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Disaster

VikingVViking Posts: 128
edited 06/11/2012 - 8:22 AM in Matters of the Heart
I am writing here as my heart is aching just a little more badly than my back is at this time.

As many of you know I received a diagnosis of non-fusion on July 4th this year, 15 months after my L4 -S1, PLIF type operation which was to fix a very unstable spondylolysthesis, two "black" discs and bi-lateral fracture of the pars. Now since the bone graft has been re-absorbed, there is only the screws holding my spine together back there and they are not doing a particularly good job of it, in fact they are drilling larger and larger holes into my vertebrae. One of these screws is irritating the S1 nerve , giving the burning, stinging, numbing pain of sciatica which takes my breath away at times, the spondy is unstable again.

To get me through this hell I am again on oxy, along with anti-inflammatories and a hefty dose of gabapentin (neurontin) I have cortex problems , my short term memory is shot to pieces and concentration is frustratingly poor. My sleeping pattern is again a mess and daily life is a struggle. I reckoned that these side effects were to bear until my planned op in mid September. The new larger screws are ready and waiting. As of yesterday I was just awaiting a final date for pre-op and op .

This morning my Spine Clinic rang, and changed my world . The surgeon who was prepared to do my rather complicated surgery has had to return back home to Sweden due to family problems and is not returning . It is going to take a while to find another surgeon , if they find one . If it was a little disc repair one of the other surgeons could find room on his list, but mine is quite a complicated affair, which not many surgeons specialize in, due to the rarity. The consultants are having a conference about my case on Monday or Tuesday and I will recieve a call to tell me if they have found anywhere to refer me, either here in Denmark or in another country I do not know.

I sobbed for about an hour in my husbands arms, after I got off the telephone, then thankfully I slept and am now confused as to how I feel. Miserable mainly, a little angry and just helpless, my head aches from all the thoughts belting around, and my heart is heavy. I can`t believe they moved the goal posts again , I was only 4 weeks from having my life back on track again and was starting the preparations for my recovery at home, including my mom and dad taking a trip over here from England to take care of me when I came home from hospital. They are as gutted as I am.

I just don`t know what to do with myself now , but writing it all down has helped and knowing there are others out there who understand this hollow feeling I have, the cruelty of having life on hold, whilst others try find a solution. I have held myself together for so long , grieving over the loss of my nursing career, the loss of my old life, my inability to tend my house, garden and pets as I should like and seeing my husband sacrifice his goals in life to care for me. So far I have fended off depression and told myself it is not an option as I always could see the light at the end of this tunnel. I suppose I am in shock that they can extend the length of the tunnel without warning .

My part-time job under a sick pay office scheme is becoming too much for me physically and will probably come to an end at the meeting to be held on Monday, the bus journey there jolts me about too much anyway and with the lack of concentration, I will soon become a liability, so common sense says stop now. I have a cold and a fever at the moment and no appetite, nausea engulfs me as I eat a bit before taking my meds, It has been a very long time since I have been so fed up, hubby is sick too and our home is in disarray, for the time being.

Well. enough moaning for now , I hope to have better news to tell you next week.

Viking
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13

Comments

  • i'm so sorry to hear about this...oh gosh v hang in there ...big hugs ...
  • I hope you are able to find a new surgeon soon..take care
  • viking im so sorry about your news,it just seems so unfair,but don t give up, that is not an option for you,if i know you, you will soon regain your strenght and fight to find a new surgeon and i really believe you will,as for work i know how you feel,i haven t realy excepted that my nursing career is over,just know that i, as well as others on this forum are here for you
    take care
  • sorry for you and your situation, viking. I know when having been in chronic pain, losing our past way of life and any little bit of bad news on top of that is devastating. "Moving the goalpost's again" is a good way of putting it. I hope the conference goes well and just know that there is a professional somewhere that can do what needs to be done. Keep us updated.
  • Hi,
    this may be out in left field, but I saw on the news last night where some insurance companies are paying for some types of surgery to be done in other countries. One of them was back and neck fusion. I don't know if this would apply to you but if your insurance is one of them willing to pay for you to go out of the country then maybe you wouldn't have to wait so long. I am so sorry for all you have been though.
    dc :S
  • My heartfelt sympathy for your situation. Just remember that for every door that closes, another one opens.

    "C"
  • Awwwwwwwwwww V I am truly sorry for you. I can honestly say that I know how truly disappointed you must be.

    You are a strong chickie and you have that strapping lumberjack by your side, you will get through this and they will get back to you very soon with an equally capable surgeon and surgery date.

    However, let your guard down, cry, scream, shout, stamp, get it all out of your system and then paint the smile back on and start all over again.

    I haven't been around much lately V, work is tough and getting tougher. I don't have a fraction of the spiney problems that you have but you have always made time for us and I want to be there for you to return the favour.

