Lumbar stenosis

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I have been diagnosed with spinal stenosis with neurogenic claudication and neural foraminal stenosis. I think what it means, is that my spinal column at its lower end is being crushed. I will see a neurosurgeon on the 22nd to get the details and what course of action to take. I had back surgery a little over a year ago. I'm wondering if this is an extension of what was going on at that time. Does anyone here have any knowledge about this condition?

 

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Hi I can tell you a lot about spinal stenosis. I’ve had 5 major back surgeries due to this condition. I now have rods and screws from L1-5 and a titanium plate holding S1-5 together. Unless it is critical, let me give you my most critical advice, don’t let them operate. My surgeries have destroyed the nerves between my spine and bladder. That means I can no longer tell when I need to pee. My body just goes when it wants. They wanted me to Catherine myself 6-8 times a day to release my urine. I did this for 2 years. It is not a pleasant experience. I have tried many other options, but diapers are the ticket for me. From what the neurosurgeons tell me there is nothing more they can do. They now want to operate again to fuse my L1 and L2. I’ve decided no to more surgery unless I’ll be wheelchair bound. Each surgery takes roughly 6 months healing time. If I had to do it over again, I would not have it done. I live in constant pain and take Hydrocodone and oxycodone to get me through my day and to sleep at night. Be cautious and ask many, many questions before undergoing surgery. Once you have surgery, there is no going back. Work closely with your neurosurgeon before undertake anything. I don’t mean to scare you off, but it’s a huge decision. Take care guy and Good Luck to you in your choices. I’ll leave you with this. When I had my first surgery, there wasn’t any other options. My fist surgery was about 35 years ago. Again, good luck in your life’s journey. I hope this helps.

 

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P.S. When I was getting physical therapy for my lumbar spine, I was taught how to do kegels properly, to assist my moving of my lumbar spine with my muscles. I didn’t learn because of my bladder, but I did practice them a lot more when incontinence set in. So if you aren’t already doing those, learn how. I think they definitely help, though now actually have trouble releasing the kegel tension like when I need to pee. So do consult with a PT.

PT has done nothing for spine pain relief. Actually, I think the only thing PT has ever helped me with is kegels and a sprained ankle. I’ve had PT for my knees at five periods in my life, starting at age 19, for my knees and it’s never helped AT ALL with them.

Another thing you can do to improve your lumbar pain and prevent further stenosis is to massively strengthen all of your core muscles, your thighs, and your calves, so you’re primarily lifting with your muscles and not your spine. Always bend your knees when lifting - though that doesn’t help when you need knee replacements!

The other day I was talking about a special gym that I have a referral to. It’s at The Orthopedic Specialty Hospital (TOSH) here. The program is called Arthrofit. It is staffed by no less than five nurses and PhD PTs at all times with a max of 15-20 patients. So you are always under supervision when you’re there and can avoid getting hurt further. You go through a very extensive initial evaluation to determine your exercise limits. They also have a warm pool.

I know two people who have attended and loved it. Maybe you can find a similar place near you. Ultimately, stenosis is arthritis. I used to be a gym junkie but those days are over because now my risk of increased injury is too high. Insurance pays for the initial assessment then the program costs $60 a month - a bargain for any gym!!!, without insurance. My insurance doesn’t cover it, but my dad’s insurance covered it 100%.

TOSH Arthritis Program

TOSH Arthritis Program offers sports medicine and performance, athletic injuries and prevention, and sports performance services providing Athletic injuries and prevention, and Sports performance located in Murray, UT.

intermountainhealthcare.org

 

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Thanks Snow. Your story is inspiring and your tips help for those willing to try. I’ve been in chronic pain for so long I’ll do most anything for relief. Iam a very active person and I find working through the pain helps me a lot. When I am working hard and in the zone, the pain is much less even without medicine, so stay active and find something you love doing. I also lost my right leg due to a flesh eating bacteria. But I haven’t let it stop me. I can do everything I could do before I lost my leg, just differently. I take gabapentin for my limb pain. The best tip I can give you is to stay active and positive. It helps fight depression and pain.
Other people don’t understand your pain and they tend to stay away from you. My best friend doesn’t understand my pain and because I wear a diaper he shy’s away because people are cruel to people with disabilities. I rarely ask for help from anymore. My wife helps me a lot and I am so proud of her. She has her own demons to deal with. So I help her with whatever I can.
Life can still be good and is worth living the best we can. So try to enjoy your life regardless of our life setbacks. Stay positive and keep moving regardless of the pain.

 

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Agreed with above - avoid surgery if you can, that said it can be helpful and was for me twice, but then things deteriorated and other discs etc went too. Make sure you get an MRI before doing anything, only way to know what is going on. Also agree PT and LOTS of stretching and yoga type exercise and core strength activities are ideal. Lots of great advice above on other options! Massage has been useful to me and just walking as much as possible. That said, with your condition - similar to my own - when you irritate nerves it is not fun. I have found that a back brace can be your friend. Many PT's and Dr's frown on it and insist on surgery - oddly enough a fusion surgery does the exact same thing as a brace. There is NO medical evidence for or against a back brace (seriously look it up - I can send articles)In fact I wore a cast and then a brace for months before one of my surgeries l4-S1 at it mimicked the same thing a fusion would do. I have 4 different custom braces (LSO, TLSO, CTLSO) for however I feel. I wear them when I have a flare up - I take some meds, stretch, ice/heat, brace repeat until I feel better. I am also to a point now where I can tell I have overdone it, I throw on the brace for 1/2 to a full day - no issues. My Dr's support its use now and I have had less deterioration since using braces. It is trial and error - you need to be your own advocate and try various things or find other Dr's. If you do try a brace, get a prescription if you can and hopefully insurance will pay for something custom (Hanger clinic is wonderful). The person I saw literally makes dozens of braces a week for people like us ;-) Good luck and I hope you find relief.

