Why was I never told about spinal health when I was younger?

Hi @beigletony. Hearing that you could become a quadriplegic from your neurologist is pretty unsettling news. I’m 70 myself and finding aging with a level of dignity can be challenging. At this point in life we have a lot of ‘wear and tear’ on our bodies!

What did the results of your MRI suggest? Was it spinal stenosis? That is a condition when the space inside the backbone is too small which can put pressure on the spinal cord and nerves which travel through the spine.
According to an informational article from Mayo Clinic, “The most common cause of spinal stenosis is wear-and-tear damage in the spine related to arthritis.”
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961
If this is your diagnosis, there are successful surgical procedures to help open the affected areas to create more space within the spinal column.

What types of symptoms are you experiencing that led to having an MRI? Did you neurologist give you options for treatment?

Hi Lori...
First, thank you for responding. I can give you the impressionss of each MRI...
Lumbar- IMPRESSION:
Old superior endplate compression fracture and Schmorl's node at the L1
vertebral body.
Multilevel disc disease, central canal stenosis, and neural foraminal stenosis.
Thorasic - IMPRESSION: At the T10-11 level there is mild disc bulge and moderate left
facet arthrosis with
hypertrophy. The facet hypertrophy results in abutment of the dorsal aspect
of the cord.
Cervical - IMPRESSION:
Degenerative changes and neural foraminal stenosis at multiple levels. Mild
central canal stenosis at
the C5-6 level.
Now I can understand fair wear and tear, but with no urgency until I hit a certain age? Shouldn't someone have told me like 20 years ago about spinal health? Does that sound silly?

@beigletony - I totally appreciate the way you presented your question. I also understand your quandary over what to make of your surgeon's more or less offhand remark about a wheelchair. Hearing such things is a shock to the system!

I was 70 years old (two years ago) when I was led to a similar diagnosis. Weight was acceptable. Active. Regular exercise. ..I was primed for a great run into my 70's. I had experienced back and neck pain off and on for decades and had carefully managed the discomfort. I was able to stay at the higher end of "active" through my 60's.

But the pain intensified. I hit the wall when I found my legs randomly and quickly going numb to the point if I didn't sit down immediately - I was going to fall down. I was scared for my personal safety. Even though I felt I could still handle things on my own - My PCP grew very concerned when I told her about the sudden-onset-leg-numbness. She explained tyhe numbness could be the beginning of a very slippery slope that could force me to a wheelchair.

Long story short: Two surgeons, several diagnostic doctors (physiatrist) plus many MRI's and X-rays later...I was faced with the lousy choice of either (1) Hoping I could successfully handle my spinal issues on my own with the obvious risk that - too long a delay in treatment (for me, surgery was the only option) could result in permanent and irreversible spinal cord damage or
(2) Submit to the lengthy process of surgical correction without any complete assurance the surgery would fix all my issues.

I understand your frustration with the whole process. You've cared for yourself and didn't expect to receive such a significant diagnosis. I learned that highly active older adults - especially if they have some variation of arthritis - can develop severe spinal damage just through the normal course of life and aging.

I had a four level ACDF in Feb 2023 (fully resolved and not so bad a recovery) and a four level lumbar procedure, in two parts, in May of 2023 and recovery is progressing slowly, even now.

The child's version: If you use something over and over for 70 years, you should expect it will break down at some point.

Now the difficult part...what will you do about it? Care to discuss options and experiences?

Thank you for responding. In all honesty, I don't get the sudden "you have to do THIS" iveness , when there was no emphasis of any kind when I was younger. If now it was an absolute emergency, I could understand, but having a neurologist mention it in passing?

@beigletony maybe get a second opinion. Not sure that remark about a future in a wheelchair was appropriate. I have 7 spinal fractures, lumbar and cervical stenosis, degenerative changes etc. etc. and no doctor has ever spoken like that to me. My neuro and I discuss the possibility of surgery and agree it is not time yet. Maybe it is time for you, maybe not, but you deserve empathy .

