Will I ever recover from my operation for spinal stenosis?

@covenantdga
Wow! You had a lot of fusion done! What were your symptoms before surgery and why did they need to fuse so much of your spine? What did they tell you would be the benefit of doing the surgery?

I have severe congenital cervical and lumbar spinal stenosis. I had ACDF surgery on my c5c6 vertebrae to cervical spondylitic myelopathy injuring my spinal cord (affected my head/neck/arms/hands/legs, strength, walking, bladder, etc. ). I have small and large fiber neuropathy that has worsened over the last 7 years. I get lumbar spine injections in my L4L5 to help with nerve pain that radiates down my hips/buttocks/legs/feet. The doctor told me he has many who get lumbar surgery and still need to get injections to manage pain. They are doing injections to hold off on surgery since they said it will impact my mobility and said I am too young (54).

How is your lower body large and small nerve functioning now? Do you have pain/numbness/weakness in your limbs? What medications do you take? What physical limitations do you experience daily?

I can’t tell you how much I appreciate you responding back. So sorry to hear about all that you have been going through, particularly at 54. Hearing about your situation makes me realize that mine pales in comparison.

My answers to your questions are as follows:

• my symptoms prior to surgery were an advance of my peripheral neuropathy. I had extremely minor symptoms but had a gallstone attack that sent me to the hospital just over three years ago that went into acute pancreatitis/ necrosis/ sepsis. The doctors told my family that I while not make it. I was in a medically induced coma for three weeks and in the hospital for a total of nine weeks. All my muscles had atrophied so I basically had to learn to walk, stand again. My peripheral neuropathy went from minimal to full blown neuropathy in both my feet from the ankles down. I had scheduled a Laminectomy for l-4 til-5 but when I went unexpectedly into the hospital with my gallstone issues and complication, my surgery was postponed. I had fallen twice and I could tell that the nerve connectivity was not there. When people saw me walk they would ask “what is wrong with you ?” I would answer “my legs don’t work”. It looked outwardly like I had MS or something but the diagnosis was mixed. Vanderbilt said that I had peripheral neuropathy, which I did and a neurosurgeon from one of Nashville’s well respected neurology groups said that I had severe spinal stenosis. But when I went to reschedule my Laminectomy and Spinal Fusion surgery it went from l-4 and l-5 to T-10 to S-1. I remember crying at the neurosurgeon’s office as he showed my wife and I how much of my back would be cut on. Spent time praying whether or not I should even have the operation but knew that my mobility was grind worse and Vanderbilt even after a year and a half was still sending me to various other doctors associated with VUMC that I finally decided to have my surgery done by the original neurosurgeon who has performed surgery on me back in 2006 for two ruptured discs.

So in May of 2022 I had my Laminectomy and Spinal Fusion surgery. As I said in my previous post, it was brutal. Have never been in so much pain and have suffered from kidney stones for most of my life, has double knee replacement surgery in 2016 but those were no where close.

So the neurosurgeon pronounced my surgery successful as my spinal canal no longer would be pinching on any nerve which was causing my pain and mobility issues. I had my usual 3 week, 3 months, 6 months and then my 1 year follow up. For the first three appointments I was told that nerves took time to hear and that it would probably be a year before they were healed. At the year mark I was still experiencing the same symptoms. The neurosurgeon showed me the x-rays and says that the spinal canal is unobstructed. I still have an area probably from about 6” t from one side of my lower back to the other where it is still numb. This started once I got out of my back surgery in 2022.

So I decided to get a second opinion from another independent spine specialist in July of 2023. After having a CT Scan and MRI done he tells me that my back surgery did not take and that some of the screws were loose at top and at the bottom of where my surgery has been done and something else which I can’t remember. He gave me a three different things he could do surgically with the most minimally evasive being going through my belly button and the most basically going through a redo. I was stunned. I asked about whether or not he thought it would improve my mobility and pain issue and he said that it as 50 / 50 at best. This spine specialist is very conservative and apparently only operates in 10 percent of his patients.

So, I continue to rejoice in each day with the expectation that one day, I will probably be in a wheelchair and / or motorized scooter. My primary issue is that when I try to walk, besides the obvious and my mobility and pain, I get extremely fatigued to the point where I am incapacitated by my exhaustion. Have to lay in bed to recover. I don’t know if this is normal or not.

My medications were Gabapentin after my gallstone surgery up and until the beginning of last year when I got off it as I could not tell any difference in how I felt. I was on Methocarbamol 750 MG after my Laminectomy and Spinal Fusion and am down to taking one (1) tablet per day. I also was one Oxycodone with 325 MG of Tylenol took it several times a day but started stepping down from that last year and was almost completely off my pain medications around the first of October of last year. I occasionally take a half of a 5 MG tablet if I am experiencing a higher degree of pain which is usually brought on by days when I am more actively and walking longer distances or am in a car traveling for longer periods of time besides just out running errands.

Sorry, did not mean to write an epistle, but wanted to respond back to you.

