Spinal stenosis

Hi Jennifer, I had all this and a neurosurgeon did a decompression and put in a spacer. The pain for a year was awfull then it got worse! For the last 6 months I have been almost incohearant in the first 15 mins of the day, then with the the help of a packet of frozen peas down my knickers things improve. During the rest of the day I just have grinding pain that Gabapenton takes the edge off.

I have been a very active person, I was a competitive ice skater (lots of dramatic falls), then for the last 40 years I have been a dance exercise teacher and a serious hill walker. No wonder I have a knackered lumber spine.

18 Months ago I could do all this, all be it inpain, now I have had to give up most of my teaching, at an advanced level anyway, and can no longer climb hills. My friends are moutaineers so I am loosing touch with them and I am trying not to be depressed.

I can still walk for some time, I just force throughthe pain, ditto the exercise teaching.

But last week I found something that surprised me. Although I am not much over weight I tried to diet loosing 10.5 lbs (over 5 weeks) and things improved. I am trying to go down another stone, (bloody hard), to see if this helps more.

My advice to eveyone DON'T HAVE AN OPERATION till you have to. I was much better before.

Good luck from Scotland

Sorry to hear about this. The problem is knowing when to have an operation isn't it. A man on an american site I've been to said don't have surgery til you are p*ssing yourself (he says he has been advised to have surgery for years but never has), and the consultant I saw when I quoted this said by then it's too late.  Can I ask what your exact diagnosis was and what your consultant predicted?

Hi Rob, my diagnosis was a prolapsed vertibra, no 5, with a bulging disc, two fractures in the vertibra and a loose bit of bone down the spinal canal.There was only a 4mm gap so I had to have th eop or would have been incontinent and paralised. The surgeon said I can sort this and put in a spacer but can't fix your arthritis. Before I coukd climb hills for 4 hours and teach advanced dance exercise albeit with pretty dramatic pain after!! However now I am much reduced in what I can achieve and have almost constant pain... but I am not in continent or paralised. If you are thinking of having one make sure you have no more options. It is terribly painful. Good luck.

 

Very kind of you to reply so quickly and fully. Yes, I can see things  needed attention, especially the rogue bit of bone and I guess you had no alternative, as you say, but to go for the op to prevent worse. God bless frozen peas, I hear you say, and losing weight helps.  In me, getting my diagnosis (stenosis) just led to a quiet depression and eating, but now I am in a better mood and able to shed a few oz, and it does help the poor old spine a lot, as you say.  Enjoy tonight and all the best for 2015!  Rob777

Hi, everyone here has such pressing issues.  7 months ago I felt much more on top of things, yet with major depression and PTSD on my back I had enough on my plate as it was I thought.  Then I suffered a fall after losing my balance (a side effect of being on Mirtazapine early on).  I fell backwards with my hands out.  Before my fall I would take a trolley across town on public transport if necessary to pick up free stuff and furniture people were giving away for free.  I felt more in control, and I was certainly finding the workout such a journey gave me physically challenging and thus helped improve my strength and fitness.  Now I am in pain walking down the street.  I will tell you how it begun.

I fell in the morning, and as was sometimes the case, I got up again and felt lucky that I got off scott free from injury.  All day I was just fine until I had forgotten all about my fall.  Then as I was lying in bed that night I suddenly felt a stinging pain up my right ankle, it was excrutiating and lingered for 20 minutes until I finally got comfortable and fell asleep.  In the morning the side of my foot was inflamed and I had to hobble around for a few days trying not to go out anywhere.  By the end of those 3 days  a new symptom started.  It was a strange slightly painfal grab and release feeling at the top of my left thigh, very disconcerting.  I remember standing at the counter at the dentists office and if I even slightly turned my body to Right of centre the tendon or whatever it was would suddenly "snap" into a new position like a catch and release feeling.  Two days after that a seriously painful spasm started occurring deep in the left and lower buttock, with radiating pain from Left Lower buttock to Right Hip.  It steadily got worse and worse, and in the middle of all this my landlord decided there was to be a house inspection and although I was able to pay someone to move the furniture up and away from the floor to clean the carpets, they left without putting everything back again and I have not been able to move much since.  All of the furniture I had picked up for free is still there and I fully intended to get rid of it again but am stuck looking like I am a hoarder, which in essence I guess I might be.  If I try to do even a little, the spasm comes back even worse and I am useless for a few days until it calms down.  I am not taking real anti-imflammatory medication, only Mirtazapine which is possibly helping a little with that but is really for PTSD and depression.  If I tempt it and try to do too much, then it gets so bad that if for some reason I need to pick something up off the floor, I get halfway then cannot stop myself going down on one knee, losing strength in my left leg.  Once the spasm stops after about 10-15 seconds I can usually get back up again.  I hate using a dustpan and brush down near the floor.  The housework therefore is way behind and staying that way for now.  Recently I was called in to complete an MRI as part of a study in Knee and lower back pain  (when I first enrolled I was to be a control)  I wasn't able to find out what the results were, even though I asked.  Instead I was sent by my doctor for a back xray (although my doctor remained convinced there was nothing wrong) and as he was away for the last 2 weeks, yesterday I went to see a different doctor at the same place.  He told me the results showed marked arthritic deterioration at certain places in my spine and especially in the lumbar region with obvious pressure on discs which would account for my pain, but no fracture.  Finally, on a day when I wasn't coping so well, I at least had a real reason for why all of my attempts at exercise had failed to improve my condition.

