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Spinal stenosis

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Diorbhail
Diorbhail

Had acute pain in right leg for 15 months which Gp was saying was hip and knee osteoarthritis and was prescribed cocodamol and later Tramadol which only took the edge off. Had knee and hip x-rays which showed minimal arthritis. Eventually I insisted on seeing a hip surgeon privately and he not only was the first person to listen to me but actually agreed that it was my spine. At last I was able to get an MRI scan done which confirmed lumbar spinal stenosis. The acute pain has eased now but I'm not able to walk far and have back pain as well as now both legs weak. I'm informed that steroid injection don't last long and surgery may have to be repeated after a couple of years or so. I'm not sure that it is worth the risk and considering to try acupuncture. I know there isn't a cure but some pain relief would be nice.

7 likes, 108 replies

108 Replies

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  • Fanny_Jane
    Fanny_Jane

    Posted

    Hi All, aprilflowers and EileenAnn are absolutley right, keeping positive and not letting age defeat us is the only way to go.

    I had a steroid injection in my wrist a few weeks ago. It had been in a plastercast following a thumb fusion. When the cast came off it was soooo painful. I had a scan and the surgeon said the cast had rubbed away at the tendon and made a small hole in it! He put a steroid injection it it as first resort to more surgery. It was not painful at all and It is so much better I am hoping no more ops.

    Lots of people live with lots of very painful and difficult conditions. We just have to get on with it .I hope that when I'm in my mid eighties I am still as positive as EileenAnn is.

    EileenAnn why don't you join the Athritis Care forum I mentioned in my earlier post. I am a member and really enjoy reading the posts and sometimes putting my twopenneth in. It's not just about arthritis but about living and all sorts of stuff. I am quite isolated due to my problems and have gained new 'virtual' friends that have made me feel less alone. I do not do Facebook or Twitter as it's not really my thing but the Arthritis Care Forum is really friendly and helpful at the same time.

    Well hope all you Spiney's are keeping your chins up today (!). Bless you, Fanny Jane.

  • aprilflowers
    aprilflowers

    Posted

    Thanks. Can you tell us what Transdermol Patches are please?

    I am a huge believer in accupuncture and anyone whatever their age can have this through the NHS, put some pressure on your GP for a referral. Privately it costs from £40 upwards in Edinburgh which is way beyond my means. The other thing I use, especially if it a damp day and my back aches, is heat pads. Brings down the inflammation quickly and brings comfort. The £ shop sells them! otherwise Boots or any chemist. Isn't it marvellous how good you feel when the pain is under control. I hope I manage as well as Eileen Ann when I reach my 80's and I can always be your virtual friend if you wish. I rarely talk about my back to friends or anyone as I feel it must be boring for them. Am waiting to attend the pain clinic and look forward to finding out how to manage pain. A TENS machine also helps. Never give up folks!

    • alpaca2209
      alpaca2209 aprilflowers

      Posted

      aprilflowers - please could you let me know where you have acupuncture in Edinburgh and also any other resources in Edinburgh for physio, pain clinic or specialists. after 3 years being told pain is from polymyalgia then neuropathy  - steroids for polymyalgia induced diabetes which caused neuropathy) I had a private nerve conduction test last week. The consultant says I have pressure on spine which is adding to numbness and creating much of pain. I am waiting for an x ray of spine but would welcome any advice about support. thank you!
  • aprilflowers
    aprilflowers

    Posted

    Thanks. Can you tell us what Transdermol Patches are please?

    I am a huge believer in accupuncture and anyone whatever their age can have this through the NHS, put some pressure on your GP for a referral. Privately it costs from £40 upwards in Edinburgh which is way beyond my means. The other thing I use, especially if it a damp day and my back aches, is heat pads. Brings down the inflammation quickly and brings comfort. The £ shop sells them! otherwise Boots or any chemist. Isn't it marvellous how good you feel when the pain is under control. I hope I manage as well as Eileen Ann when I reach my 80's and I can always be your virtual friend if you wish. I rarely talk about my back to friends or anyone as I feel it must be boring for them. Am waiting to attend the pain clinic and look forward to finding out how to manage pain. A TENS machine also helps. Never give up folks!

  • Fanny_Jane
    Fanny_Jane

    Posted

    Hi aprilflowers, Transdermal patches are patches that you stick on for 3 - 7 days. They are either Butrans - buprenorphine, a form of morphine or Duragesic - Fentanyl. They are very potent but in the lower doses such as 5mcg, can be a really good form of pain control with very few side effects. You can take them off at any time if you just need a few days when going through a bad patch or wear them for years at a time.