Do hope and pray that your situation improves as you have certainly been dealing with chronic back and spinal chord issues.

@covenantdga
Thank you for responding! You are dealing with a lot, too. I anticipate being in a wheelchair at some point, too, and also struggle with exhaustion and extreme fatigue with little exertion. I am in bed or on the couch for most of the day which makes it very hard to get much done. It makes me very depressed to not be able to do much or work anymore but my faith is what I hang onto. Jesus gives me hope and spiritual strength and I ask God to help me each day.

I am taking Gabapentin 100 mg only at night, fluoxetine and bupropion for depression, omeprazole for gastritis/esophagitis (took too many nsaids for pain over the years), and used Salonpas lidocaine pain patches which helps with nerve pain. I also take alpha Lipoic acid for small fiber neuropathy (pain/numbness, burning, pins and needles in my feet). My balance and dizziness seems tied to my neuropathy and my gallbladder stopped working (biliary dyskinesia) which may be due to autonomic nervous system dysfunction.

Did you ever get tested for small fiber neuropathy? I had a punch biopsy of upper thigh and calf which confirmed nerve damage. My large fiber nerves seem affected in my hips and legs where it is hard for me to walk at times. I also have weakness in my arms/hands and drop things. I seem to have flares where my symptoms and difficulties walking/pain increase and decrease but not sure why (also have low grade fevers).

I pray you get answers on whether surgery could help you. Especially if the hardware is dysfunctioning or loosening. Did they tell you which sections of your spinal cord and nerve roots were being pinched or damaged that warranted so many layers of laminectomy/fusion? Did they tell you how the surgery would help lessen the nerve pain and damage? Have you had a MRN which maps your central nervous system and peripheral nervous system function/damage? I am hoping to get a MRN to see how my cervical spondylitic myelopathy damaged my spinal cord and peripheral nerves and where there is permanent damage. I am hoping to prevent further damage, if possible. I was told at one point that if I fell, I could be paralyzed. I did fall 2 times before I had surgery and haven’t fallen since (but have been close due to balance/dizziness issues). I have a cage and screws in my neck now and feel a bit like a cyclops. 😉

I’ll pray for you to get help and answers to get some relief. The numbness in your back where you had incisions may not come back. I had a C-section and have numbness where the incision is and had my son 14 years ago. The only way to prevent permanent damage is to find the source of the problem and whether it is mechanical or something else neurologically going on.

God bless!

This may sound silly but I think part of my problem is that my neighbour takes my little bichon frize/poodle for a walk every day and I don't. I am making sure that I do get a short walk with her in the evening. I watched some videos on YouTube the other night on spinal stenosis. One had three exercises that are good to do and a lot of advice on what not to do, like twisting.

This seems to fit in with what is happening to me. If I ignore the pain and continue gardening, walking, housework, by the end of the day, I can be pain free. I just have to remember to let my left side and arm do most of the hard work. That's not easy if you are right handed.

I saw part of a program on PBS Seattle by a woman who has written a book called, "Don't Get Out of Bed." I am going to see about buying it. It's all about exercises you can do just about anywhere.

I get Dr. Mirkin's blog and he just wrote an article about exercise--And it's not the extreme runners who live a long time. They don't. It's the people who just plain keep busy walking, gardening, etc. In other words, what you might call "low impact."

Another doctor whose blog I get, recommends to many of his patients, to get a dog. His reasoning? You have to walk that dog, rain or shine. My little Miah is a rescue for San Diego. She had a partner, Tango. If I wanted her I had to take him as well. The two brought joy to me and to my neighbours. Tango passed away a year and a half ago. Miah and I both miss him.

Have a great day! And do your best to get back to doing those exercises.

Thank you, I appreciate you taking the time to reply and tell me your experiences. It makes me feel very fortunate that up until recently, I've been very lucky.

On reflection, I think this was something that i was born with and it just got worse over time. I can remember just before turning 4 years old, going for a long walk with my Mom. I got such a pain in my right side, I couldn't move. I used to get a pain in my right side and worry if it was appendicitis.

I know what you mean about being exhausted when you are in pain. I have a similar experience. Yesterday, I kept moving regardless and it was an effort. Then after supper, i tackled my filing cabinet and cleaned it up. I was able to go until almost midnight without any problems.

Best of luck--and keep experimenting to see what works best.

Your day sounds a lot like my day. Being horizontal laying in bed seems to be the only times my symptoms lessen.

But, also like you, have decided to our my hope in the One Who created me and knows every hair on my head. I hold on to His promise.

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.”

2 Corinthians 4:17

Am looking forward to the day that there is no more pain, no more tears no more suffering, but until then may the LORD give us the strength for each and every day !

My acupuncturist walked out of hospital and hasn't had the challenges that I've had, It depends on a lot of things. I didn't feel like I was making progress until about six months after the operation. I'm wondering if you have an infection where the pain is coming from? I'm not a doctor.

I'm going through old files and discovered a medical report that states that I have cysts in my liver. Now I'm wondering if that is the cause of all my pain on my right side.