Severe spinal stenosis

Posted by collierga @collierga, Jan 15, 2020

Hi there
I am new to this group. I am a 64 yr old female, in basically good health. Hip replacement 10/2018 with no complications.. Currently have no pain only bilateral finger numbness with minor lower left arm numbness. For the most part does not interfere with my daily living activities
Diagnosed with severe cervical stenosis via MRI in 8/2019,C-3-4 shows severe disc degeneration, moderate to severe bilateral formalin narrowing due to uncinate spurs/C4-5 same as 3-4 but with broad based disc bulge/5-7 C7-T-1 Degenerative anterolisthesisBroad based disc/osteophytic ridge causing severe central canal narrowing. i have gone to 2 different Neuro surgeons they both say complete opposite treatment plans. One says observe see him if symptoms get worse. The other doctor wants to do 2 surgeries, first through the front, #2 through the back to stabilize. I am leaning towards no surgery but am looking for someone to tell me they had this surgery and are happy t hey had it done. So far when i talk to people with back/neck issues they say they would never again go through surgery.
Thank you all in advance for you opinions..

@lotsofpain

As well as my hip problems which will mean a replacement of my hip on the left side I had my right side replaced a year ago my consultant says some of my problems are to do do with spinal stenosis which causes pain tingling and forces me to bend forward has anyone else experienced this and what if anything can be done about it

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@lotsofpain I presume you are talking about stenosis in the central spinal canal. Commonly when discs rupture, the jelly like material inside invades a space it doesn't belong, and that causes inflammation. It creates uneven pressure on the end plates of the vertebral body, and that causes bone remodeling and growth of bone spurs. For me, that created a disc osteophyte complex of disc material and bone spurs that was pressing into my spinal cord. Sometimes stenosis happens in the spaces between the vertebrae where the nerve roots exit the spinal cord. It then compromises that nerve specifically. Sometimes surgeons can do a foraminotomy to address issues at the nerve roots. This link explains a foraminotomy.
https://www.spineuniverse.com/treatments/surgery/foraminotomy-taking-pressure-spinal-nerves
If the problem is in the central spinal canal, surgery to get there needs to go through a disc space after a bad disc is removed, or discectomy. That is what I had, a removal of the C5/C6 disc, a clean out of the bone spurs and a fusion with a bone graft to replace the disc. These problems tend to keep getting worse and the spinal cord is easily damaged which can cause permanent disability, so it is important to get a surgical intervention before that happens. Spinal stenosis is measured on the x-rays and classified according to how much the fluid space within the spinal canal has narrowed. On an MRI, spinal cord damage can show up as a whitish area within the spinal cord where the individual nerve fibers have degenerated (myelopathy). Sometimes this damage can be mild and not show changes on the MRI in the initial stages.

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@lotsofpain

Lumbar stenosis can make it difficult to walk and often feels better when you lean forward and relieve the pressure on your lower vertebrae.. This describes me to a T, I am severely bent forward . I had an injection which if anything mad things worse.I need something that will physically pull me upright like a belt or brace in the hope ir will force my muscles to learn to support a more upright posture. ANY IDEAS Complicated by the fact that I am waiting for a 2nd hip replacement as my hip has no movement my other hip was replaced 16 months ago

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I am in your shoes! Do you know the position you're in when putting clothes in a top-load washing machine? Or standing at the sink washing dishes? I cannot stand like that at all, I have to lean forward on my forearms. If I don't, I have to sit on a stool, and am then also on my forearms. I too had a right hip replacement 2 years ago and it's well, but put an additional "quirk" in my stance. To look at me you would thing I'm about to fall on my face. I have found that it does get me to the front of waiting lines tho! Have had many injections, none worked. As far as standing straight, I don't know of any device that will do that. I'm afraid they'll tell you to strengthen muscles in PT.

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Lumbar stenosis can make it difficult to walk and often feels better when you lean forward and relieve the pressure on your lower vertebrae.. This describes me to a T, I am severely bent forward . I had an injection which if anything mad things worse.I need something that will physically pull me upright like a belt or brace in the hope ir will force my muscles to learn to support a more upright posture. ANY IDEAS Complicated by the fact that I am waiting for a 2nd hip replacement as my hip has no movement my other hip was replaced 16 months ago

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@lifetimepain

I am in your shoes! Do you know the position you're in when putting clothes in a top-load washing machine? Or standing at the sink washing dishes? I cannot stand like that at all, I have to lean forward on my forearms. If I don't, I have to sit on a stool, and am then also on my forearms. I too had a right hip replacement 2 years ago and it's well, but put an additional "quirk" in my stance. To look at me you would thing I'm about to fall on my face. I have found that it does get me to the front of waiting lines tho! Have had many injections, none worked. As far as standing straight, I don't know of any device that will do that. I'm afraid they'll tell you to strengthen muscles in PT.