 

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@totalinco Excellent recommendations about braces. I only have a generic one, but I often forget to use it when I should. Thanks for the reminder! And yes, I probably should get custom braces for my cervical and lumbar regions. What do your custom braces look like / any chance you could post photos? Thank you!

 

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Sure happy to share, I found the off the shelf ones are OK but the custom stuff is just fantastic. I have had quite a few through the years as I gain/lose weight body and condition changes. I also keep an eye out on eBay and have lucked out with near perfect fit before (they can all be adjusted via heat gun too.

Attached are a couple CTLSO's- I wear these most often, probably 3-4 days a week and one of the shorter TLSO, dont think I have too many others but can dig them up if needed? I know they look big and crazy but they really do work. I will wear the blue one and TLSO in public, the other one is a bit big and mostly for home.

That TLSO also has bars on the side that connect to my KAFO's these are leg braces, I also have shorter AFO's. I have L5 nerve damage and foot drop - did not wear braces for many years with this issue and now have torn up feet, knees and hips so I wear them a lot too ;-) Like I said, a good orthotics person is a life long friend LOL

Hope this helps?

 

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@totalinco This really helps; I didn’t even know braces like this existed! Thank you very much! I’ll talk to my spine/pain doctor about getting an Rx from her for a custom-fit. I’ve messed up my hips and feet, too, but worse, my knees.

 

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@snow I know right? I did not any of these existed either and it was the Brace folks (orthotics/prosthetics) that helped me and are your friends, no doctors had any recos (or help LOL) They just write the RX. I have KAFO's for my knees (and foot drop) and they are amazing as well. Good luck.

 

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I can’t express, how much I agree with Back surgeriess!! I had no choice as my spinal cord was being so compressed that, Cauda Equina, complete saddle anesthesia, which three different opinions said it was an emergency surgery that needed to be done. I have a 6 level fusion in SI-t1, they also did a 3 level fusion in neck. I do not do well and they want to do another 2 level fusion in back. I have had back pain since a car accident when I was 15. My spinal surgeon also found the lesions in my cervical areas, that are demylenating lesions on spinal cord… MS

Back surgeries lead to additional back surgeries. I love my surgeon!! She was an architectural engineer for building skyscrapers and one day decided she wanted to be a spinal surgeon. She has said to me, I am her most complicated case and when I first went to her, she thought a simple laminectomy and diskectomy would solve my issues, basically clean up from a surgery 5 years before. I am in pain every day of my life, I will not take my pain medication unless I absolutely cannot take it, there is such an addiction problem in my family, I am afraid. I have lived with this pain since my 20s. I have been told I have a very high pain tolerance, injections, when they burned both sides of nerve area while awake and multiple spinal taps, don’t phase me.

Unless it is threatening total mobility, I would shy away from any back surgeries.

I just turned 50 was such an active person, played all sports until these last surgeries, I just wanted to play softball until 50 and my 1st emergency back surgery was literally two weeks prior to season starting. Now I walk with a four wheel walker, have an AFO and my left foot now contracting in. That is most likely due to the MS.

As, I have said if at all possible avoid back surgeries!! I have had 5 just in the last year in and a half. My Surgeon says if she were able to somehow do a spine replacement she would choose me to attempt it on, says I am her most fascinating case. I said that is not a good thing for me, she said that is very true.

Sorry went on and on. Good luck in all your decisions, may God and the fine surgeons help you make them!!

 

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@Wbwayne11 Wow, I feel for you, both emotionally and physically. My spine problems seem like a rainbow unicorn compared to yours; thank you for that perspective. How do we all manage to get through these tough things? You e certainly had too much extra piled up on your life’s plate!

 

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My aunt passed away two weeks ago during her sleep from stroke. She had a fusion of her entire c-spine and also the entirety of her lumbar region. Her spine just continued to collapse and disintegrate after the surgeries. She experienced no pain relief from either of the surgeries she had. Instead her pain tripled in density. She refused to take pain pills and became a bitter old ogre, forced to live alone because of how mean she was because of how much back pain she was in. She was never able to pick up Oakley. The surgeries compressed her spinal cord so much that it was limiting how much blood was able to pump through her body to reach her brain. During a cardiac exam, they found she was only getting 10% of the blood flow she needed to her brain. She died of a stroke. She’s a great example of why back surgery is useless and how, in fact, it can actually end up killing you, like it killed my aunt. Her original pain before surgery was a walk in the park compared to her pain after the surgery. To the dismay of my family, she refused any kind of pain medications for reasons unknown to us.

Hopefully one day medical research make strides that can actually help us, but I never read about any kind of back research going on. It’s one of those areas, similar to urology, that they seem to just not care about, even though lumbar spine pain is the number one reason for disability in the world so I’d think it should be the top research point of a medical research facility.
My poor aunt suffered for four decades thanks to spinal surgeries that only made things worse.