1. < Brain & Nervous System

Lumbar stenosis and C spine stenosis

Posted by kat183990 @kat183990, Feb 5, 2021

Hi, I’m new so I’m going to give this a go. I have lumbar stenosis and recent decompression at L3,L4.I was at a large University hospital in Florida with a complex spine surgeon. I also have C spine stenosis and was told I needed fusion of c5-6 and 6-7. I have pain over shoulder blade but my biggest concern is severe weakness in my arms and legs. I was told To do lumbar spine first follow with C spine. I had 3 hours of L3L4 surgery and discharged the same day. I had no therapy ordered and no follow up up appointment until the day the doctor would sign the note to return to work. I did okay for 2 weeks, then developed an overwhelming fatigue, severe low B/P when standing. I was on 3 B/P meds at the time. I then became dehydrated. On week five I developed neurological issues. Balance walking, mental cognitive function , difficult using hands. Severe sleep problems. Not due to pain. The decompression did nothing for the pain I have while sitting but I was hopeful it would help the weakness. Every message to the physician who is two hours away was a very typical “it’s not related to surgery call your PCP” They give you this book that says call for any reason. I drive 2 hours to see the doctor and he has his hand on the doorknob. Start to mention the neck surgery as in I am not well enough to proceed and wanted to wait for summer. He quickly interjected “oh , I looked at your x-rays, their not that bad, you don’t need a c spine fusion” I mentioned the severe weakness in my arms and legs and he says the surgery is not meant to help that. I’m kind of at a loss because these were all the things we talked about at consultation. So now I’m no better from the surgery which I accept happens. I know he is an exceptional surgeon as he was the 4th I saw. My GI doctor at the same University hospital got me in to him because I was told neck surgery can cause problems with swallowing and I already have that problem. So, today I see my general Orthopaedic surgeon that did my knee replacements. I hoped he could direct me to a physical therapist and my PCP could right the order. He then told me he thought L3,L4 was not enough surgery. I should have had L3,L4, -L4, L5 decompression. He felt the severe weakness in my legs was coming from the problem in my C spine. I trust his opinion as he was the first to diagnose this over a year ago. So now I’m stuck. I don’t think another neurosurgeon in Tampa where I live will take me on because I had neurosurgery 6 weeks ago by a top complex spine surgeon in the state. I don’t think at this point I can survive another surgery. Nothing has changed. My pain that the neurosurgeon said he was treating was pain while sitting that feels like my pelvis is crushing the nerve into the chair. I don’t know where to turn at this point. My weakness is going to continue and my quality of life is no better. There’s a spine center on every corner here. After reading so many people got no relief, or for that fact they are worse leads me to believe this is just the way things will be. Any input is welcomed. Thank you.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

steeldove | @steeldove | Feb 5, 2021

@kat193990 Have you considered being seen at MaYO Clinic in Florida? If you submitted your history and explanation, I think you would get an appointment.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Feb 5, 2021

@kat183990 I am a Mayo spine surgery patient who had stenosis in the Central canal with spinal cord compression at C5/C6. I understand your frustration and having 2 separate areas of the spine that need attention sure does confuse things. I know this because of my experience where surgeons tried to tell me I had a lumbar problem causing issues with my walking and balance. 5 surgeons missed it, then I found medical literature with cases like mine that said it was a rare presentation of symptoms of cervical cord compression. I had pain all over my body that was generated by compression of my cervical spine. That was also missed by a head of a department at a major university spine center. I had to seek an opinion elsewhere because no one would help me address this with the surgeon who made a mistake by missing the correct diagnosis. He refused to do surgery for me because he thought my issues could be something like MS because he didn't believe the C spine can generate pain in the legs and body, but it can. I have a slightly bulging L3/L4 disc which may have been enough to barely contact the spinal cord while it was being compressed in my neck. It might be that combination that contributes to this because the cord is touched in 2 places at the same time. The signals for everything in your body go through the Cervical spinal cord and when you squish that bundle, it affects something, but not neccessarily exactly the same way every time because it is supposed to float and move when you change position, but if it is tethered, moving will change where it gets compressed. My first symptom was a pain in my ankle and I could turn that on and off by turning my head in the beginning. Later on, I could not turn off the pain, but the location changed with my neck position. Later if I bent my neck, I sent an electric shock down my entire body.

I think there is a strong possibility that your balance and limb weakness is being caused by cervical cord compression as mine was. I lost muscle to atrophy in my shoulders and arms and lost so much strength that driving a car was exhausting because I could not hold my arms up. When muscle spasms moved the alignment of the vertebrae, essentially making the canal smaller, I walked with an uneven gait or limp. My physical therapist would realign it, and I walked normally again. That was confirmation that the degree of compression could affect my gait. I also had difficulty emptying my bladder because of cord compression. Incontinence is a symptom of cervical cord compression, and this was an earlier stage of that issue.