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Camtocormia Calibrace though I don't know whether the disease or the brace really exist

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Hello @lotsofpain . I see you are looking to learn from other members with spinal stenosis if there are options for you to consider to help support a more upright posture.

You will notice that I moved your post to an existing discussion on Severe Spinal Stenosis so you can more easily connect with other members with experience like @lifetimepain @collierga @jenniferhunter and @lilypaws .

Here is a resources that may be helpful as well.

– When to Consider a Back Brace:
https://www.spine-health.com/treatment/alternative-care/when-consider-back-brace
One thing to note is that it is recommended to consult with your doctor before using a brace. Have you had that conversation yet?

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@amandajro

Hello @lotsofpain . I see you are looking to learn from other members with spinal stenosis if there are options for you to consider to help support a more upright posture.

You will notice that I moved your post to an existing discussion on Severe Spinal Stenosis so you can more easily connect with other members with experience like @lifetimepain @collierga @jenniferhunter and @lilypaws .

Here is a resources that may be helpful as well.

– When to Consider a Back Brace:
https://www.spine-health.com/treatment/alternative-care/when-consider-back-brace
One thing to note is that it is recommended to consult with your doctor before using a brace. Have you had that conversation yet?

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I will be chatting to a physiotherapist online tomorrow morning I find that is more effective but this sort of thing that my GP

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@lotsofpain

Lumbar stenosis can make it difficult to walk and often feels better when you lean forward and relieve the pressure on your lower vertebrae.. This describes me to a T, I am severely bent forward . I had an injection which if anything mad things worse.I need something that will physically pull me upright like a belt or brace in the hope ir will force my muscles to learn to support a more upright posture. ANY IDEAS Complicated by the fact that I am waiting for a 2nd hip replacement as my hip has no movement my other hip was replaced 16 months ago

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It is interesting – I had lumbar stenosis at same time someone I worked with had it. We had it in somewhat different locations in our lumbar area. She found relief from bending over forward as you describe, which many patients would agree with. I found relief by arching my back in the totally opposite direction! It also turned out I had a cyst in my spinal canal at L4-5, so maybe that was why I found relief differently? Not that I will ever know. My surgery and fusion helped for many years, now I have severe stenosis in another section of my lumbar spine. Bah.

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@lotsofpain

As well as my hip problems which will mean a replacement of my hip on the left side I had my right side replaced a year ago my consultant says some of my problems are to do do with spinal stenosis which causes pain tingling and forces me to bend forward has anyone else experienced this and what if anything can be done about it

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@lotsofpain Hello I hope you understand that spinal stenosis is 1of a type of spinal column issue but for every problem there is a fix to a certain degree. I too suffer from spinal stenosis & herniated discs & bulging discs as well as my spinal canal is being crushed onto by my herniated discs in my Cervical spine & part of my thoracic spine, however I have severe spinal stenosis & a cracked sacrum. I also received an injection in my lower back last Tuesday. It helped me & it is still soar. But it takes about 1-2 weeks before you really feel the improvements of the injection/epidural. I wear a special back brace that was specially sized for my back as I'm a big woman. But it is definitely a huge help for when I'm cooking & washing dishes or anything to do that requires me to stand for longer periods of time. Also I would say for you to find a Neurologist or a Pain Mgmt Dr. So they can give you more appropriate hands on approach. There are alot of different types of procedures available for ppl who suffer from this. Some even find it helpful with Spinal Cord Stimulators/ SCS device's to numb the pain by sending electronic pulses to your spinal nerves & there are different types of Neurosurgery that is something that you would have to discuss with a pain mngmt Dr. Etc.
I know it sounds confusing but our bodies for 1 reason or another hurt & we try to do the best we can.
Have you tried any types of light excercizes for your spinal stenosis? Try simple stretching excercizes. I do yoga & simple stretching helps. I also use a roller it's like a noodle made of foam like they use in a pool for floating on. But I use it on my legs as well as my Lwr lumbar & my thoracic areas it is a simple way to gently stretch ur muscles out as your back is against the noodle with a yoga mat underneath ur back & it has made a difference in my pain level's from my many spinal column issue's.
I wish you much better days ahead & do the best we all can. Best wishes & stay strong .

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My pain doctor ordered me a brace & it didn't help at all.