    Although they sound scary they are not at all. The way they transmit the medication is very slow release. They bypass the stomach so do not irritate the stomach lining and are better than pills when on a long term pain control programme or by people that have had stomach issues with pills by mouth.

    There is also a patch called Lidocaine. This is the same medication that dentists use. It can be cut and stuck on a particular area for about 12 hours at a time and can give good pain relief for that period.

    Obviously these are a prescription only option via your gp/pain clinic consultant. Like all medication they have their side effects but morphine is actually the safest pain medication to take long term out there, organ wise, unlike paracetamol that can seriously damage a liver when taken long term or in large doses.

    Most people with chronic pain issues use them all the time. I don't. I use them only when in a bad place, pain wise as I like to keep my intake of medications down to a minumum. I find them more acceptable than meds like gabapentin/neurontin/amitryptyline, which personally rob me of my mental faculties.

    Accupuncture is wonderful for many people. It did nothing for me sadly. Also on the NHS in my area you get 6 goes and that's it. Then you have to go back to the end of the queue. This means that most people get one/two goes a year as the waiting list is so long.My husband found it helpful but needed it to go on every week for a long time to bring him any real relief. We are also not in a position to go privately.

    I also agree with you that heat is the best thing for a painful spine although some people do actually prefer cold/ice (brrr!) applied. I have a plug in heat pad that I cling to most of these cold, damp days.

    I have used a tens machine since they came out about 25 years ago. My consultant got me one at the time with the vat knocked off. I use one still from time to time and believe that alternative methods are always worth a go, if they suit you then that's great.I have even tried hypnotherapy for pain control. I used a well known hypnotherapist in my area recommended by my gp.It was a good experience for me. Although I still have pain issues I am able to deal with it all better. I was a complete insomniac due to the pain, after the hypnotherapy, in which he taught me a technique to get to sleep, I have been able to sleep for 4/5 hours at a time and feel so much better for it.He also taught me how to relax properly and accept my pain, in this way it seems more manageable than before.

    My post may have sounded like I was plugging pills. I really wasn't, just listing what is available out there for people in pain.

    I don't know what your pain clinic is like but ours is a bit limited if you are looking for long term care. Basically they give out amitryptyline/gabapentin/neurontin/codeine. A few steroid injections if you are lucky, accupuncture 1/2 times, offer you a possible 6/8 month wait for Cognitive Behaviour Therapy or psychiatrist appointment and then tell you there's nothing else they can do.They are usually run by anaesthetists and psychiatrists.

    I did get an MRI scan when I originally went which I was grateful for, as it did pinpoint more issues than I or they realised I had, which was very helpful. They can also refer you to an orthopaedic consultant if they feel an operation may be required. However once you've been through a couple of appointments they run out of steam as they have nothing else to offer.I believe some areas offer a workshop in living with/dealing with chronic pain.

    And yes.. it's wonderful when the pain is under control, or even just bearable. I don't know about you but it is a big part of my life and I never, ever talk about it to anyone if I can help it. I am always worried that 'normal' people will think I'm moaning or a grump and put up with a lot rather than mention it.

    Well it's been lovely talking to you. Lots of luck when you visit the pain clinic and fingers (ouch!) crossed that you get some positive ideas and help in dealing with your pain.I always think that being knowledgable about a problem helps a lot. Take care of yourself. Fanny Jane.

  • aprilflowers
    aprilflowers

    Posted

    Thank you for explaining the patches, very interesting and I will ask my GP about them. They must be more healthier than Ibuprofen which ruins the stomach when taken for long periods. Your post was very informative, many thanks.
  • Fanny_Jane
    Fanny_Jane

    Posted

    Thank you aprilflowers, Its a pleasure. I'm sure your gp will explain it all to you in more medical terms. Anything is worth a go. FJ.
  • larry_76510
    larry_76510

    Posted

    I was recently diagnosed with spinal stenosis and am due to schedule surgery on Tuesday, March18,2014. I must admit that I am scared beyond words. Right now the pain is no longer in my back, but throughout my left leg. I have no muscle control of the left leg and am unable to walk. I have fallen over 100 times within the last month so now I am confined to a wheelchair. Has anybody experienced anything similar and did surgery allow you to regain use of your limb(s) again?
    • j.79275
      j.79275 larry_76510

