Spine conditions: Told I would not walk without surgery

@gently A spine surgeon needs to make that call, but I do know that artificial discs have limits for acceptable use. Instability can disqualify them. I read about clinic trials for ADR before my spine surgery, and 4mm of displacement disqualified them. Arthritis at facet joints may be another. Bone quality matters when you depend on screws to hold an implant in place. Sometimes an artificial disc is done with a laminectomy. If the decompression surgery you mention is a laminectomy or bone removal to create space, the other factors about if ADR is right for the patient would apply.

When I was choosing between ADR and cervical fusion, I had concerns about foreign materials in my body because I had so many problems after having pierced ears with reactions to metals. Fusion gave me the choice to go totally natural with only a bone graft and no spine hardware because I agreed to stay in a neck brace for 3 months. I knew that C5/C6 would not affect head turning much if any, and that is the same before and after my surgery.

My hunch was right about my allergies and immune reactions. When I broke my ankle, I got titanium plates on my ankle and 6 months later, I had hives nonstop and had to stay on antihistamines. I had pain, throbbing and skin discoloration and I had the hardware removed later. Another risk with ADR is the body can grow bone around it trying to stabilize it essentially trying to fuse and stop the movement.

Have you read information on clinical trials before? You can gain a lot of insight in knowing what the disqualifications are for a procedure.
I think you’ll find it at clinicaltrials.gov

Too many variables are involved in whether you could have an artificial disc placed in your spine to hazard a guess. An experienced surgeon would give you the best advice.

Thanks. Not sure if I wrote you already, sorry if I did, very stressed. So I am trying to just have the decompression without fusion. Did you have that or did they do the fusion immediately ? Did you any bad reactions to just the decompression ?
I read that my spine might be unstable just with decompression, but not sure what to believe anymore. Also everyone's spine is different obviously.

Great questions to ask the surgeon. No he didn't explain much. I don't think my issue is caused by a herniated disc, simply severe lumbar stenosis, around L3-4 and S1-5. He said he thought he could do just decompression but I would probably need fusion either later or immediately. I am really wary of fusion. I don't want to spend the next 10 years in and out of surgery due to my spine shifting above the fusion.

@annie1 I can appreciate how stressed you are and I was there too myself a few years ago. Keep communicating with your surgeon and get as many other opinions as you need. That is normal before making an important decision like this. Like you, I don't want to do another spine surgery. I was planning on just one and being done, and I do what I can to maintain mobility and stretching out any muscle kinks that crop up. Per my surgeon, I try to maintain good core strength and my horse helps with that when I trail ride. It's nothing crazy, and just walking, but that makes me compensate for the horse's movement while I sit up with good posture.

You need to know the reason that the spinal canal is smaller creating stenosis. That may be a thickened ligament, it may be a bulging or herniated disc into the spinal canal, it may be bone spurs growing in the spinal canal or it may be vertebrae slipping past each other a bit and essentially making the spinal canal smaller by being offset. Some people have a congenitally small spinal canal if it is under a certain measurement. Knowing this information may help you know what other questions to ask and that can help with your decision. Keep an open mind when you discuss how to manage the details of your condition.

Stenosis can also occur at the nerve roots because of disc herniations and bone spurs growing out there, and that would affect specific nerves at that level. Stenosis in the central canal has a broader affect of what it can affect.

Lumbar surgery is more difficult than cervical. That is what doctors told me because the lumbar spine is bearing most of your body weight as opposed to cervical bearing the weight of the head, but being more mobile. Loosing flexibility in the lumbar spine would probably affect walking a bit because the patient would move differently. I don't have that experience, but it would have to change it somehow. I have watched surgeons in videos from spine conferences talking and they say L5 S1 is a difficult level to fuse.

Adjacent segment disease also happens in spines that have not had surgery. It happens after spinal disc replacement and after fusion, although there are statistics to show that generally it happens at a lesser rate for artificial discs that preserve motion to a degree. Sometimes the body grows bone around an artificial disc implant in an attempt to stabilize it. Surgeons will take out the artificial disc implant and fuse that level instead. The best way for a spine to exist is the have the body weight evenly loaded and the spine stacked in line. When an injury happens and discs start to bulge they begin to shift the weight one way or another, and that can affect the rest of the spine as it compensates for this change. Bone spurs grow and bone remodels in response to pressure, so it is very common to have bone spurs grow next to a bulging or ruptured disc because there is more pressure there and inflammation there also affects it favoring bone spurs.