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@jenniferhunter

@collierga I understand your concerns. You will get different opinions from different surgeons, but understand that there is a difference in the level of expertise in neurosurgery for the spine. To get great results, you need to seek care with the very best. It may be hard to figure that out as a patient, and I did my homework in choosing doctors by reading their research papers and learning about their area of interest, as well as any honors they have received from within their chosen field, and not from patient reviews. I am a Mayo cervical spine surgery patient and had great success with my surgery 3 years ago. I was loosing the ability to control my arms because of spinal cord compression, and none of the local surgeons recognized why I was getting pain all over my body. They assumed it should just be arm pain based on my imaging. I found medical literature with a case similar to mine because I looked up a term in a paper of Mayo neurosurgeon, Jeremy Fogelson, and I found what the other surgeons missed. None of them would offer to help, so I came to Mayo and it was the best decision I made. I wish I had come there first. If you can't come to Mayo, look at major interdisciplinary teaching hospitals with medical schools for better surgeons. I saw 5 surgeons over 2 years and just got worse and none would help. Having surgery at Mayo gave me my life back and the ability to use my arms, so the first thing I did when I was able was to paint a portrait of my surgeon. Dr. Fogelson is a spine deformity expert who teaches at Mayo and does both fusion and artificial disc replacements and is very kind and compassionate. I wish I had come to Mayo first, and if I were to have further spine issues, it is the only place I will go. The care was expert and compassionate and efficient. I didn't waste time waiting for tests and consults that drag out for months because Mayo does that efficiently and my testing was complete in 3 days and I had an offer for surgery. I watched a lot of online surgeon presentations and learned enough because I saw so many surgeons that I knew I was getting the right answers at Mayo.

In addition to severe central canal narrowing of the spinal cord, you also have severe foraminal stenosis or compression of the nerve roots. All of this can cause permanent nerve damage, and compression of the spinal cord can cause paralysis and other body issues including incontinence which also can become permanent. A common problem is gait abnormalities with walking. Collapsing discs can also cause the spine to start to fuse itself because the bone remodels from the uneven pressure on the endplates of the vertebrae. It may fuse in a poor alignment and would complicate a surgical repair or possibly make it un-operable. I can't answer that, only a surgeon can. Choosing a surgeon is a very important decision, and you want one who only does spine surgeries and who has a lot of experience. The facility is important too, and I didn't want to be in a for profit doctor owned surgical facility in case something went wrong. I wanted to have hospital surgery where they take time with the cases. I asked and was told that Dr. Fogelson would do 2 smaller surgeries (like mine one level C5/C6 in a surgery in an hour and a half) or one major surgery per day and that was done with neuromonitoring just to check for safety. In comparison, one of the other spine surgeons who saw me did a half hour surgery and did many patients in a day. I didn't want to be rushed through it or have the doctor thinking about time and the next patient when he was working on me.

I had a great recovery and have no pain. I lost some muscle in my arms and shoulders because of spinal cord compression, but that is coming back. It takes a long time, but having surgery at Mayo changed my life. I read a and learned a lot and knew I was choosing a great surgeon. I highly recommend him if you can come to Mayo. Here is my story. Let me know if I can answer any more questions. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

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Hi Jennifer, I read your story on the link provided. Girl, you are a fantastic artist!!!! I'm so glad you are fixed and can paint again!!! I'm so happy for you that you found the right surgeon and that the outcome from the surgeries has given you your quality of life back. Yay! @collierga, so many of us here have spinal stenosis somewhere and other pathologies in our spines. I have every symptom of equina cauda syndrome: https://duckduckgo.com/?q=equina+cauda+syndrome&ia=web so my neurologist sent me for an MRI which showed "severe canal stenosis" on my lumbar region. I've already had three back surgeries, the last being a fusion of L4/L5. Now my L3 is causing anterior thigh pain/throb/weakness. I've already lost some bladder and bowel function and legs are the last to go in these types of situations. I'm very concerned. We saw two neurosurgeons who both said they could remove some ligaments, etc. to free up some space. Currently, they can still see some fluid around my spinal nerves so I'm not an emergent situation. However, I had had extensive testing, urodynamics and anal/rectal manometry which I failed both. So I do have a nerve disconnect. The neurosurgeons keep telling me that I am very high risk. I have quite a few diseases and am on two immunosuppressant medications. I used to be on three until the 20+ years of Plaquenil caused some tissue death in my retina. My fear is losing my ability to walk. I do not want surgery now, b/c my husband couldn't be there w/ me. I am being followed every 3 months by my spine doctor and neurologist. An appointment with each, every 3 months. We'll see. I will keep you both in my heart, mind and prayers. Warmest wishes, Sunnyflower

