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hi everyone im stephen i have grade 1 spondy.

Posted , 6 users are following.

steve73265
steve73265

i was diagnosed with this condition 1 month ago .im depressed now and i get a lot of flare ups that hurt really bad. just curious on average how long do they last seems to last for  i  dont fully get  over them for a day or two ...is that normal..my side hurts and seem like mid back too .......i go to physical theraphy but that seems to bring on the flares.....so now i dont know what to do....can someone please give me some advice.

1 like, 14 replies

14 Replies

  • stephen22480
    stephen22480 steve73265

    Posted

    Try the phisyo , put a lot of effort into it, try to put surgery off until you've got to, everyone's condition is different , a lot responded to surgery, unfortunately some don't , lots of nerves in the back, and all sorts of things can aggregate them, it's not nice, and it seems to come nowhere, and can be very very painful. All the best.
  • SteV3
    SteV3 steve73265

    Posted

    Hi Steve,

    You state you see a Physiotherapist for your condition, especially for the spine.

    I am assuming you have seen a Neurologist that referred you to see a Physiotherapist?

    My Neurologist referred me to see a Neurophysiotherapist, the difference being is they specialise in the back, spine and brain areas, hence they start off slowly with pain relief, I was told to take 1,000mg of Paracetamol before my appointments has this would help me and how far they can help.

    In my case, after several months my Neurologist stopped me from attending Physio completely, and upped painkillers instead. Most of the time I am in pain, I was even given an hospital bed which is electrically adjustable, and the mattress is one that massages your back all the time. It really helps me sleep, I have to sleep sat up, not completely but enough to be comfortable.

    As the other Steve pointed out, surgery should be your last call - it will prolong the recovery.

    Regards,

    Les.

    • lindagkelly
      lindagkelly SteV3

      Posted

      Have you  tried wedge pillows? Not just the dinky ones, but the big ones that are adjustable?
    • SteV3
      SteV3 lindagkelly

      Posted

      Hi Linda,

      Thanks for replying to my message.

      We have a few wedge pillows, but for me and my disorder they are unsuitable. My main condition is Generalized Dystonia, but with this I have other dystonic areas because it is now Generalized and not Tortion Dystonia (which affects maybe a few limbs).

      My neck and shoulder is where I have pain most of the time, but also towards the bottom of the spine, for that I am on high dosages of pain killers. My neck is constantly being pulled to the left and down, which is called Cervical Dystonia, it is being treated with Madopar on a daily basis (orally in tablet form) and also via 6 Botox Injections to the cervical area every 10 weeks by a Neurologist, basically to top up the level of pain relief that is caused by the constant pulling of the neck muscles, which causes the muscles to bulge outwards.

      I use 2 normal pillows and a single V-shaped pillow to stop me sliding either way, The V-shaped pillow fits in to the bed rails which are located on both sides of the bed, just to keep me in a central position. I have to have my legs, ankles and feet higher up, so I have to adjust the bed for that or I wake up with all those areas swollen and with muscle cramps.

      Then I must raise the top part of the bed to about 60 to 70 degrees, or by the morning my back locks up, and I am unable to move. It can take 45 - 60 minutes with the help of my wife to get out of bed and get dressed.

      We have had many adaptations to the bungalow over the years, mainly because it's a condition that is only controllable via medication, but becomes progressively worse over time. I was offered DBS (Deep Brain Surgery) about 30 years ago, but the risk factor of becoming worse was 95%. I would not gamble with my life like that - I have met a few people that opted for DBS and both, are far worse than myself.

      I was not born with this condition, it was caused by an accident towards the top of the spine, and certain nerves. The disorder alone is hard to cope with, but with it comes other nerve system ailments. I was only 20 at the time it happened, and back then there was only 7 known cases in the UK.

      I good suggestion Linda, but one that is not really suitable in my case. I wish life was that simple...

      Regards,

      Les.

    • steve73265
      steve73265 SteV3

      Posted

       hi les thanks for all ur advice.. i have spondy as u know my left side of my neck does feel still little stiff  bit in the shoulder area to .do u think that is from th spondy.....id apperciate ur advice.......thanks
  • lindagkelly
    lindagkelly steve73265

    Posted

    Hi Steve,

    Hopefully you have  a mild case. I found this information

    Non-Surgical Treatment

    If the spondylolisthesis is non-progressive, no treatment except observation is required. Symptoms often abate once precipitating activities cease. Conservative treatment includes 2 or 3 days of bed rest, restriction of activities causing stress to the lumbar spine (e.g. heavy lifting, stooping), physical therapy, anti-inflammatory and pain reducing medications, and/or a corset or brace.