      Posted

      Hi Larry,

      I guess you`ve had your surgury by now, I hope all went as planned and all is going well for you..I am writing you to give you some info on myself. I am a 50 year old man that ruined my back working in 1989...I fought having surgery 15 or16 years, I was scared.. I have to this day had 2 operations and appr.30  different types of injections to say the least.. The injections work sometimes sometimes not..I was like you i was in a wheel chair before my first operation in 2004 ,then thank god i was able to walk again.. To make a long story short, i am thankful to be walking but once you mess that back up regardless of your type of surgeon you sadly will always have problems . Now thats my take. On my first op. i ended up flat on my back for 6 months from contracting ecoli & staph infection which they cleared up with a pick line for home use with strong antibiotics. To this second i am fighting both legs and lower back pain.. I hope you didn`t contract a infection from your procedure. The actual surgery was a cake walk to me, other folks say its terrible. Both surgery`s was as i stated simple , but the infection was a nightmare.. The inf. didn`t take place bad and really get flairing until about a month afterwards.. I hope you can and are willing to take pain meds like percocet/oxycotin/morphine.. I can`t take the neurotine, lyrica type meds, they make me extremely sick, i`ve had them all at one time or the other throughout the years...

      I can give you more info, but i honestly don`t want to scare a person off from a surgery if they need it.

      I didn`t have a choice as you on having to be cut.

      Sitting like on a plane, car, desk or standing, walking ect.. kills me right now, i have to lie down flat for relief !

      Take care of yourself, don`t lift heavy stuff for a while or twist, becareful, but be as active as you feel comfortable.. Good Luck in the now and future, remember, your for sure not by yourself.. We all on this forum and abroad feel your pain!!!!!!!!

       

    • j.79275
      j.79275 larry_76510

      Posted

      Larry,

      I`m new on this site, I believe I am really on the wrong discussion thread.

      But when I read your situation I had to give you a shout!!

       

    • ron02907
      ron02907 larry_76510

      Posted

      I have spinal stenosis and it affects me as you say my left leg goes to sleep if I stand for a short time, and I have to get to a chair.Both legs pain and it seems worse when I get up from a chair untill I move a bit. My Dr. said he has seen them come out of the operation worse than when they went in so I dont think I will try that. They advertise laser operation in the US where you go in and after a small incision you go home that afternoon ,dont we have Drs. in canada that can do that? I called about the operation and the price was $20,000 US.  The best pill I have found is Volteran I get through the day with alot less pain. I am 87 and I played slow pitch SR soft ball untill I was 85 and my legs gave out, so I cant complain about a bit of pain.
  • EileenAnn
    EileenAnn

    Posted

    Sorry to hear what is happening to you Larry. I have not had surgery I started a course of Pregabalin and it seems to have taken a lot of the pain away. I can still walk but I cannot stand for long so don't got out unless I am with someone. Just a few minutes of sitting and I can walk again. I've now got elbow crutches to use outdoors. I have a weird feeling in my right foot and side of leg but I just keep massaging it with various creams and gels. spinal stenosis doesn't seem to have a set pattern and I haven't heard of anyone exactly like me. I wish you all the best for the 18th March.

    • frank24438
      frank24438 EileenAnn

      Posted

      Your so right about spinal stenosis not having a set pattern.EileenAnn, unlike the lumbar pain that used to be my main problem(orthopedic) Since having a MRI scan for very different symptoms than used to and diagnosed as having spinal stenosis, the pain being neuropathic and shifting about, my GP has tried to help with various tabs and potency and i seem to get the best result off Pregabalin 300 mg taken once or twice a day with a break of a few days, not as recommended but the hell with that if it quitens the symptoms.  As a carer for a vulnerable person i need to retain my mobility.  All the best Lady.
  • Jane_Elen
    Jane_Elen

    Posted

    Oh my Larry! You are much worse than I am, I just joined tonight and trying to find out about using pain patches and I believe I will!!! I have had 2 MRI's thru the years. I have some bulging discs and spinal stenosis. I can get up and around some but back into the lift chair after just a bit. I have had the steroid injections and the Radio Frequency Facet Neurotomy. NO HELP. But for some folks I guess it works well. My GP tells me noto have surgery until no other alternative, I am 82 so I will abide by that. I do hope you have good medical care and get some help. I will go read some more and see what I can glean from this forum. No doubt I

    Will be back!!,

    • Somerset_John
      Somerset_John Jane_Elen

      Posted

      Hi I'm new here.  Larry if you are about how did the surgery go.  I have has spinal problems for about 3-4 years.   Rapidly getting worse.  Two MRI's have shown Lateral recess spinal stenosis throughout the lumbar region with central core stenosis  at L4-S1.  Disc degeneration and misalignment, spinal arthritis  and spinal bone growth.   I am now disabled can only walk a few paces with support, use a power chair when out, stair lift at home.  I am on 3000 mg Gabapentin per day which helps a bit but pain relief needas to be sorted.  I cannot believe how much worse I have got over the past year particularly.  I wonder how much worse it is going to get.  One of the consultants I have sen said @with all that is wrong wityh your back whatever you do stay away fgrom the guys with the sharp knives.  I am 74 rs old..
    • Rob777
      Rob777 Somerset_John

      Posted

      Hello spinal sufferers.  I found this thread by googling 'lumbar stenosis tens', and it's good to find a mostly uk group. Too often I've seemed to get american threads and their problems are totally of a different order, what with their insurance difficulties etc.  Having said that, I have found this site extremely hard to negotiate and to find this small thread again.  It's a huge site, and only by re-googling was I able to get back.  The site's pwm search box didn't do it for me.  I wonder how many others are wandering around looking for support from people with similar issues?