Your experience may be different. Some people have good experiences and some do not, but you do need to accept that with surgery, changes will be made and do your best to embrace that change and work toward success. Personally, I'm not worried about my fusion or a future fusion. It's already been over 7 years and I'm fine. There is a bit more neck cracking now and occasionally a twinge of pain at a facet joint that has some arthritis, but I can do everything that I want to do. I've made choices not to do sports that will cause pounding on my joints or spine so I don't add more wear and tear. Surgery was a choice I made when it was obvious I would be headed for some real disability without an intervention. Every choice you can make has some drawbacks, and you have to figure out which of these to accept. Even avoiding surgery is a choice and may have some drawbacks too. Sometimes there is a time limit on when a problem can be operated on safely given the age and overall health of the patient. If I had to do it again or do a lumbar spine surgery, I would get all the information I could before making a decision. I do have a bulging lumbar disc that cracks when I twist, and someday, that could become a problem, but for now, I am doing OK. I had a great surgeon, and he will be the one I consult in the future if I need him.

Jennifer

Thanks so much for this guidance and what is causing my stenosis. The Surgeons never go into detail, I'm afraid they may not want to work with me if I ask too many detailed questions.

I had 2 separate decompression surgeries, the last in 2010 and then 10 years later I had a 2 level fusion. The decompression surgeries went very well and I am happy I had them. Disc herniations at L4 and L5 had compressed the nerve roots. I had a hemilaminectomy and hemilaminotomy. Hemi means one side of the spine, in my case, the left side. In a laminotomy, your doctor makes a hole in the lamina and removes a small piece of the bone to make room for the nerve root. In a laminectomy, your doctor removes most of the bone (lamina). A laminotomy removes less bone than a laminectomy. Since I only had compression of the nerve roots on one side of the vertebra, I only needed the decompression surgery. Your neurosurgeon should explain what he would remove and why. He should have a model of the spine in his office so he can explain the procedure clearly. When you see your surgeon, have a prepared list of questions and concerns. He won't be able to tell you exactly how much bone needs to be removed before the surgery but he should be able give you a good idea. He should also tell you what part of the surgery (if any) will make your spine unstable.

For my fusion of L4-S1, I needed the facets removed at both L4 and L5 on the left side. The facetectomy would make my spine unstable, requiring a fusion. I was very concerned about the fusion surgery, but I am glad I had the surgery. At the time, I was using a cane or wheelchair, my husband was doing our grocery shopping, and I was having trouble both rising from or sitting down on a chair. I wasn't sleeping at night and was in constant pain, worried that it would be permanent. During my consult with the surgeons, I expressed my concern about the possibility of pain after the surgery and they could not guarantee that I would be pain free. I told them that I felt the pain after the surgery would be easier to live with then the pain I was living with before the fusion and that I was willing to have the surgery. It has been almost four years now and although I do have pain at the L2-L3 level, it is controllable and not constant. I don't worry about when or if I might need another surgery and I have not been to my surgeon for 3 years. I do make sure I am kind to my spine and don't overstress it. I use grabbers to pick things up and avoid bending, I reorganized my cupboards to make things easier to reach. I am careful not to twist when I vacuum or sweep, etc. I also made the decision to avoid high impact sports which can be very hard on your degenerative spine. I have also had knee replacement surgery twice on the left knee. I would rather have the decompression surgery for my spine any day than a knee replacement.
Your quality of life is going to be the deciding factor for you. The longer you wait for surgery, the greater your disability and your recovery may also take longer. How much pain are you willing to tolerate? How many sleepless nights can you live with? Are you getting any relief from PT or injections or Cymbalta or any pain meds that aren't opiates? If you have a good doctor that you can trust, ask him your questions, then relax and have your surgery.

Hi Jennifer,
I consulted with a veteran spine surgeon, who is not doing surgery anymore, but just consulting. He told me that my stenosis is mostly coming from bone spurs from the worn out degenerate joints on both sides. He also said that at L4-5 a bulging disc is irritating the nerve root, but the rest of my exsam was normal. He also said something interesting, that 90% of disc bulges or herniation get better on their own, so I'm even more confused in a way about what surgery would be the best. He dosen't think I should have fusion, which is what most of the other surgeons are pushing me towards.
Where do you find the info and/or podcasts about surgery that are unbiased ?
Thanks,
Anne

@annie1 Hi Annie. I think bias is created by the anticipated profit for the surgeon for doing surgery. Most surgeons are independent contractors in hospital systems which is why there are separate bills from the surgeon and hospital. Some surgeons open their own surgery centers or a group doctor owned facility, and that would create a bias toward profits to pay the operating costs and for the doctors themselves. Mayo is different in that they are a non profit medical foundation and everyone who works there is an employee. Surgeons do not get bonuses for doing surgery; their pay is the same if they do it or not, so that removes the bias for personal profit. If a surgeon is pushy about wanting to do surgery, I wouldn't go back. I saw a pushy surgeon who was in their private practice center co-owned by 11 surgeons. I got quality of life surveys in e mails from him for 2 years sniffing for business. By that time, my surgery had already been done at Mayo.

