. If not, keep searching for a spine doctor that can help you. If surgery is suggested, be sure to get several opinions, from both an ortho spine surgeon and a neurosurgeon...or several of each!

Alex C 08-06-2014 07:54 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
I'm seeing her because of the back pain and such but there might be an issue with my nervous system as well. I overheat even when it's cold out plus many other things; pretty positive I have a form peripheral neuropathy.

Thank you for clarifying, I appreciate it. I do however, have the name of a spine specialist if she tells me something I already know, which I hope is not the case. I will definitely inquire about the grade of my retro, how bad it's pinching my sacral nerves and what not. As for my neck issues, I really hope I don't have an issue because I couldn't deal with both. The shoulder-hand pain is irritating at times but then gets better if I move a certain way. I don't know if I mentioned earlier but lately I've been dropping things, once or twice after picking them up.

I just want my appointment to come an figure out a treatment plan because I'm definitely dealing with a little muscle wasting and I don't need that. I would work out if I could but they told me to not do certain things.

Alex C 08-06-2014 07:56 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
I forgot to mention I've been having slight urinary retention for about the past month but couldn't do much about it because every specialist (including a urologist) was booked until at least September. I've heard this could be a part of a herniated disc at the L4-S1 region and this is definitely not a UTI; I've been checked every time I go to the dr as I had that kidney infection in may. I do know that if I ever urinate myself to go to the hospital right away because it could be cauda equina and that calls for decomp within 24-48 hours but I hope that doesn't happen. It's just a little strange. Sometimes urine comes right out, other times I have to sit and wait, and sometimes it just dribbles out. Like I stated above, no infection. Any ideas?

teteri66 08-06-2014 07:59 PM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
I am glad you know the symptoms of cauda equina syndrome. Whenever someone has issues at the lower lumbar area, there is always the possibility that the nerves that innervate the bladder and bowel are being compressed. Be sure to mention this when you see the spine surgeon.

teteri66 08-06-2014 08:05 PM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Dropping things can be a sign of a cervical issue that is causing myelopathy.

Alex C 08-07-2014 03:57 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
I will mention it for sure because I don't want damage to occur to my bladder/bowels or have nerve damage. As for the cervical issues, that's what I thought. When I first started having back pain, I had neck pain and they told me it was nothing. I already have tremors but since I've gotten the neck pain, they have gotten worse when I do certain things; even though I am on gabapentin and it supposedly helps with that. For the past month, while waiting for appointments and such, I've been wanting to ask for a full body MRI or at least from my neck to my lower back because I am in pain. It makes no sense; if my lower back has issues why would my neck be hurting and why would I be dropping things you know?

Alex C 08-09-2014 09:24 AM

Re: Spinal stenosis with ddd, sacral pain, and burning feet
Update: I saw my neuro yesterday and she performed every test my other one didn't. She took all of my issues into account and decided that she is ordering a cervical MRI and also a brain MRI. Hopefully my insurance puts it through quickly. I'm also scheduled for EMG testing this coming Monday, so I'm sure that will help explain the weakness in my arms and legs. As for my urinary retention issues, she gave me the names of two urologists, and I'll be scheduling with them on Monday.

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