      Anyway, it's specially good to find sufferers with similar problems.  I've got spinal stenosis and general wear and tear of the back.  I am 65.  Male.  This problem started small some years ago, was it 5,6, or 7 years.  Can't remember.  And like Somerset John my problems have sped up over the past year, so much so that I had to get a diagnosis and some help - at the moment gabapentin/amitriptiline and an appt with orthopaedic surgeon in a few weeks.  (The English NHS is wonderful in so many ways, even if it's slooooow, but you know your doctor isn't driven by perverse incentives, as can be in the US.)

      Like S John I wonder where I'll end up. Disabled in a chair?  For now my days are better thanks to drugs, I can move about the house mostly pain free and have got back to diy projects that have lain fallow for yonks, and as for walking I can do a bit, and am grateful for supermarket wheelie baskets.  I can get to the gym but at the moment am scared to try the bike.  For all I can cope with the day, my nights are bloody nasty, getting up two, three, four times to limber up, climb some stairs, heat some milk, snack, sit upright at the pc, and this does the trick eventually and I can get back to bed.  I am writing this during a UK 'scorcher' of a few days in July and this heaps on the agony as nights are on the torrid side. Thanks to the nocturnal problems I am around my bed for half the day.  Ridiculous, but there we are.

      I don't have much faith in any of the treatments on offer and know that adaptation is the most important thing.  This is an area of medicine - the spinal bones, cord and nerves -  where medicine is still very poor, even if it's come a long way in the past years.  MRI is a wonderful way of getting at the reality, and antidepressants/antiepileptics serendipitously give support, but nothing really transforms one's life.  So it's good to find this thread, as hearing of others' problems and some advice is particularly beneficial, and Thank you for that.

      It's really buggered up all my plans for my future though.  It's depressing and frightening and annoying and all that.  And it means I am disabled.  Goodness me, I didn't see this coming at all. Before I get into a rant, I will sign off and intend to return here and find more support.  Cheers, Rob.

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Oh,how i can identify with all that!!...I'm at the end of my tether and I am going to pay £200 tomorrow to see a pain management specialist privately.I've been to two chiropractors,three physiotherapists but absolutely NO DIFFERENCE..One of the chiropractors said he would resign if he didn't CURE me!All the disappointment doesn't help..Each time I get my hopes up and put my trust in a newperson or method and then nothing. My problemis that I move about a lot so haven't got on any proper route to getting help.So now I've had an MRI abroad,the orthopaedic surgeon who saw it said to se a neurosurgeon....I saw one 4 weeks ago at Salford Royal but he recommended conservative management and referral to the pain clinic..My surgerytook 2 weeks to send that referral and the appt. came through for Sept 10th.I CANNOT go on any longer so I want to pay for  someone to REALLY listen and hopefully come up with some help...I want to ask about the gel injections and that bed they stretch your spine on.I don't drive  and I am 68..my parents lived to 90+...I cannot imagine living like this for maybe 20 more painful years.I was so glad to see the word 'rant'!!!  I live on my  own so I can happily(?) rant and moan and swear all day and night!!!
    • Rob777
      Rob777 jennifer1946

      Posted

      Hello, and thanks for the comment!  I'm wondering what exactly your problem is, as I don't think you say you have had an actual diagnosis. (As a chiropractor said he guaranteed a cure I don't think you can have spinal stenosis.) I found your comment that your problem is that you move about alot so haven't got on any proper route for getting help, and you mention Greece, both interesting.  I wonder if you're like me and like travelling and are trying to mix the two, travelling and getting treatment.  I've decided the importance of getting this straight demands I stay in one place and go through the (frustratingly slow, as you say) process of diagnosis and consulting the right people to understand the problem, try the treatments offered etc is the only route to sanity. 

