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Re: Spinal Stenosis

isaku5

isaku5

Ideal_Rock
Joined
Aug 15, 2005
Messages
3,296
Have you or anyone you know been diagnosed with this? If so, what was the best treatment?

I was diagnosed a few days ago and have 'googled' it, but nothing positive is showing up. It did explain many of my symptoms, but really nothing positive. I'd really appreciate hearing about others' experiences (good and bad).
 
Sorry to hear that. It's treatable, though.

My dad had spinal stenosis a few years ago. His alarming symptom was that he lost sensation in his hand. While he was sitting at the computer one day, a bunch of characters were appearing on the screen and he did not know why. When he looked down, he realized that his hand was on the keyboard and he didn't know it because he couldn't feel it.

My dad went to a doctor the next day. The doctor said he really should refrain from getting in a car or otherwise traveling due to the risk of paralysis if his neck were to get jerked around (i.e. sudden stop, getting rear ended or minor accident). The narrowing spinal canal in his neck area was creating pressure on his spinal cord. The doctor recommended surgery (I think it's called decompression surgery) in a procedure that required entry through the front of the neck. This caused my dad concern because of risk to vocal cords, so he got a second opinion. The second doctor said he could do surgery through the back of the neck, so my dad went with that approach. He had surgery, stayed in the hospital for a few days and has been fine since.

I don't know if there is non-surgical treatment if your circumstances are different.

What did your doctor say?
 
Thanks for your reply, marypoppins. It will be very helpful.

My neurologist ordered the MRI of my lower back and thighs which took place on March 11 of this year. The technician who did the procedure told me that the results should be available in a little over a week. I waited and waited and then tried to phone her office many times. Every time I had to leave a message which was never returned. Finally, I called our family doctor who had just received the results the day I called. I made an appointment and last Thursday we were squeezed in. No mention was made of spinal stenosis, but he described the narrowing of the spinal cord in the lumbar area and explained that there wasn't enough 'fluid' getting through to support my legs. That's all he said. I came home and looked up some key words and what popped up was 'spinal stenosis'. I read the info about it and it nailed my symptoms to a T.

The treatment suggested was surgery. That was just plain scary (think paraplegia etc.).

Before doing anything drastic like that, I need a more precise diagnosis - preferably from a neurologist. I guess I should request another opinion hopefully from a specialist who will be available.

Was your dad in a lot of pain?
 
Wow, that seems like a really long time to wait for MRI results. And I find repeated failures to return phone calls unacceptable. Unless this doctor has a fabulous reputation for treating your problem, I would definitely be looking for a more responsive neurologist. In any event, definitely get a second opinion from a neurologist.

My dad had cervical spinal stenosis (his neck) rather than lumbar spinal stenosis (lower back) but the concept is still the same. There may be more conservative treatment for LSS (pain management in the form of pain medication or muscle relaxants, physical therapy and spinal injections). I'd inquire whether that would be appropriate for your condition as an alternative prior to trying surgery.

I don't think my dad had any pain symptoms, just lack of sensation in at least one of his hands. Sorry to hear you're in pain. Is it going down your leg like sciatica? I hear that's very painful. Try not to freak yourself out with too much online research. Sending dust your way.

Maybe one of the medical PSers can provide more information.
 
I'm sorry to hear about your diagnosis, Isaku.

My husband was diagnosed with congenital spinal stenosis of the cervical spine twelve years ago at age 30. His symptoms were severe--shooting pain down his limbs followed by no sensation at all was the primary symptom.

He had an MRI, saw a number of surgeons, and ended up flying down to Florida to meet with the surgeons who were doing the cutting-edge laproscopic stenosis surgery at the time. He had a surgery scheduled but backed out at the last minute because he found something else that managed his symptoms.