    And I would slay that if your PT is making it hurt worse, definitely tell them, and tell them exactly what part of the exercise hurts.  If you aren't better in a month or so, you should go see a pain management specialist and they will probably refer you to a neurologist.

    Also, you should probably ask for muscle relaxers. This will help with the muscles that are being stretched and pulled from the disc slippage.

    Be patient, thise things can take a while.

    Hang in there, and stay in touch.

    Linda

    • steve73265
      steve73265 lindagkelly

      Posted

      thank you linda  for ur reply.i have a question for u how would i be able to find out wheather its progressing or not? mostly all i do in pt are the pelvic tilts anyway and alittle bit on the stationary bike...couldent i do that  stuff at home and still get better.thanks
    • lindagkelly
      lindagkelly steve73265

      Posted

      You can definitely do your exercises at home.  The PT is good at making sure you do it right, plus they can help with other things like a moist heating pad, or a massage, etc.  If you decide to get surgery, all I can say is research your surgeon as much as you can.  Google him/her and see what other patients are saying.  If I had done that, I probably would have not ended up with the first surgeon who did not know what he was doing, or the 2nd surgeon who likes to experiment on people and doesn't care if the patient ends up in more pain, or the 3rd surgeon who does surgery in the wrong place - knowingly - because that's easier!
  • dawniesback
    dawniesback steve73265

    Posted

    Hi Steve! I am sorry you are dealing with this painful problem! I, too, suffered with spondy at 3 lumbar levels for a few years. You owe it to yourself to do everything you can with as much effort as you can for as long as you can. That being said, I finally caved and had a 4 level lumbar fusion on June9, 2015. I had no other choice as I developed complications from the spondy. Was it easy? No! Was it worth it? Yes. For me, I had good results and am almost pain free. I have had to give up or modify certain activities I once was able to do/enjoy, but I have had to accept it and move on. I wish you the best, saying a little prayer for you!
    • lindagkelly
      lindagkelly dawniesback

      Posted

      So happy to hear a success story! Thank you for taking the time to answer.  You give encouragement to more than Steve today.  I had a 5 level fusion which unfortunately failed at Level L5-S1 twice.  The surgeon has given up on me.
    • steve73265
      steve73265 dawniesback

      Posted

      hi thank u for all your replies.if u dont mind me asking what kind of complications did u run in to thanks.?and do u have any pain today.?
    • dawniesback
      dawniesback steve73265

      Posted

      Hi! Bear in mind that everyone has different circumstances. I dealt with the severe pain from the spondy for about 4 years. I started losing control of my right leg. I would stumble, or I would not be able to pick up my foot. Once at the grocery store I lost control of the entire leg. I also started to show symptoms of Cauda Equina. Google it, lots to read. Sometimes, I wonder why I waited so long to have the surgery, but on the other hand, it was a risk. Some are not so lucky. My rehab was long, required tons of patience. I had a lot of support, for which I am grateful.I have a numb lower back and sacral area (on the skin), guessing it is nerve damage. Hoping it will heal some more. Was told it could take a year to get a clear picture of the extent of healing. I have to take really good care of my back from now on, no twisting, minimal bending, weight restrictions on lifting....I am still rehabbing to gain strength. It's all good! Better than before. I am blessed!
  • ellen82139
    ellen82139 steve73265

    Posted

    Welcome to my club!!

    i have the same as you and was due fusion surgery in January but no hospital beds so it's rebooked for 24th of this month.it is unstable as has movement and you too will need fixing as it can get really bad in grades.

    i worked for the lovely NHS as senior staff nurse,and whilst on a night shift fell from a high chair onto my back,I've now been dismissed from my job on the grounds of ill health.

    i am on a whole pharmacy of meds ,am sure you are too.hope you get yours sorted and send all good wishes

    • steve73265
      steve73265 ellen82139

      Posted

      thank u for your reply..well as to wheather i will be needing to fix my issue that all depends on if it is stable or not .but im sorry for all ur pain...
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