      Was the pain management specialist helpful?  Rob

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello Rob.Yes he guessed'L4 and L5 justw hen I described the symptoms and verified it on the MRI.It's only mild and he says I am a good candidate for the lumbar epidural..He was very sweet and tried to dissuade me from paying for it,saying he could arrange for Choose and Book and I could get it done for free in 6 weeks' time.But I'm having both my toes operated on on Aug 13th and  I know I will be in pai afterwards so I don't want to have to cope with the sciatica as well.He advised me to keep th Sept 10 appt at the hospital since it wil be a first appt and the injection would be about 12 weeks later,by which time I may need a topup..So..I am going on Tuesday for the injection at a cost of£570,which I really can't afford but I have to get some relief before this other thing.I don't drive so my back,legs and feet are worn out poor things...they have walked thousands of miles!!The dr said I may find no relief atall (rare) to up to sixmonths  and even a possibility of permanent relief,which I daren't hope for but that would be a miracle i think. I'm sending this because my laptop is super sensitive and whenI BREATHE my emails disappear but I will follow later with my tale of two cities and the search for relief from this pain...no doubt we all have similar stories to tell!!
    • Rob777
      Rob777 jennifer1946

      Posted

      Well it sounds like you are on the road to a proper diagnosis and appropriate treatment, which is what you need - as you said it's disappointing to see inappropriate professionals, physios and chiros, who promise help but how can they if the problem is beyond their field; I hope the injection will give relief.  I envy you having a mild problem and am gobsmacked that you can walk so much, and you don't drive!  I guess by now you'll have had the needle.  How did it go? Rob
    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello again Rob.Yes,I had the injection today...I was in and out of the hospital very quickly!The injection took about 5-10 minutes and I didn't feel a thing.I don't care about the money if it means I can function normally again..If I wasn't having this toe(s) op. I probably would have thought of the cost and waited  but my appt. is 10th Sept and the injection would have been some MONTHS after that.This doctor told me to keep the appt. so that,if the effect of today's injection wears off I will be ready for another one by the time i am called for the NHSinjection..I read somewhere on one of these forums that the NHS don't give the injections continuously so I can see myself saving up in order to get them at this place...the doctor is  areally kind person and understands the limitations this pain brings with it and I believe he truly wanted to help.He said he is very hopeful I will feel a difference in anything up to 2 weeks,he told  me that he will refund his fee!! if I don't  so he must be pretty sure..he didn't want me to fund it myself...I think I told you...he tried to persuade me to wait 6 weeks and get it through Choose and Book at Stepping Hill.Whereabouts in England are you?  Surely you can find a short cut to a pain management specialist rather than wait for the appt.with the orthopaedic surgeon  just to be referred to a pain management person who knows how long afterwards.The choose and book has been useful to me in that a few times now I have paid for the initial consultation and then they have put me on C and B and into the NHS system.

      I said I would tell you my tales prior to today but eveyone has the same stories I fear..I did go to a chiro practor who pulled my shoulders so far back he bruise my ribs and I could hardly breathe for 5 weeks but Iwrote to the practice and got my money back but apart from that I have spent a LOT of money both here and in Greece desperately trying to get some relief.Have you heard about the bed where they stretch your spine? I heard a practice in Nantwich would be getting it so I went there but I had 5 physio sessions at great cost in time and money,all before the bed was installed!!I've since read testimonials and it seems to halp alot of people but Idon't know whether I would put myself in the hands of phsios for somehing like this..

      Anyway...drop ma line to tell me how you are and the second I feel some difference I will certainly be on here to let everyone know about it!!Take care.Jennifer.

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hi again..you will get this before the previous one I wrote....Just to say sorry for the spelling errors..my mind works faster than my fingers...and also for the REPETITION!  I was also on a US site before I found this one and so I can't remember who I've told my story to and didn't think or re-reading my messages to you until AFTER i had sent the latest update.Re-reading all the texts I see you are 3 years younger than me and I think our age has something to do with not wanting to be old,infirm,disabled etc because I don't think in our heads we have ever left the era we were growing up in.Even though my legs and feet must feel like 150 years old to themselves I still sing along to all the 60s songs and re-live the wonderful carefree world I was brought up in.I think we were the born at the best time ever but it's very hard to face growing UP and growing old. I went for an eye test and they told me I should wear distance glasses and I was stunned!  I said I wouldn't get them made up yet and see how I went on..the optician asked me what year I was born and ,when I told her,she said"  I knew it...you've got the same mentality as my dad...he doesn't want to be old either"!!! So there you have it!!Apologies again.
    • Rob777
      Rob777 jennifer1946

      Posted

      Yes that's what it's really all about, isn't it, growing old, being overtaken by things you can't control, and it seems to me that spine/back decay is one of the big ones, along with heart attack and stroke - i.e. there's never total recovery though one can do a lot in terms of prevention of further heart attacks and strokes but not with the back, I think. My fear is that my problem, which is moderate to severe according to the MRI report, is galloping a bit, and new pains keep cropping up, and though I don't seriously believe I will end up immobile, in many ways I think I may.  As I love being mobile, this is a bitter pill.  I am not very good at being dependent.