I was desperate enough to want to ask for a botulinum injection, wondering if it would help my spasms, but I completely forgot to do that in the end.  Anyway, I really do appreciate the information everyone here has talked about.  I am very interested in the Transdermal Patches and I have bad reactions to strong codeine which made me dizzy for weeks after an operation years ago, but was the only thing that took the edge off the 2hrs per day exhausting pain I experienced for 5 weeks following my surgery.   As my weight has ballooned as a side effect of my current meds, I tried to access a weightloss clinic which also incorporated research staff in Heart and Diabetes clinics, but when I rang back to find out if and how much they charged per visit today, they said they couldn't find my appointment anywhere on their system.  So I checked out their links to local hospitals and found a Women's Specialist clinic that bulk bills and also has a weightloss aspect I can link into.  As I get so much pain now, and because I am more than 12kgs overweight, it has made dealing with my pain that much harder.  I had to go back to my doctor today to get the referral and ring tomorrow to make sure the fax went through.   I will have to ask the hard questions very soon, because if medication will make my life more bearable and me more employable I will have to consider it.  My current meds make me a bit somnolent as well, so I don't like to drive.   It is wintery here right now and I even my neck and shoulders are stiff today. My knees are also painful at the moment, they get tight and are sore when I flex them by going down and up stairs, or just get up out of a chair.   One habit I have picked up has not worked in my favour.  Last winter my fuel bill (because I was so unwell) rose to be $800 during winter.  This year, in order ot keep the electricity bill down I lie on the sofa with an electric blanket underneath me and a doona on top.  While this has been better for the energy bills, it has proven to be terrible for my mobility.  I end up in a hunched up position for hours on end, and it has to stop.  Finally, I think this is important, I had a friend die 2 weeks ago, who was suffering from Rheumatoid arthritis and for the last 5 years had warned her children that she could die soon, as her doctors had told her that her organs were being affected and she was always catching colds and getting fevers or sore throats and coughs.  Her back pain was eventually off the charts and her weight had ballooned a while back as well.   She died at 55 and I didn't find out until the day after her funeral.  I still do not know the exact cause of her death, and I really hope it wasn't suicide, but I know she was really suffering.  It was isolating for her.  Now that I am starting to suffer a bit more than before, I don't want to end life early through not managing it, and I think I have a chance now to reassess my diet, ask for help from dieticians and get help to become eventually more in control of my life.  Most people don't think they will end up like this, but I am not getting any younger and I have to make the most of my opportunities to improve my quality of life.   As for believing everything the doctors tell me.  I think most of us can tell when doctors are snowed under and not paying attention.  I'm glad my regular doctor took a holiday to the snow, so that his partner at the clinic might fill me in with the truth about my condition.  Something I was being blamed for as being just a lack of exercise according to my doctor, was quite a different thing in the hands of a sane and competent medical professional with sense.

Hi, I wonder why it is your surgeon was pessimistic? My own (I plan to have the op in May) said there is an 85% chance of success, some risks of course, but there always are, and there could be no change.  I take pregabalin and amitryptiline for relief, which are good, though not beyond the sort of radius you allude to.

As for exercise, spinal stenosis sufferers can cycle, usually, as you can bend slightly, and I have invested in a rowing machine (I miss it badly, I am currently away from home and getting fat; the good machines are really heavy and you can't just take it with it) but as one sits to it, it can be done and is a fine exercise for a lot of body parts, including core and back strengthening.

Thanks for the post Rob.

I think it depends upon where the stenosis is, its nature and of course the surgeon.

In my case I was not offered very good odds at all, so I elected not to go ahead with the operation.