There are many doctor produced videos out there marketing services for surgeons. There are also videos from spine surgery conferences where surgeons are presenting cases to each other, and these usually are unbiased and sometimes honest about the outcome being positive or what could have been better for the patient with a different procedure. Surgeons do tend to speak honestly to other surgeons there and surgeons presenting there tend to be leaders in their field from teaching hospitals and respected medical centers.

Many people have bulging discs. That is different than a herniation where the fibrous outer layer of the disc cracks open and the jelly like nucleus can squish out. When that happens, the disc can loose height, and the extruded material causes inflammation and can cause bone spur growth. Bone spurs and bone remodeling happen because of uneven pressure. I know in my case, my ruptured disc was half the height it was supposed to be and that put pressure on the facet joints which caused some arthritis there. I also had a bulging disc in my thoracic spine and in working with a physical therapist, that straitened itself out and no longer is shown as bulging on imaging, but it was probably minor. I do have a bulging lumbar disc and that level cracks on rotation, but it isn't causing any issues.

You have to weigh your symptoms. Is it something you can live with? If you track your progress and keep written notes, you'll know if you are getting better or worse. I was doing this on body diagrams and drawing maps and defining what kind of pain, time of day, and what body position was associated with it. That is how I knew how fast my condition was changing, and I also saw the amount of bone spurs double around the ruptured cervical disc in 9 months time on MRI imaging as my symptoms were getting worse. I had spinal cord compression and my arms were so weak, I had trouble pushing a shopping cart or driving a car, and then after the exertion, I would have to take a nap because it was physically exhausting.

If you are loosing functions like coordination, bowel or bladder control, having mobility problems or have muscle atrophy caused by nerve compression, that is more serious. That is when you compere the risk of surgery and pain it causes against the benefits you can get from surgery. When you decide on surgery, there are many more things to consider about which procedure or solution is best, etc? Take your time with major decisions like this and getting many opinions is a good idea before making a decision. If you want to get an opinion from Mayo, you'll need to know if your insurance is accepted there, so a call to the billing department is a good idea. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I can suggest a book that I read called "Back in Control". It was written by a spine surgeon who became a spine surgery patient himself, and he is of the opinion that there are too many unnecessary back surgeries. I found that because he gave a presentation at a spine conference that I found online, so I looked it up and bought his book.
https://backincontrol.com/
One thing to also realize is that contemplating spine surgery is scary stuff for most people, and that fear and anxiety will increase pain levels a lot. If you haven't been through spine surgery before, you don't know what to expect. This is something I had to come to terms with and I learned how to talk myself out of allowing fear and pain to run away with me, and I was able to look at my situation objectively rather than emotionally. I was working with a PT who also doing myofascial release and she kept realigning my spine into the best alignment and doing electric stimulation on the nerve roots to block pain signals, and that helped for about a week. That was before my spine surgery when I was having trouble finding a surgeon to help me, and she was able to buy some time this way. Some patients do spine injections to put off surgery. I had one, but had a bad reaction to it, so I wouldn't do any more of them.

I asked my surgeon what I could do to help me avoid needing his services again. He told me to maintain my core strength to support the spine. I'm glad to know he'll be there for me if I need him.

Working with a physical therapist is a good idea. They can work on core strength and strength for good posture which helps take pressure off your back. They also are a good sounding board to ask questions because they rehab patents after surgery, and they kind of have a sense of who's who among surgeons and tend know the good ones if they have seen their patents after a procedure.

What are the symptoms that you have now? Have the symptoms worsened over time?

Jennifer

My symptoms are 80% in my legs, my calf muscles throb all the time, worsening after I walk even a few minutes. I also get severe cramping in my calf muscles. The thing that worries me is that my gait has changed and my pelvis seems crooked. I was a dancer so I feel these changes acutely.
I'm a bit angry with Mayo because I asked to be seen there and they turned me down giving no reason and when I asked they cited some legal reason that they didn't have to tell me. Maybe I could approach them again.
As far as PT, I haven't found any that do quality work like what you described except one who dosen't take any insurance. Where do you live if you don't mind my asking ?
You are so knowledgable. Are you in the medical field yourself ?
Thanks for all your help and I will try to get that book you mentioned.