This is called funicular pain when you get referred pain from your neck to your body and you need a surgeon who understands this. There is no diagnostic test to confirm it except when you decompress the spinal cord with surgery and the pain is cured. Cervical stenosis has many risks and leads to disability. I picked my Mayo surgeon because I read a paper he coauthored on cervical stenosis that talked about leg pain and funicular pain and I looked up that term and found the medical studies. If you can travel to Mayo in Rochester, he would be a good surgeon for you to consult and he is a super nice guy. I was so impressed by what he did for me, that when I could use my arms again, I painted his portrait.

As for the comments you received about the surgeon who looked at your X rays and said you don't need cervical spine surgery.... X-rays only show the bones well, but don't show the soft tissue, and the discs are just the spaces between the bones. They may give measurements of disc height, but you won't see a picture of where herniated discs are pushing their contents. Often the extruded disc material grows bone spurs with it. You need an MRI to show this in detail. A surgeon not authorizing physical therapy after surgery is a red flag to me and that is worth further discussion. It may be that you needed further healing first, but I'm surprised you were sent back to work without PT.

My surgeon, Dr. Jeremy Fogelson is a complex spine deformity expert neurosurgeon who also has ortho spine training, and he can do fusion and artificial disc replacement. If you have swallowing issues, the approach can be through the back of the neck and that would have a more painful recovery. My surgery was anterior and I did stretching and fascial release to prepare for surgery which made it easier because my muscles were more easily retracted during surgery, and my recovery was better too. I still have to stretch because the scar tissue tends to tighten up over time.

Don't give up because your doctor is running out the door. They do that when they don't understand and they don't want to get into a situation where their surgery fails to help the patient. I think that is kind of where you are now and they don't know what to do. They pay attention to their own success ratings and don't want to jeopardize that with a failed procedure, so it easier to walk away. Mayo does have a reputation for taking cases that no one else wants. I was one of those and I was refused surgical help by 5 surgeons for 2 years before I came to Mayo for a 6th opinion. That was worth it. I didn't give up, and I learned to advocate for myself even when I was afraid of the surgery. This surgery changed my life for the better and you might be a patient just like me. If you want to try to get an appointment at Mayo, you will need all your imaging so you can send it in. They will set up a patient account and you can ask that Dr. Fogelson review your case like I did. Even if you have to wait because of your ongoing recovery, you can still do this now and get in line. He is one of Mayo's best spine surgeons and when I broke my ankle badly this past summer I contacted him and asked for a recommendation for a surgeon to fix my ankle. He sent me to a surgeon with his personal recommendation that he would trust his family in his care. That means a lot to me, and put me at ease.

Let me know if I can answer more questions. Here are some links with the medical literature that changed my life and my patient story. FYI, there is also a Mayo campus in Jacksonville, Florida, but my surgeon is in Rochester.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
(There is also a video of me creating this painting which you can find in the Art for Healing discussion on page 24, but here is the link to that page.)
https://connect.mayoclinic.org/discussion/art-for-healing/?pg=24#chv4-comment-stream-header
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Funicular Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
This explains pelvis alignment issues that can mimic spine problems with sciatic pain. This is worth a read in case your pain could be caused by pelvic alignment issues. I have experienced this with overly tight hip flexors.
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
How to read cervical MRI
https://healthcareextreme.com/how-to-read-your-spine-mri-study/
This video (about an hour) explains a lot about cervical spine problems and treatments and shows and explains MRI images.
https://www.youtube.com/watch?v=xFPk4efcJ1g

REPLY
1 reply
Amanda Roe | @amandajro | Feb 5, 2021

Hello @kat183990 and welcome to Mayo Clinic Connect. I am so sorry to hear of your extremely difficult situation and can understand your growing frustration.

I am very glad to see that @jenniferhunter has quickly joined the discussion and shared her experience. She is well-versed, as you can see, in this topic and has a wealth of information to share.

Are you open to a fresh look at your case by a new surgeon?

REPLY
valb68 | @valb68 | Feb 7, 2021

Were your original doctor's initials T.F.?

REPLY
1 reply
valb68 | @valb68 | Feb 7, 2021
In reply to @valb68 "Were your original doctor's initials T.F.?" + (show)
@valb68

Were your original doctor's initials T.F.?

Jump to this post

And do you mind if I ask your age?

REPLY
bastet | @bastet | Mar 20, 2021

I think I have this too. Random deep-in-the-bone-pains in my arms and legs. My cervical MRI states “ C5-C6: Mild left paracentral disc bulge slightly flattens the left ventral thecal sac contour without frank stenosis. No significant neural foraminal narrowing.” Its subtle but there is compression. EMG & NCS tests were mostly normal. How do I effectively raise this possibly with my neurologist without her just waving me off? I have an appointment on Thursday. Last time I met with her she referred me for physical therapy focused on my thighs and cognitive behavioral therapy. WTH?