Strangely I remember after the consultation the surgeon saying to me that in my case it was, in his opinion the correct decision.

After a while the pain became unbearable and I had great difficulty in walking any distance at all, so I was prescribed Gabapentin which disagreed with me, following which I was prescribed Pregabalin which had the same effect, so I dropped both of them and decided to try and cope with the pain.

Quite by chance I found that Naproxin worked, as I have another musculoskeletal injury for which this drug had been prescribed, and every time I took it I noticed that the pain in my legs and back did not completely disappear, but was certainly a bit easier.

One tablet gave me about 2 days relief.

So basically that is how I have had to come to terms with this 

degenerative and unpleasnt condition.

In the last year I was diagnosed with Diabetes type 2 and prescribed Linagliptin ( as I was also suffering from Pernicious Anaemia I cannot take Metformin), and noticed that I have been putting on weight.

As walking any distance is still very much off the agenda, I have been investigating other forms of excercise.

Had I not got rid of both my rowing and cycling machines some years ago I could well have turned to them, however as  I have decided not to reinvest in that type of equipment again I have elected to join a gym, where I can be supervised on any suitable equipment they have, and of course there is always swimming.

This getting old business does not sit at all well with me, but my shoulders are broad enough to take it - I think, and anyway I have already got a brand new and unused mobility scooter ready and waiting for me in the garage.

The only problem is that my ego will never ever allow me to use it.

Yes, Archie (!), One has to trust one's consultant; I've found the internet quite confusing and of course people who've had failed surgery are more likely to be looking for support than not, so you don't quite know where to look for unbiassed opinion. As you say, the individual problem, location, severity etc. will all factor into what the medics recommend.

I've done the gabapentin like you and am now on pregabalin and amitryptiline; for me they started well and I was grateful but with the passage of time my guts have started playing up, so I don't think I could go on indefinitely, so am glad the med advice was to go for surgery (I have lumbar stenosis at 2 levels, I believe). You're fortunate to have found pain relief by accident.

You're lucky too if you are a swimmer and near a pool as that will keep things going well; I find decompression easier in the water, but since I got my rower I've been to the gym much less: being on the nocturnal side, I like being able to exercise during unsocial hours, as it were, and I use my bike as a kind of walking frame - I find that leaning on the handlebars, just like with a shopping trolley, you can bend slightly and this makes walking a possibility.

I like the idea of keeping your scooter in the garage, problem is I don't have one!!  All the best, Rob

Don't have a garage, sorry can't help?

Don't have a brand new waste-of money unused raring-to-go scooter?

I might have sold you mine, but I use it purely as a threat of something worse to come, similar to the old Austin Marina that Top Gear uses in the event that one of the three amigos cars breaks down on a long haul.

Nobody wants to have a terminal breakdown just in case they have to drive it.

Same here...............

Hi Rob, now you have got me thinking of getting an exercise bike,second hand of course but this stenosis is a right bugger with the symptoms for ever changing.  Very different from the lower back pain i managed with gels and co-codamol for years, gabapentin was useless so i am now experimenting with pregabalin 300 mg one or two a  day depending how i feel, a regular daily 600 mg dose left me stunned and nasty side effects.I was told the best they could do would be to scrape the thickened bone to give the spinal cord more room but would be little relief at best, so sod the surgery in my case. Is anyone with spinal stenosis ( and i recognize where you have it can make a difference) able to use a exercise machine. Well all the best to all fellow sufferers.

Hi Frank, if you are thinking of buying some form of exercise machine my advice would be to try some first to establish if it will benefit you or cause more problems,

The decent ones don't come cheap, and it could be a waste of money if you find they are unsuitable.

I sold both my machines because in my case they didn't give me much relief, but the same might not be true for you.

Best of luck

Rod

Hi Rod sorry for the delay answering but just got the posting. Thanks for the advice i am really keen on any comments from fellow spinal stenosis sufferers, it affects me from the waist down and yes that means erectile dysfunction as well.  I could become a priest or something similar i gues All the best mate.

Hello again Frank, having a spinal stenosis is a real bugger, but the only way is forwards. Never ever give into it Frank, and by the way try Cialis for the ED, it does work for many men.

All the best

Rod

Hi Rod, well its a bright sunny morning and like you say onward & upward.  Thanks for the tip on ED though,mind you at 75 im not obsessed by this, i hope. Cheers. Frank.

Ditto Frank, I'm 71 in a couple of days so I understand where you are coming from, or not as the case may be.

Take care

Regards

Rod

PS Frank, have you tried Naproxen for the back, it takes the edge off the pain in my case?

Just a thought.