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@jenniferhunter

@collierga You can call your health insurance and ask for their list of highly rated spine surgeons. They keep track of statistics of success rates, and will have a list of preferred doctors. Then you can look them up. There is also Becker's Spine Review and US News and World report that has information about surgeons. Becker's has a list of surgeons to know and tells you where they practice and what research they are doing. If you let me know where you are (nearest city), I can see if I can find some for you. Perhaps other patients may have suggestions too. Is there a medical school or university teaching hospital near you? I know surgery is very scary, and complications are also dependent on how healthy you are before surgery. That is also why you need a highly skilled doctor because they have less complications, and you need to do your part to be healthy, and have your vitamin D levels checked and optimized and take vitamins and eat a healthy diet. All of that helps recovery. Also ask yourself and any specialist that sees you, what your future will be like in you do no surgery and how that might change over time as bone spurs keep growing and arthritis gets worse. It can change quickly and you may find yourself in an emergency surgery situation. If you do your homework now and find a surgeon you have confidence in, you will be prepared to make a decision when you are ready. If you have emergency surgery, you likely will not have a choice of surgeons, and it will be who ever is on call from an emergency room. If you want to be able to make that choice yourself, you will need to search for a good one. There are patients with poor outcomes, and there may be reasons for that beyond the surgeon's control, so you can't let that influence your decision. If you educate yourself about the procedures and risks, and about what other procedures could address the same problem, you'll have more information for your decision. This is a big surgery, but it wasn't as bad as I had imagined it would be. I found I could manage without pain medicine at all right after my procedure. I just rested and slept. The meds also nauseated me. The pain that was far worse that this surgery was from an epidural injection in my spine done by a local doctor (not at Mayo) that caused shooting burning electrical nerve pains that kept zapping me for several weeks because the fluid injected had no place to go and it put pressure on already compressed nerves. I understand how daunting this is with this hanging over you, and I had significant fears, but I found my own ways to overcome them with creativity, and this became a big learning experience for me. I have to use my tactics again now because I'm facing some oral surgery that worries me, but I know that I have the capability to work though all the emotions, and the final result will be better. I can help talk you through some of that. I am glad I did this surgery. I was able to make a choice that prevented having a disability in my future. I am grateful I had that choice and could choose to have a better life.

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Your talent is amazing and equally amazing is the depth of the research you did and giving back – wow. Thank you for sharing!

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@jeffkboyce

Your talent is amazing and equally amazing is the depth of the research you did and giving back – wow. Thank you for sharing!

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@ Thank you, Jeff. I had 2 years of hoping and searching for a surgeon who would help me locally and those were difficult years. I have a biology degree and previously worked in neurological research, so I knew to look for published literature and understood what I read, and then being an artist and because of biology, I had studied anatomy and understood how the body is put together in 3 dimensions. That gave me a beginning and I also watched all the online neurosurgery conference presentations I could find. It was after looking up a term in a paper co -authored by my Mayo surgeon that I found other literature that described cases like mine, so I knew that this surgeon would understand and believe all the spine symptoms I was describing when I saw him as a patient.

Having spine surgery at Mayo profoundly changed my life. I had a gifted surgeon who did a great job, and I did my homework to work through the emotional part of major surgery and confront and deprogram my fears. It's something I never expected to have the ability to do, but I surprised myself. I worked out a plan of how I would cope and get through it step by step. I learned how to advocate for myself even when I was afraid, and every appointment face to face with a surgeon who dismissed me also taught me how to face them at an appointment. When I came to Mayo I knew enough about spine surgery to know that I had found a great surgeon and there was relief in knowing that I would finally receive the medical help I needed. Being a patient is difficult and can be frustrating, but the patient can have real power in their healing and recovery by embracing the situation, learning everything they can, and making an educated choice not only about a surgical procedure, but also about which surgeon they think is best qualified to handle the case.

I also had a goal and I would not know if I had regained my artistic ability through spine surgery unless I proved it to myself. It's hard to describe how you feel when you can no longer do what you love the most, and trained several years for at art school, because you can't hold your arm up and control its movement. Then when you rediscover this ability and regain the gift that was lost, there are no words to describe that, and the best way I could say it was by expressing it in a watercolor portrait of my surgeon. It was a win-win for both of us and he loves the painting. That is also why I am here helping patients because of what he did for me and because it is a difficult journey. He's a guy who loves his job and I want to give back and express my gratitude any way that I can.

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