REPLY
ch665296f | @ch665296f | Jan 22, 2023

I am having considerable tingling and numbness in my feet and ankles with a little in the groin area. It never goes away. I have some pain and stiffness in my lower back. A little over a year ago I had RL4-5, L5-S1 Laminotomy & Foraminotomy. They also removed some arthritis. Could these new symptoms be an extension of that procedure.? I have read a little about Cauda Aquina syndrome. Is that a possibility?

REPLY
drrob1 | @drrob1 | Aug 2 6:06pm
In reply to @jenniferhunter "@kat183990 I am a Mayo spine surgery patient who had stenosis in the Central canal with..." + (show)
@jenniferhunter

@kat183990 I am a Mayo spine surgery patient who had stenosis in the Central canal with spinal cord compression at C5/C6. I understand your frustration and having 2 separate areas of the spine that need attention sure does confuse things. I know this because of my experience where surgeons tried to tell me I had a lumbar problem causing issues with my walking and balance. 5 surgeons missed it, then I found medical literature with cases like mine that said it was a rare presentation of symptoms of cervical cord compression. I had pain all over my body that was generated by compression of my cervical spine. That was also missed by a head of a department at a major university spine center. I had to seek an opinion elsewhere because no one would help me address this with the surgeon who made a mistake by missing the correct diagnosis. He refused to do surgery for me because he thought my issues could be something like MS because he didn't believe the C spine can generate pain in the legs and body, but it can. I have a slightly bulging L3/L4 disc which may have been enough to barely contact the spinal cord while it was being compressed in my neck. It might be that combination that contributes to this because the cord is touched in 2 places at the same time. The signals for everything in your body go through the Cervical spinal cord and when you squish that bundle, it affects something, but not neccessarily exactly the same way every time because it is supposed to float and move when you change position, but if it is tethered, moving will change where it gets compressed. My first symptom was a pain in my ankle and I could turn that on and off by turning my head in the beginning. Later on, I could not turn off the pain, but the location changed with my neck position. Later if I bent my neck, I sent an electric shock down my entire body.

I think there is a strong possibility that your balance and limb weakness is being caused by cervical cord compression as mine was. I lost muscle to atrophy in my shoulders and arms and lost so much strength that driving a car was exhausting because I could not hold my arms up. When muscle spasms moved the alignment of the vertebrae, essentially making the canal smaller, I walked with an uneven gait or limp. My physical therapist would realign it, and I walked normally again. That was confirmation that the degree of compression could affect my gait. I also had difficulty emptying my bladder because of cord compression. Incontinence is a symptom of cervical cord compression, and this was an earlier stage of that issue.

This is called funicular pain when you get referred pain from your neck to your body and you need a surgeon who understands this. There is no diagnostic test to confirm it except when you decompress the spinal cord with surgery and the pain is cured. Cervical stenosis has many risks and leads to disability. I picked my Mayo surgeon because I read a paper he coauthored on cervical stenosis that talked about leg pain and funicular pain and I looked up that term and found the medical studies. If you can travel to Mayo in Rochester, he would be a good surgeon for you to consult and he is a super nice guy. I was so impressed by what he did for me, that when I could use my arms again, I painted his portrait.

As for the comments you received about the surgeon who looked at your X rays and said you don't need cervical spine surgery.... X-rays only show the bones well, but don't show the soft tissue, and the discs are just the spaces between the bones. They may give measurements of disc height, but you won't see a picture of where herniated discs are pushing their contents. Often the extruded disc material grows bone spurs with it. You need an MRI to show this in detail. A surgeon not authorizing physical therapy after surgery is a red flag to me and that is worth further discussion. It may be that you needed further healing first, but I'm surprised you were sent back to work without PT.

My surgeon, Dr. Jeremy Fogelson is a complex spine deformity expert neurosurgeon who also has ortho spine training, and he can do fusion and artificial disc replacement. If you have swallowing issues, the approach can be through the back of the neck and that would have a more painful recovery. My surgery was anterior and I did stretching and fascial release to prepare for surgery which made it easier because my muscles were more easily retracted during surgery, and my recovery was better too. I still have to stretch because the scar tissue tends to tighten up over time.

