My condition will lead to me being a quadriplegic. Advice?

Posted by billsapp @billsapp, Dec 26, 2024

It’s been a rough three months. I’ve had stenosis, a narrowing of the spinal opening, for a decade, but it started pinching my spinal cord about three months ago while on a trip to Peru. Since September, I’ve gone from slight pain in my legs to severe pain in arms and legs, loss of feeling, and loss of strength upwards of 80-90%. I can barely walk with two canes as my legs buckle regularly. Unstopped progression ends with me a quadriplegic.

The orthopedic surgeon in Albuquerque says I need surgery quickly to stop the progression but I may not recover any lost function, although with the quick onset of problems means recovery of function is more likely.. I sent my MRI to Mayo Clinic in Phoenix and I’m looking for a second opinion and possible surgery there. We’ll see this week how fast Mayo Clinic can move on this. I’m failing quickly and if no relief is forthcoming, then motorcycles, surfing, and drums are over and that makes me depressed. Trying to hang in there, I am. The Yule brings hope of lengthening days and I see this as hope of better days ahead. I did get an epidural Tuesday and it helped. Just trying to get some relief until a procedure.

Interested in more discussions like this? Go to the Spine Health Support Group.

davidtrevino | @davidtrevino | Dec 26, 2024

My prayers go out to you, stay strong! Jesus never fails…

billsapp | @billsapp | Dec 26, 2024

In reply to @davidtrevino "My prayers go out to you, stay strong! Jesus never fails…" + (show)

I appreciate your thoughts, but I'm Buddhist.

orloffjr | @orloffjr | Dec 26, 2024

Hello
I'm sorry you're suffering so much. I would get a 2nd opinion locally.Albuquerque should have several good neurosurgeons or orthopedic spine doctors to choose from. Was in a similar situation about 30 years ago. My issue was 2 severely herniated discs at C3 and C4. When the docs saw the MRI he insisted I have surgery the next day. I only had severe paralysis in my arms but he said I'd be in a wheelchair soon. I would say time is of essence, to say the least.
Prayers from a Christian for a Buddhist.

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 26, 2024

@billsapp Welcome to Connect. I think your surgeon has given you good advice about the timeliness of needed surgery. Also in Phoenix is Barrow Neurological Institute with some good surgeons. Typically there is a wait for a good surgeon for a consultation, and then to get on the surgical schedule. I hope you will be able get help soon. You can make a followup call to Mayo scheduling to find out if you are able to get in quickly.

Surgery is not going to give you your life back before spine problems. Your spine is in a delicate condition now, and surgery may stop further deterioration, but there may be some lingering damage or pain. You may need rehab after surgery. When you have a spinal fusion, it does increase the risk of adjacent segment disease, although, you likely have that now without having had surgery. Activities like surfing and motorcycles will put pounding stress on your body and spine. I am a spine fusion patient, and I do all I can to prevent extra stress on my spine. I know you were looking for a different answer, and it's OK to be sad, but realize that in making a choice now, you have a chance to prevent disability and a wheelchair. That is valuable to have a choice in what your future would be. For now, do the best you can to prevent falling. You don't want to add further injury to spinal cord compression. It's something I worried about too. I had spinal cord compression and have a fusion at C5/C6.

billsapp | @billsapp | Dec 26, 2024

In reply to @jenniferhunter "@billsapp Welcome to Connect. I think your surgeon has given you good advice about the timeliness..." + (show)

Thanks for such a detailed and thoughtful response. This is encouraging and gives me some hope for life after surgery.

billsapp | @billsapp | Dec 26, 2024

In reply to @orloffjr "Hello I'm sorry you're suffering so much. I would get a 2nd opinion locally.Albuquerque should have..." + (show)

Thank you for your response. I appreciate hearing from somebody who has gone through similar issues. Trying for the second opinion and surgery as soon as possible.

Christine | @thisoldewe | Dec 27, 2024

Hi @billsapp ,
Your situation is my future... My aunt, uncles, cousins, and mother all have had progressive spinal stenosis. In all cases, surgery gave the best response for maintaining a liveable life.
A quick response to surgery came from the lesson of my oldest aunt. She had been given the recommendation of surgery, but then "thought about it" for a few years [she didn't tell anyone]
She then got the dreadful words, "its too late." She did become paralysed through the remaining years of her life.
Presently, I am getting weekly lidocaine blocks to my lower back and neck, with varying results. Just got bad news from the CT of my neck, but have to wait until the holiday time is over to get more answers.
I wish you the very best in getting a quick direction.
I agree that a follow up call to the office to help 'push' your request is a good one.
Let us know of your progress. We're cheering for you!

willjean19 | @willjean19 | Dec 27, 2024

The decision for spine surgery is not one to be taken lightly. In my experience your life will change, however you will find other activities that will fulfill you. I greatly miss spin classes, long hikes, dancing for hours etc. However I’m incredibly grateful that I’m healthy and alive 2 years post op a 3 level cervical fusion. Walking, Pilates, Yoga and many other activities are something I never had explored. I’m a far more patient and compassionate person. Keep us posted on your decisions and your progress.

orloffjr | @orloffjr | Dec 28, 2024

In reply to @willjean19 "The decision for spine surgery is not one to be taken lightly. In my experience your..." + (show)

To be candid, if surgery is the only option to keep from being paralyzed then there need not be any mention of taking it "lightly". It would take a remarkably foolishly person to not opt for surgery in such a situation.

Colleen Young, Connect Director | @colleenyoung | Dec 29, 2024

In reply to @orloffjr "To be candid, if surgery is the only option to keep from being paralyzed then there..." + (show)

Hi all,
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I encourage you to review the guidelines and pay particular attention to guideline 2. Here's an excerpt.

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Colleen, Community Director, Mayo Clinic Connect