Degenerative Disc Disease or SRS Segmentell Rörelsesmärta: Diagnosed too late.

It’s been a long time since i posted anything. However I’m going to try and write more often again now! It can help to write about how I feel, I think?

I have now been diagnosed with Degenarative disc disease (DDD). I have had a problem with my lower back for 11 years now. Every orthopeadic doctor I have met (about 4-5) have never been able to tell me what’s wrong apart from the 2 herniated disks, and that I am not bad enough to have a fushion in my spine. The last doctor I met told me that he couldn’t operate at that time because I have a problem on 2 levels in my spine. The risk of being worse afterwards was much higher. That was about a year and a half ago.

Well after trying and trying for 2 years to get a recommendation see a spine specialist here in Sweden, I finally get one and met him last week. After just 10 minutes I get my diagnosis! Degenarative Disc Disease (SRS på Svenska). However he also told me that it is too late to have a fushion! I should have had one a long time ago! I was so frustrated! All the doctors I have met and not one has taken me seriously! Which is normally the case when someone has a problem with their lower back!

Basically I have gone too long with pain and now my body is totally out of shape. I walk very badly, sit very badly and stand very badly because I do everything I can to avoid pain in my back. Even if they operate now I will still have just as much pain. I have no muscle left around my lower spine to support it.

He has a few ideas that could help me… A different kind of injection in my spine which they will do whilst looking at an xray so they can see exactly where the needle is going. That way they can make sure the injection is going into the right place in my spine. Another option is to be in hospital for a few weeks so they can sort out my pain medication properly and give me intensive physiotherapy to try and correct how I hold my body up, sit and stand etc. However he has told me that it is going to be very hard to help me now because it has taken way too long for someone to listen to me.

So, that’s where I am now. I am waiting for him to ring me with a decision.

PS: I don’t know whether to write my posts in English or Swedish!

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~ by pipkinera on March 13, 2013.

12 Responses to “Degenerative Disc Disease or SRS Segmentell Rörelsesmärta: Diagnosed too late.”

  1. It´s a shame that you haven´t got help!! Well, I have the same experience from the swedish healthcare. My problems started 1989 and I have tested all sorts of treatments and met all sorts of doctors. Not intill 2010 I got my diagnos, SRS! After 21 years! Two years ago I got my fusion done and it really helped. But I´m sorry to say that at the moment I´m worse again and I have to take a new trip in the swedish healthcare….
    Like your blog!

  2. I seems that it’s very typical that we have to go through several years of pain and meeting various doctors before we ge a diagnosis. Most doctors don’t even recognise SRS yet.

    I’m sorry you are worse now…. I really hope that they can help you!

    I’ve lived here in Sweden 9 years so my back journey has been within the swedish healthcare system too.

  3. Well because you write in English I am going to reply you in the language you chose.
    I’ve got DDD and 5 disc herniations. I am going to have a fusion this spring. And I know just by writing it to you it is going to sting in your heart because it is to late for you.

    When I got my HD( hearneated disc) diagnoses I was in a really bad shape and the doctors had no choise but to operate me and put me on a heavy fyziotherapy program.
    And while I wasn’t able to move at all, just lying in a bed. My stomac muscles got so trained that I got better.

    http://itekoppen.wordpress.com/2013/03/07/lat-mig-presentera-mina-magmuskler-och-en-superbra-magovning/

    You can see for your self in this link above. It really helpt me. And I got another tip for you. Go out get a set of highheels with a vedge so they are stable to walk on. That will help you to not put to much presure on your ischias nerve and with less pressure on your nerv, less pain. I know it sounds mental to walk about in high heels but it is’nt. It was with high heels I was able to start walking again.

    If I where you. I would be hospitalized and there is a group on facebook called Ryggstödet. For us with back pain, I’m in it and Lippe are too there you can get allot of support and help.
    You should also try to find out about meds and if they do not work try a nervsträngstimulator.
    And for pets sake get a TENS. that thing is magical. It is a electrostimulating thingy that blocks the pain in some how. I am in love with it.

    Hugs

    • I have tried those stomach training exercises, I got them from my sjukgymnast but I get ryggskott every time. I have other instead that has helped me loads to build up my muscles. It’s the same except I do it when walking! Now I can actually feel my stomach muscles!