At the time of his diagnosis, my husband was an occupational therapist. He wasn't completely convinced that OT was what he wanted to do with his career because some of their practices didn't gel with his studies of biomechanics. It turned out that he was at a professional convention shortly after his diagnosis and he met a man who was doing something called Muscle Activation Techniques, MAT. He sought some MAT treatments, they successfully managed his symptoms, he cancelled the surgery, and now 12 years later he has been managing his pain with MAT ever since. AND, he left OT to study MAT, and went on to become the seventh MAT Master Specialist in the nation. He's been working as an MAT Specialist for a decade now, and credits his physical well-being with MAT.

Of course, different modalitites work for different people, so you have to figure out what works best for you. My husband was told by multiple surgeons that his stenosis was so severe he would need surgery immediately. He revisited the Florida surgeon after two years of MAT treatment, and the surgeon was shocked to see the results of his MRI, he was sure my husband had had a surgery here in Chicago. Luckily, he hasn't had to resort to surgery yet.

The other thing he did after his diagnosis, of course, was to stop all physical activity that aggravated his symptoms. He was bicycling multiple times a week, playing volleyball, and other things that were not good. Now, with two MAT treatments a week, he's able to get on that bicycle and typically logs between 60 and 100 miles a week. His symptoms still return two or three times a year, but they're mild compared to what he was experiencing twelve years ago.

Big hugs to you. I know this can be a scary diagnosis, but the good news is that there are non-invasive techniques that can find you some relief.
 
This specialist came highly recommended from our PCP considering she dealt with a patient who had a tumour on his brain. He was fast-tracked and had the necessary surgery within 2 days.

I'm sure there must be others in Toronto (a 2 hour drive). I will ask to be referred to one of them. Thanks so much :appl: :wavey:
 
I have congenital spinal stenosis in the lumbar spine that was diagnosed when I was 31. It's very common in people in their 60's and 70's and older, but pretty rare in young people.

I had terrible pain down both legs, a lot of numbness and eventually found walking extremely difficult as it was affecting the muscles in my legs and feet.

In 2004 I had surgery to remove a lot of bone from the vertebrae and also to remove some herniated discs (the two are often related). I was in hospital for 5 days and then needed a good 3 weeks recovery at home.

I got about a 60% increase in function and a 40% reduction in pain which was about as good as could be hoped for according to the surgeons - spinal surgery does not always mean that you will be restored to pre-condition. I was thrilled with the results as I could actually walk again and even stand for a decent amount of time... the week before surgery I had dragged myself to see an exhibition in one of the London museums and I remember being in such pain (despite huge quantities of opiates and oramorph) that I envied the guy going round in the wheelchair.

I had specialist spinal physio for 3 years which was very helpful - mainly learning core stabilising techniques and I now take a cocktail of meds on a daily basis (200mg tramadol, 125mg lamotrigine, and up to 240mg codeine) that keep me functioning pretty normally (I am not allowed to do much in the way of exercise though.

I still have very bad nerve pain in my legs - it has got progressively worse over the years, which I was warned would happen. I also have accupuncture on a regular basis. I've attended a 2 week in-patient chronic pain-management course, seen numerous specialists, had 5 epidurals and injections directly into the nerves in my spine and have tried a few other therapies that aren't too quack-like and I am basically where I am for the next 15-20 years.

More surgery is almost certain, but my neurosurgeon doesn't want to do anything till I am over 50. I was treated at the Royal National Orthopaedic Hospital in London which is one of the best in Europe and my consultant is one of the only spinal neurosurgeons in the UK and I trust him completely, he called in second opinions before we went ahead with surgery (since it was all paid for on the NHS - and was extremely expensive, I know that he was doing it for clinical need not because he wanted to earn some money!)

Unfortunately spinal stenosis is a degenerative condition and so tends to get worse. The good thing about the lumbar spine is that the area involved doesn't have any of the bits that could mean you would be paralyised if they slipped!

Sorry not to be able to give you any particularly positive view here. It is a PITA for definite.
 