      I sympathise about the two problems coming together, your toes and waiting for the injection on the nhs.  I was told, by the way, my problem has spread beyond an injection, and a physio assessed me for mri, and agreed her knowledge could not help this except in recommending exercises to strengthen the back and core muscles to support the spine and ways to decompress it - have you googled decompression exercises?  I think they give some relief (I presume the bed you speak of does the same, but this may also be for trapped nerves rather than spinal canal narrowing? dunno) but just for a bit.

      My gp is prescribing neuropathic pain relief, and I am on some amitryptiline and gabepentin at the moment, which I am grateful for and gives some support, and I feel quite motivated and positive in general, but there is always the undertow of wondering where this is going.

      I await more news of the effect of the needle!  Rob

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Well up to today...2 days on...ABSOLUTELY no difference! So that was an expensive little experiment by the looks of it! The  dr did say it could take up to 2 weeks to take effect but I know that cortisone is the wonder drug with instant  effect so I'm not hoping for any improvement.Od course if ther IS some I will be delighted!

      Like you I really worry about being dependent on others.Allmy life I've been the one pushing wheelchairs,accompanying friends and family for treatments and I've always been so thankful that I am the one giving support and not being supported.That's why I just HAVE to get this sorted.I never get anything simple wrong with me and I am trying to diagnose the problem myself...I once had terrible  leg and knee pain,couldn't get up from sitting on the floor at one stage...had scans,xrays etc...it turned out to be a perforated BOWEL!!!   Can you believe it! A surgical mesh I'd had put in had come loose and travelled down and embedded itself into my intestines!!   THREE ops to get it sorted...So now I am wondering if it could be adhesions attached to a nerve so when I go backto Greece I'm going to look into that as we can get any tests etc without referrals from drs!! and this is a shot in the dark soI'd rather go it alone as I'm probably wrong!

      Gamapentin 300mg x3times a day did nothing for me....I hope you get some relief from that as it will make a big difference.

      The bed is a traction device that stretches the spine but,like I said before,I don't know whether I should trust 'just' a physiotherapist......I will look up the  decompression exercises tonight...the trouble is I'mnot very good at doing things on my own!!

      Anyway... alot of people are far worse than us so we have to be grateful and keep on searching.So,speak soon..Jennifer.

       

    • Rob777
      Rob777 jennifer1946

      Posted

      Whilst I am feeling there are distinct similarities in our personalities - stubborn, self-diagnosing, not particularly trusting of professionals, etc. - I wonder if we always go about things in the right way.  I'm like you too in living betwixt two places, you're in Greece and I am in Sicily sometimes.  You obviously trust the Greek professionals, but I would never trust Sicily, Italy being a very difficult country for medicine (according to an Italian friend) and I am not fluent in the language. So I have decided to stay around Newcastle to get all this sorted.  I think you get a better deal if you approach medics according to their rules.

      I am sorry to hear about the injection, and wonder if there's any change?

      I imagine, I could be wrong, the traction bed might provide some temporary relief, but once you stand up and start walking, everything will slowly settle back to how it was before, yes?  You have been diagnosed with spinal canal narrowing, a mild problem, am I right?  I am going to be asking for advice from a physio next week about whether rowing exercise is as good as I think it is, and I will also ask about your bed.

      I agree there are many worse problems then this.  There is an excellent american site spine-health.com, I think it is, full of information, and I think it is somewhere on there that these problems are classified as quality of life concerns, rather than diseases. Rob

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello again!!!I had the same idea about staying in one place longenough to get something sorted.The thing is,the greek doctors are really good and up to now the problem has been that they didn't have adequate resources,equipment etc.I've lived there for 43 years and I've always been happy with the system...we don't have  G.P and we can visit a specialist immediately and get tests done within a day or two,paying a minimal fee(2 euros for an xray for example,11 for a C.T scan.).I always want to get things sorted straight away so I was more than satisfied with the system..Now,however,the situation is so bad over there that professionals,labourers,unemployed etc etc are all after what they can get and that applies to drs....so..I went to see an orthopaedic surgeon not on my scheme...he charged me 50 eu,he advised the MRI and then told me to go and see a colleague of his,a neurosurgeon re having a laminectomy!!   This surgeon was not on my scheme either so to see him would have been 200 eu and thenif he recommended an op...well,I reckon it would cost 2,000 eu or more..I don't trust any of them now,,,they are all hand in glove ,helping each other to make money.Drs on our scheme are not supposed to charge for  writing prescriptions but they ask for 10 eu and will even write prescriptions for people who don't even got thesurgery,just to gt the 10 eu..It's disgusting but that's the wy it is over there at the moment..I had physio and then HE sent me to his COUSIN,an orthopaedicsyrgeon who said I needed my HIP operating on ...he charged me 10 eu for that diagnosis!!  When I came home asked to be referred to aneuro surgeon andhe turned out to be GREEK,ha ha!!  But he said I am NOT a candidate for surgery so he referred me to th pain management specialist(AT NO COST!!!)