Don't give up because your doctor is running out the door. They do that when they don't understand and they don't want to get into a situation where their surgery fails to help the patient. I think that is kind of where you are now and they don't know what to do. They pay attention to their own success ratings and don't want to jeopardize that with a failed procedure, so it easier to walk away. Mayo does have a reputation for taking cases that no one else wants. I was one of those and I was refused surgical help by 5 surgeons for 2 years before I came to Mayo for a 6th opinion. That was worth it. I didn't give up, and I learned to advocate for myself even when I was afraid of the surgery. This surgery changed my life for the better and you might be a patient just like me. If you want to try to get an appointment at Mayo, you will need all your imaging so you can send it in. They will set up a patient account and you can ask that Dr. Fogelson review your case like I did. Even if you have to wait because of your ongoing recovery, you can still do this now and get in line. He is one of Mayo's best spine surgeons and when I broke my ankle badly this past summer I contacted him and asked for a recommendation for a surgeon to fix my ankle. He sent me to a surgeon with his personal recommendation that he would trust his family in his care. That means a lot to me, and put me at ease.

Let me know if I can answer more questions. Here are some links with the medical literature that changed my life and my patient story. FYI, there is also a Mayo campus in Jacksonville, Florida, but my surgeon is in Rochester.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
(There is also a video of me creating this painting which you can find in the Art for Healing discussion on page 24, but here is the link to that page.)
https://connect.mayoclinic.org/discussion/art-for-healing/?pg=24#chv4-comment-stream-header
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Funicular Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
This explains pelvis alignment issues that can mimic spine problems with sciatic pain. This is worth a read in case your pain could be caused by pelvic alignment issues. I have experienced this with overly tight hip flexors.
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
How to read cervical MRI
https://healthcareextreme.com/how-to-read-your-spine-mri-study/
This video (about an hour) explains a lot about cervical spine problems and treatments and shows and explains MRI images.
https://www.youtube.com/watch?v=xFPk4efcJ1g

Jump to this post

Your comments are very helpful to me. I just joined Mayo Clinic connect because I am suffering from postop pain after extensive fusion of my lower spine and pelvis for spinal stenosis DISH. Two years earlier at cervical fusion for a different areas of spinal Stenosis. Is there a discussion or a group focused on helping postop patients with their issues of wound pain, postop pain, neuropathy, pain at the mental and physical health thereof. By the way, I had both my surgeries at the Mayo Clinic in Rochester and was very pleased with my care Now back in the rural community, where they are totally overwhelmed by such a complex case. I would love to find or start a discussion group with similar patients. Please advise. Thank you.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 3 5:15pm
In reply to @drrob1 "Your comments are very helpful to me. I just joined Mayo Clinic connect because I am..." + (show)
@drrob1

Your comments are very helpful to me. I just joined Mayo Clinic connect because I am suffering from postop pain after extensive fusion of my lower spine and pelvis for spinal stenosis DISH. Two years earlier at cervical fusion for a different areas of spinal Stenosis. Is there a discussion or a group focused on helping postop patients with their issues of wound pain, postop pain, neuropathy, pain at the mental and physical health thereof. By the way, I had both my surgeries at the Mayo Clinic in Rochester and was very pleased with my care Now back in the rural community, where they are totally overwhelmed by such a complex case. I would love to find or start a discussion group with similar patients. Please advise. Thank you.

Jump to this post

@drrob1 Welcome to Connect! I agree and thank you for your kind words. Mayo is a great place if you need spine surgery. I was impressed with the quality of my care and the great results I had after all surgeries I've had there (spine and ankle). We have a lot of patients talking about these issues in many different discussions. Here are a few that I found that may be of interest to you.

Spine Health - "Advice for spouse of Spinal Fusion surgery pre-op and post-op"
https://connect.mayoclinic.org/discussion/advice-for-spouse-of-spinal-fusion-surgery-pre-op-and-post-op/
Spine Health - "Anyone who has had Cervical spinal compression surgery"
https://connect.mayoclinic.org/discussion/anyone-who-has-had-cervical-spinal-compression-surgery/
Spine Health - "DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's"
https://connect.mayoclinic.org/discussion/dish-disese-diffuse-ideopathic-skeletal-hypertrophy-or-foresters/
Spine Health - "Does anyone have DISH and/or OPLL?"
https://connect.mayoclinic.org/discussion/does-anyone-have-dish-and-or-opll/
If you just click the link to the Spine group (at top left), you'll get a list of the current active discussions and you can look through those. Also, you can search by typing a term in the search bar at the top, and find discussions about that topic. I just selected these links for you by scrolling through the current discussions, and since your diagnosis is also about DISH, I included a couple of those. It's easy to connect with other members in an active discussion and ask questions.

How long has it been since your surgery? I do know that lumbar surgeries take a lot more time in recovery and are more painful because you are bearing your body weight there and that is hard when it causes pain. My surgery was cervical, so that was a much easier recovery, but it really took about 3 months until I stopped noticing that I was recovering from surgery. There certainly is a mental and emotional part to healing, and mine was being able to recovery my ability to paint because I am an artist. I had lost coordination in my arms because of spinal cord compression. I had to prove to myself that I could paint again. Can you guess what I did? I set the bar pretty high for my first post op painting.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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