@beigletony - I would strongly disagree with any medical opinion that proclaims: "You have to have this spinal surgery NOW!" Unless your back issues are trauma induced (you didn't describe such a trauma) diseases such as stenosis and spondylolisthesis are more progressive than sudden-onset in nature.

In my case, that progression spanned more than two decades. When I started to experience frequent total leg numbness - tests indicated a newly developed "slipped disk" now putting potentially debilitating pressure on my spinal cord. With that, my progressive disease had just turned into an immediate need requiring treatment.

"How" your diagnosis of possibly becoming wheelchair bound came to be is relatively unimportant though certainly frustrating to you. Focus on what IS important: What do you do now? Develop a treatment strategy in partnership with the best neurosurgeon you can find. Meet with a physiatrist who can provide perspective - a doctor who thinks about back pain, not surgery.

@beigletony
I am a 55 year old female who was diagnosed with a congenitally narrow spinal canal and lumbar stenosis degenerative disc disease 12 years ago (when 42-43). I was told my spine looked like it was that of someone 20-25 years older than me. My pain started after having my one and only pregnancy/delivery when 40.

I was told by a surgeon he didn’t want to do surgery and the main recommendations were to lose weight, exercise with low impact, don’t carry heavy things, etc. Fast forward to 2017 when I was 46-47, I started with a long list of symptoms, including pain/weakness/numbess. I was diagnosed from then until now with congenital stenosis in my cervical and lumbar spine, degenerative disc disease, osteoarthritis, small fiber/peripheral neuropathy (sensory/motor nerves impacted), cervical spondylotic myelopathy (spinal cord compression injury), neurogenic claudication (pain/weakness/numbness low back down to feet), etc.

I was told by my 3rd orthopedic spine specialist/neurosurgeon after reviewing my MRIs, symptoms and physical exam that if I fell, I could be paralyzed from C5-C6 level down due to my disc/bone spurs pressing and flattening my spinal cord. That was reality and not a push for surgery. I actually fell in 2018 and 2020 so I was scared about this reality. I am a single parent of a minor child with no family. I trusted his advice to get ACDF surgery to relieve pressure on my spinal cord and stabilize my neck plus stop the progression of the injury. If you don’t get surgery, the reality is it can cause permanent spinal cord injury. My neck/shoulder pain, daily headaches, bladder control issues, and walking improved post surgery ( no longer felt I was walking with cement boots on). The residual permanent damage is in my arms/hands. They are noticeably weaker (was a former amateur hobby bodybuilder with strong arms/biceps but that is long gone and hard to accept).

I had lumbar spine decompression and fusion surgery on L3-L5 on 8/2/2024 to help improve my quality of life so I could walk/stand/sit without pain/weakness/numbness. Three weeks post surgery I am noticing improvements every day and I am hopeful for recovering some of my former functioning.

I wish you the best in getting second and third opinions for your condition and treatment options. Personally, I did not get much help from my neurologists. I was able to finally get help when I met with my 3rd surgeon because many of my symptoms were caused by structural spinal issues more than systemic issues. Don’t give up advocating for yourself, asking questions, researching terms, understanding your conditions and diagnoses/records, etc.

I don’t think spine health is on a doctor’s radar when we are young unless we have a congenital condition or an injury or scoliosis as we grew up. Someone told me once that “backs don’t forget.” And we work our spines pretty hard. I was told I would end up in a wheelchair as well, and that was over fifty years ago. I am still upright with a thoracic spine brace and a lumbar spine brace ( whichever is worse on any particular day). I can’t have a fusion ( I refused several times before retirement as I was “too busy.”) I have serious lung issues and weight issues ( too skinny) preventing surgery now. I think doctors open their mouths and say stuff like what was said to you and to me, but haven’t taken into account the humanness of us. We aren’t inanimate objects where predicting an outcome is predictable! Not so much with human beings. Good luck to you and think about finding a different orthopedic doctor. Backs don’t forget, and MRI’s tell it pretty well, but with the correct treatment you may do just fine. ( irene5)