      I am so happy to tell you that I have seen some improvement!!  I was very disappointed at first as I  thought was going to happen but I don't wake up at night atall.,which is wonderful,the pain in my groin has almost gone and that ache from knee to ankle when sitting or lying is not as bad as it was before so maybe there will be more improvement still.I am having the toe op on Wed so won't be walking for 3-4 weeks so Iwaon't be able to test the sciatica on a daily basis but I know the injection has helped and I am so glad I decided to spend the money on getting it done before my op.

      So...that's my news for now..I will look forward to hearing what else you have done  and how you get on.Good luck with it all.Jennifer.

    • Rob777
      Rob777 jennifer1946

      Posted

      Very good to hear the injection is taking effect, and I hope it endures a good long while. Very interested to hear what you say about Greece and how its financial ruins have affected medicine; very much not a system to get lost in at the moment. I really am very pro NHS, where I didn't use to be, as it is always under threat and cuts etc. but one can count on their honesty, if not necessarily their knowledge or compassion. Greece sounds a very bad version of the US, where doctors are also driven by money concerns and are content to cut corners if it suits them, or so it seems to me from experience of reading about some people's experiences.

      So your future lies in repeat injections, acupuncture, meds, etc.  I will post when I have seen my orthopaedic surgeon in September, and I surmise I will also not be a candidate for surgery.

      By the way, I spoke to a physio at Newcastle RVI, who said the traction tables are rather old fashioned, and they themselves don't have one (it's a respectable hospital). But yes, the idea would be to decompress the spine, just as you can do with exercises.  I like a rowing machine, which doesn't cause me pain, and puffs me out too, and one of the worst things about stenosis is the interference with aerobics.

      Good luck with the operation. Rob

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello again. I couldn't find this discussion to write earlier..

      Well,I've had the operation and I was up walking the same day and haven't stopped since.Went to the Lake district 2 days after the op an dwalked around Ambleside...If I hadn't been awake throughout and heard the SAW!! and drill I would be doubting whether I have actually had the operation..It's all very odd..The surgeon himself had said to do both feet at once as he thought  I may not go back a second time!  Ionly took pain relief the first day...and my pain threshold is way below zero.I can't understand it.Of course the spinal injection took away ALL sciatic pain but it's now back...not as severe as before the injection  but it's there so I will continue with my own investigations!!! and report back to you with my findings.Nobody else is going to persist in trying to find out what's wrong but it will be US who will be incapacitated in the future so WE have to sort it out as far as is possible.If you find something please let me know...I have been restricted at the gym 'cos of my aching toes but I will be going back and I will definitely try the rowing machine...it makes sense.

      Hope you are managing to stay cheerful..not long to September now.Take care,Jennifer.

    • Rob777
      Rob777 jennifer1946

      Posted

      Hi Jennifer, It's been a few weeks and I was wondering how you're doing; the last message sounded very good - and now? As for me I've had my consult with an orthopaedic surgeon (it was fascinating to be taken around my mri scan) and he's offered surgery which I will go with, waiting list 8 months (well this is the UK after all), but the quoted % good results is high. Let me know how you are. Rob777
    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello!!  It was so good to hear fromyou!  If you knew how often I've tried to get back to our conversation but I can't seem to manage this site ! I do hope you eventually get some relief.I am still struggling...the pain is worse here (I'm back in Athens) as there are so many uphill roads(and downhill obviously but they are easier!).I am determined to find the cause of it all so I went to see afriend who's  a general surgeon  doing mostly laparoscopies,and asked  him if he had ever heard of adhesions sticking to a nerve(I've had 4 big surgeries in the past and it must be chaos in my abdomen).which is the latest thing thay's popped into my head..Well  he said he would like a colleague ,a neurosurgeon ,to have alook at my MRI so for 70 eu I  went along there last night..He agreed with the neuro surgeon I saw in England that there'sno nerve compression in the spine but he came up with PIRIFORMIS SYNDROME,some muscle thing which mimics sciatica but can only be diagnosed by eliminating everything else..So...NSAIDS for 15 days and then 10 sessions of physiotherapy and hopefully I may get some relief.If I don't then my next step is a ct scan with contrast medium of all my abdomen( I laugh when I remember you saying about us self diagnosing!!) because there MUST be a reason for why I am in constant pain ...it's more than 2 years,3 physiotherapists,2 chiropractors,2 pathologists,4 orthopaedic surgeons,3 neurosurgeons,one anaesthetist......I've only got myself left!! So,,,there's my report...If I can find you again I will get back to you with the outcome   In the meantime take care,keep fighting and at least there is light at the end of the tunnel...It was so good to hear from you ,especially with positive news.X

       

    • Rob777
      Rob777 jennifer1946

      Posted

      Yes, this site is a bit of a maze, but I just looked for a past email with your moniker to find my way back to here, but it feels like a tiny island in the midst of thousands of conversations.