HI:

Recently, my colleague's husband (app. 63 years of age) had neurosurgery for the same diagnosis and has had an excellent outcome. He was very active before surgery...and has regained much of his strength and activity level, has no pain, ableit minor tingling/numbness. Hope you find the best solution for your issue.

cheers--Sharon
 
I am very sorry you are dealing with this Isaku. I don't have this, but have terrible pain in my neck and did neck surgery about 6 years ago. Get a second opinion, and if you do surgery.. Make sure to go with one that does a lot of them. Here many are not wanting to do the neck.


Sending you a gentle hug, and will keep you in my prayers. I have missed you. Have had a full plate as they say. xoxox :wavey:

Lisa
 
Thank you so much Pandora, canuk-gal and Kaleigh :wavey:

It's great to hear about the positive outcomes as well as those that are more complicated.

As well as the spinal stenosis, I have two herniated disks and a degenerating spine. That's all I remember. I think I blocked any other info.

I initially went to an acupuncturist to try to get rid of the pain caused by scar tissue on my left hip (both hip joints have been replaced) as he had practically eliminated the same problem in my right hip. Both are great right now. At one point, he thought that I had neuropathy as well. Now that was a painful treatment!!! I was ready to tear all of those needles out of my right leg in a flash. The leg was on fire! I went through a period where I had very little to no feeling from my right foot gradually moving toward my knee. It made walking almost impossible. After 8 acupuncture sessions, the feeling is back to almost normal. What a relief!

Just when things were looking up, vertigo set in as well as a problem with judging distance and depth (from a sidewalk). I had many falls due to that. Now, I've decided that I'm not going for any more medial treatments/appointments with the exception of acupuncture.

There comes a time when you've had enough of going here and there and all your outings are related to medical appointments. That's where quality of life has gone far enough down the drain.

Sorry for the long post. I'm feeling totally frustrated tonight.
 
My sister's MIL had surgery to correct lower lumbar spinal stenosis about 5 years ago. After the surgery she had to wear a brace around her mid section and had about 8 weeks of physical therapy - 3 of which when she went to rehab and 5 as out patient. She cannot tell you for certain whether the surgery helped or not. She still had pain for which the doctor then inserted some sort of pump in which she would press a button to administer a pain killer. I know lately that has not worked well and she wears narcotic pain patches on her back. But much of this could also be attibuted to her age (she is in her 80s). She had the surgery I believe when she was 77. The rehab was hard on her, and in the end she is no better than she was before.

I would surely recommend looking into alternate therapies before committing to surgery as a last resort.
 
isaku5|1335064821|3177569 said:
As well as the spinal stenosis, I have two herniated disks and a degenerating spine.
Click to expand...

I had this diagnosis as well at age 20... only I had more herniated discs.

I did three years of physical therapy. Way too many pain killers, muscle relaxants, steroids, etc. Finally went to a doctor who, like I, thought this was a ridiculous state to be in as an early-twenty year old. I wasn't getting any better and wasn't managing my pain well either. I went through with surgery to widen the canal, remove bone fragments and two of my discs in the lumbar area. I have more issues up higher in the thoracic area but I opted not to cut on them yet. I know I will need future surgery.

Surgery was amazing for me. I woke with NO pain compared to the rather excruciating pain I'd had for years, and I had more feeling in my legs and feet than what I'd had in a while. I have remained "relatively" extreme pain free though I ache constantly and have this hard to explain dull nerve-like pain in my legs all the time.
 
Thanks soocool and MissPrudential for sharing your stories. Every little bit of info is helpful to me. I didn't even know what Spinal Stenosis really was and remember hearing about a 96 year old lady who was being treated for it. Naturally, jumping to conclusions, I presumed that such a diagnosis would be given only to very elderly patients. How naive I was! I've had symptoms for years, told our PCP at every visit, and got no response until last year when he recommended a neurologist. Again, no specific diagnosis was given, but she did suggest strongly that she could 'help' me; however, given her less than stellar practices, I'm not so sure that when it's time for surgery, she's the one I'd trust.
 
I'm sorry you're going through this. Best of luck - I hope the doctors find something helpful that does not require surgery.
 