      I might actually try the wedges! And if it hurts too much then I can lay I the sofa with them on and look great! Lol

      I am on ryggstöd 🙂 I have been there for ages now hehe

      • aha can’t you say hi to me there. I am admin there.
        I do that exersices when ever I can. When my back start to acce ( my memory is short here for the spelling, sorry) when I am out walking then I do it, it actually helps allot, or it takes me home. Like now, now I am tucked into bed with my beloved psoaskudde. If you do not have one, get one. That little squere of heaven is lovely. And you will love it too. I promisse, it is expensive, or well it depends on what you compare it to. But I have put up that link on hjälpmedel( what is the word for that in english jeez, I am getting bad. )
        You can get one for around 500kr-800kr. Money well spent.
        What are you thinking of doing out of a medical point of view, what are you leaning towards?

        • I have never heard of that kudde. I’ll have to Google it! Is it a warming kudde?

          I have no idea what will happen now. Åke from the spine center is going to ring me when they have a plan. He can’t see any solution with surgery. Mainly because it’s taken too long as I’ve said. He also said that I have no muscle left around my spine and stabilisation training would be good for me. I talked to my sjukgymnast a few months ago about it and she thought it was too much for me. But I’m going to talk to her this week and tell her what he has said.

          Your English is great. Do you get to use it much?

          • No it isn’t a warming kudde it is a big square one that you use to have your legs resting on to relax the back. It can also be used as a exercise tool.
            http://www.medicalfitness.se/produkter.php?view=productPage&product=115&category=

            Here is a link to one. It is great. If you get allot of spasms you can use it to relax your legs, or your back. And I use mine all the time. For example when I went out for a walk to Konsum and my back desided to be a mean one and stab me as I took a step foreward I went straight to bed and are still laying there with my legs up on my psoaskudde. It is a great tool for less pain and relaxation. Try one, you won’t regret it.

            As a really long answar to your question. No, I don’t get to use my english much. My dad was a sailor before I was born and started talking english with me when I was 4 years old. And one of my best friends are halfbrittish and her mother is Swedish but grew up in Liberia so they speak english at home and I got use to it. I actually sometimes think in english because it comes naturally to me. I wish I could use it more often and that a future employer ses my potential and that I actually speaks it fluently with a wierd accent, it is a mix of british english, swedish flow, american and scottish haha. I backpacked in Scotland for 2 weeks and it stuck on me. When I am abroad people do not think that I am swedish, but they can’t really tell where I’m from.

            Have you got a pic of your spine from the MR? I would like to see it. I am always couriuse about MR and how other spines look.

            • I’ve had a look at the kudde. I’m not sure I could even get my legs up like that! Lol For the short periods I do lie on my back I can’t lift my legs at all. Can you?

              Your accent sounds like quite a mixture! Shame you can’t practice much. You can practice your writing skills with me now too! 🙂

              When I was with Åke Blixt last week I actually saw a picture of my back for the first time, but I don’t have a copy. Can I ask for one somewhere? I only have results of all 3 MR’s.

              He pointed out to me the 2 diskbråck i have, the small förträngning and that’s it really. He didn’t point out anything else. And I wouldn’t know what to look for anyway. But SRS isn’t seen on a MR is it?

    • I forgot to say that I get help with message from Uddevalla smärtkliniken and use a TENS everyday 🙂 I really am doing everything I can. Can you train at a varmbassäng? That works for me.

      • Well since I moved from Umeå I havent been able to get into the phyziotherapypool at the Västerås sjukhus, but I guess I will be allowed there when they have stabbed me with the knife, wont they?
        What is the long term plan for you? Is it that your disc will degenerate so much that you will have no disc left? Or what are they thinking? I mean they have to have a long term solution for you?
        And why wont they use a discimplant? Diskprotes?
        I mean that would surely help in some way won’t it?

        • Here there is a varmbassäng at the badhus that the sjukgymnastik loans so we can use that. You surely can go when you have had surgery! It’s such good training, the only one that works for me at the moment.

  4. Would you like to be attached to a spine site to help others with different back illnesses. We are starting up a site for swedish citiesens that are looking for support. And there are loads of u informations from hospitals but almost nothing from us who lives with it.
    If you are intrested as I hope you are you can send a email to lottazblogg@hotmail.com
    with a pic so she can attach you to the webpage. I am linking my blogg aswell. And thought that it would be something for you too.

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