      Well, let's hope the diagnostic effort is getting closer to the nub of your problem - Wiki is good on pirifirmis syndrome and magnetic resonance neurography, though it all looks rather new and experimental.  Do they have the right machinery in Greece (if you are thinking of trying to get the problem visualized)? The wiki entry on MRN talks about the equipment at the bottom of the page.  I hope the physio works, though will this be just short term?  How complicated the body is!

      Well all the best Jennifer and let me know how things go - I won't have any news for ages; as I said, my surgery won't happen til god knows when, next summer/spring I guess. We are having an indian summer here (I suppose the mild weather qualifies to be called thus) and I will be off to Sicily in November through to February and then back to Poland (I went there recently to get one or two dental implants!) and then back to here to prepare for the knife (though the surgeon said it's very quick, just in overnight then home).  Marvellous how far medicine has come in our lifetimes!!  Ciao, Rob777

    • archemedes
      archemedes Rob777

      Posted

      Yes Rob, it does bugger up all one's plans and any idea that we are Supermen.

      What a shock to the system eh, but there are worse things in life?

      I'm a sufferer just like you (but you already know that), and my way of coping with it all is to stiffen my upper lip and to soldier on.

      Never give up, and if you do buy a mobility scooter in a moment of weakness just like I did, just leave it in the garage and never use it.

      Periodically you can always look at as a method of strengthening your resolve never to give into the actual temptation of using it.

      All the best.

    • gary1911
      gary1911 Rob777

      Posted

      Hi Rob, this is what I posted on here and then read your messages so thought I would forward it to you, I find your messages very interesting to read.....

      Hi I'm Gary not done this type of thing before and I'd like to apologise firstly for my typing/grammar not very good at it

      not sure where to start as I'm not sure if i'm replying to one person or lots of people, but anyway I read a lot of stories on here and was glad (in a sorry way) that i wasn't the only person going through this, sometimes when you get passed from pillar to post, well I started feeling like I was making my symptons up and sometimes i couldn't describe what was happening to me, not blaming Gp or NHS but you know by the time you get appt symptons have moved around, so you go to all different depts at the hospital.I started having problems 2 years ago just problems walking became a problem, aching leg but prior to that I started having problems in my left arm, pains in my arm, btw it's my left arm and right leg, anyway I went for all the scans had Mri's and yes got early stages of arthritis, in July 2014 I had a lumbar decompression operation I knew all the side affects, however I had and still have problems, not being personal, but I've been to urogolist as I can't ejaculate, have to take pills to urinate and for bowel movement still have all the pain, I'm not saying the operation made it worse because I can't compare, but the pain is worse than ever I now have terrible back ache which I never had before, as well as the other pains and I feel lose of sensation in my left arm more than ever, thank God I have a great partner who takes care of me, before my operation I was able to take a bath but now I can't my partner as to lift me in and out of the bath, I got a bath seat which makes me able to wash myself but I can't clean my feet or even cut my toe nails, sorry if that to much info, but want to explain how much this as affected my life, I used to be a dancer in clubs, not that that as got much to do with this, but now It takes me 20 mins to walk to the bus stop, it's only 5mins away, I'm only 48 and feel lifes over now.

      So my symptons are really based around the hip, it get's very sore and it's like electric shocks going down to my knee and if I put too much pressure on it I get the pain all down my leg and I drag my foot, the back ache is dreadful I just feel like I want to bend over but thats too painful, you know what I mean like touch my toes to strech it, but that's not possible, I now rely on my partner to take me out as I find it's to hard to go out with my walking stick, although I tried really hard I now have to go out in my wheel chair, which is a God's send in some ways, but something I hate, and now I'm having problems in my left arm, I've noticed lately that my hand is starting to curl and my knuckles are getting swollen, dropping things which gets very frustrating.

      Ok think I've rammbled on enough, but actually writing it down made me feel a bit better, I got appt with yet another consultant on 6th March so starting all over again.....appts appts you know what I mean....

      Best wishes Gary

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