Thanks, Madam Bijoux, for the well wishes. :wavey:

I actually got my hands on the neurologist's report today - not that it did a lot of good. The language used was so full of medical-eze, it was like a foreign language. Today was my weekly appointment with my acupuncturist and he tried to explain some of it to me. It sounded as if he would be looking after me until the surgery takes place somewhere in the future. He has seen a few of these reports, but none were quite as 'serious' as mine. Great! At least I excel at something.

As long as he can keep the pain at bay, I'll be there. It's not all bad as he is a feast for the eyes. Pure eye candy with brains!!! What a combo :love:
 
Isaku- I have the same. A couple herniated discs and stenosis. I've had physical therapy, injections and bouts of painkillers. The injections helped a lot, but it's been several years and I think I may need more. I had one accupuncture treatment and will try more.

One thing I'm convinced has helped is walking. I do 3.5 miles per day about 6 days per week. I built up to it slowly. Some days my back is really aching when I start, but it always loosens up by the end. Hang in there!
 
Thanks for the advice, lulu - 3.5miles a day for 6 days??!!! :appl:

I have balance/vertigo issues which may or may not be contributing to the stenosis or vice versa. That being the case, I can't walk alone. My DH is my walking partner. As we're walking, my brain tells me to sit down before I fall down. I've tried ignoring that advice and sure enough I teeter and then go down gradually. I give myself a little time to recover before trying again and so it goes.

If there's a shopping cart available in any store, I grab it and use it for stability as I attempt to shop. Sometimes it works well and on other occasions I've had to abandon the cart and try to get to the car as quickly as possible.

Why can't large stores have a couple of places to sit and rest??

I should add here that I'm also dealing with Chronic Fatigue and Fibro.

A fellow patient described the 'action' going on with my body as a version of The Perfect Storm movie. I'd have to agree.
 
I recently tried to run for weight loss, and it was working. Unfortunately my back went into spasm and I was out of it and on norflex for a week. I don't recommend that!
 
lulu|1335322666|3179973 said:
I recently tried to run for weight loss, and it was working. Unfortunately my back went into spasm and I was out of it and on norflex for a week. I don't recommend that!
Click to expand...

Funny you say that because the first appt with my neurosurgeon AND my neurologist they ask if if run. I say no. They BOTH say (generally), "good, you'll never be one and don't try to be. You will slaughter your back."

They discouraged elliptical because it isn't true no-impact, and said stick to walking (focus on form though), swimming, and biking.
 
FH was diagnosed with spinal stenosis and degenerative disc disease a couple years ago. He is good with his rehab/PT and he has gone through periods where he is fine for months, but he has a really physical job and he loves playing handball/raquetball with the guys and he has injured himself twice in the last year.

He has had 3 opinions from orthopedists and neurosurgeons, and 2 MRIs in the past month, and 2 of 3 doctors have suggested surgery--one wants to widen the spinal canal, the other wants to do a disc repair. He really doesn't want surgery, so he started taking Gabapentin this week (for his sciatica, nerve pain and numbness), and he had an epidural today. Not really sure the outcome of that yet--he was sedated and has been really sleepy and kind of out of it all day.

Haven--I will have him look into MAT--that sounds like its right up is alley!

My dad had surgery last year for his spinal stenosis. It got so bad that he was having trouble with dorsiflexion of his foot, which made walking/exercising difficult. He is happy with the results of the surgery and is doing much better now. He feels better, more mobile and has gotten into pilates to strengthen his core and stabilize his back and he loves it!

I'm sorry that you're going through this. Back pain is awful, and so frustrating and scary! Try to stay positive and explore your options--you will find what's best for you, just don't let a doctor talk you into surgery if you don't feel right about it.
 
Haven, I too will definitely take your advice and look into MAT as well as continuing my acupuncture :appl: :wavey:
 
I'm sorry to hear that so many are suffering from spinal stenosis.
I hope that everyone can find some relief very soon!
 
Haven|1335369162|3180336 said:
I'm sorry to hear that so many are suffering from spinal stenosis.
I hope that everyone can find some relief very soon!
Click to expand...

I looked up some info on MAT last night after reading this and had FH do some research today--he has a consultation tomorrow, fingers crossed!!! The only downside is that it's $150-$250 per session and ins will only cover $50 at most. Crazy that they will cover thousands of dollars in surgery and medications, but they won't cover this. And he has really good insurance. Just seems stupid!!!
 
I hope it works for him, Tuffy! The thing with MAT is that it's a process, so it definitely isn't a quick fix. It is pretty amazing, though, the results my husband has gotten on his own body. (And of course what he sees for his clients.)

I just told DH that I shared info about MAT here on PS, and he wanted me to recommend that you find a master level specialist. Here's a link to the master levels: http://muscleactivation.com/contact-lists/master_level.html

It is unfortunate that insurance won't cover MAT. Where are you located, if you don't mind sharing. DH said he'd be happy to recommend some specialists, he knows most of the practitioners, especially the masters.
 
That would be wonderful! We are in the Beach Cities area of Los Angeles.

FH found a couple people that do 'ART', not MAT. Do you know if ART is as good as MAT? His consultation tomorrow is with an ART practitioner in Long Beach, CA.

He understands that his rehab will be ongoing. He does PT now, and he is really good about keeping it up and doing his exercises outside of the PT's office. He really wants to find a non-surgical solution that will bring him relief and allow him to do the things he enjoys. If he found something like that he would happily keep it up! If he is a good candidate, this seems like a perfect option for him!!
 
I am so sorry to hear this honey. I don't know anything about it, but just wanted to give you my love and a huge ((HUG)). I hope at least knowing what the problem is makes effective treatment possible so you get some relief. Lots of dust to you sweetie.
 
tuffyluvr|1335413952|3181179 said:
That would be wonderful! We are in the Beach Cities area of Los Angeles.

FH found a couple people that do 'ART', not MAT. Do you know if ART is as good as MAT? His consultation tomorrow is with an ART practitioner in Long Beach, CA.

He understands that his rehab will be ongoing. He does PT now, and he is really good about keeping it up and doing his exercises outside of the PT's office. He really wants to find a non-surgical solution that will bring him relief and allow him to do the things he enjoys. If he found something like that he would happily keep it up! If he is a good candidate, this seems like a perfect option for him!!
Click to expand...
I really hope the ART works for him!

My husband can't say if ART is as good as MAT because they are just very different techniques. (Of course, I know DH believes that MAT is the most effective and sound approach, which is why he's made a career of doing it!) But that doesn't mean ART won't work better for your husband. People find relief in every modality that exists out there, so here's hoping ART is what he needs.

I know the one thing my husband would tell your FI is that he only got better once he stopped doing all of the physical activities he loved that exacerbated his symptoms. It wasn't easy, and I know a lot of his clients struggle with making major lifestyle changes, but it's worth it to protect your body now and let it heal so he can enjoy these things again in the future. DH took a long break from bicycling and volleyball, and it really did affect him emotionally at times. (He had been doing regular duathlons at the time.) But now he's years and years past his diagnosis and he can enjoy all of those things again. In moderation, of course, but he'd rather be a physically active and healthy 42 year-old, and 52-year old, etc. etc. than not.

I really hope everyone with spinal stenosis finds something that works for them. I know how debilitating it can be, physically and emotionally, so my heart goes out to all of you. It really does. I live with a man who changed his entire career path because he found something that kept him well, so I know how life-changing this can be. My DH actually flies out to Denver several times a year to get treatments from Greg Roskopf, the founder of MAT, because that is how much it helps hims. I hope you can all find YOUR solution!

ETA: Tuffy, DH just responded and recommends you contact Jacques Taylor if your DF is interested in MAT. Jacques is a master level practitioner, as well as an MAT instructor. You can find his contact info here: http://www.muscleactivation.com/contact-lists/master_level.html
 
Thanks Haven!! He left a mssg for Jacques, and is awaiting a call back :)
 
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