    I know you have been tired lately but drop me a little nudglet to let me know when you are around - I'm missing our coffee breaks together.

    See I've got my listening head on :B

    Doofie
    xxx
  • im really missing are coffee mornings 2,we will have 2 change it 2 cocktails in the evening now doof is back to work
    thinking off u v,just think off the guiness and craic we will have when we sort thinks out maybe next year or we will just have 2 come to you lol
  • thoughts are being sent your way! You know that we do all understand your misery and I am so, so sorry to hear of this. try and look at it as a minor setback. Maybe this has all happened for a reason. Maybe there is a much better surgeon out there that is just waiting to take your pain away. It is not the end of the world as it seems, just a very minor setback and I just know that a great surgeon is just around the corner for you. It will work out. Please let us know what they say on Monday.
  • You must have exceptional tenacity lady! Hang in there (I don't know what else to say!) I'll be thinking of you.
    Sagehen
  • V , I am so sorry that all of this is going on. I am here if you ever want to talk , cry , vent , yell at someone , whatever my friend , I am here for you. Please keep us posted as to how you are doing and what is going on.....Miki
  • After 2 solid hours sleep (!) during the night, I attended the evaluation meeting at work today, present was my mentor, our boss, my case worker from the sick pay office scheme, and for moral support lj, my husband .

    I stunned them to silence with my news initially . I explained how I was feeling physically and emotionally and it was decided that it was best all round if I stopped work from today. The case worker informed me that she can keep me on sick pay for 6 months , but due to the severity of my injuries and no guarentee of a stable pain free life even after my next operation, she was thinking of applying for a pension for me. Although I don`t really want to be a pensioned off at such a young age, this would leave us with a stable financial outlook for the rest of my life.

    My boss said if there was a possibility of me wanting to, and being able to, then she would like me back, no matter how long it took! My mentor agreed.
    They , like me could not believe there were no surgeons available in Denmark to do my complicated surgery at this time and had to have the letter which I received from the Spine Clinic on Saturday read out twice, before it sank in . I got big hugs from my boss and my mentor and other co-workers, and was made to promise to keep them informed on how I was doing.

    I cried a little when I left, I think because I shall miss them and also because it was a bit of a shock to have "pension" mentioned , but also a relief that it all went so smoothly.
    We went shopping afterwards and then came home, had lunch and then I slept well on the sofa for 5 hours.
    I can concentrate on looking after myself now and I think I will start swimming, exercize at the pool takes a whole days energy, but my muscles are wasting fast and it is the best way for me to work on my muscles since I can not lie in my back to do core exersizes without pain. I have decided to take my break through oxy as needed from now on and hope this will help my sleeping pattern , I have avoided taking this before as I could never function at work if I took it.

    Now I have to wait for the Danish National Health Service to find a solution to my surgical needs, whether it means me going into a hospital on Zealand Island (thats the one where the Capital City Copenhagen is) and then hire a surgeon in from Sweden, Norway or Germany. They may possibly send me abroard.

    Viking
  • I'm really sorry :( That must be terrible. I can't imagine being told I had to wait an unknown amount of time... I am upset over having to wait 6 more weeks. Kind of helps me put things into perspective a bit. I really hope they can find you a good surgeon and you can get your life back.
  • that we both get 6 months sick pay,id hate to think what would have happened without my pay,nows it is indeed time to look after you and hopefully get some resolation to your back complaint
  • you are both very lucky in that respect. We are not so lucky with sick pay here in the states. Good luck Viking. I just know that it will work out for you.
  • Aw V, I am so sorry to hear what's been happening. Like Doof, I haven't been around much. Things are still getting worse for me!

    I hope they find you a new suitable surgeon soon. Sounds like you need a good hol :) I've just had a fantastic girlie hol in Turkey and have come back relaxed and ready to tackle the next instalment of my spinal sava which is 12 months old now.

    Am thinking of you hun and miss our coffee mornings too - we should def try cocktail evenings :)

    Doof & Ben, hope you guys are well too.

    Will try to catch up with you v soon.

    Cx
  • Viking >:D< i am so sorry to hear that u have been let down like this at the last moment. I am so shocked that that you have beeen dealt such a cruel blow of fate. I hope they find the surgoen for the job very soon.
    Now you have left owrk you have time to focus on yourself and focus on building and maintianing your strength. Swimming sounds like a good idea
    Have u ever been in a floatation tank? I found it helped with the pain n stiffness a bit at the time and was quite relaxing. U can lay in any position without sinking
    I hope hubby is looking after you well .
    i'll be sending u healing vibes. I hope the DNHS comes up with a speedy solution
    much love martha xox
  • another guilty companion here for not being around lately @) @) !!!!!
    so sorry for all you pain v and i really hope you are feeling a little better of late.
    lets head for next week to get those coffee mornings sorted,we all sure do need a good catch up.
    im so sorry for not being around over the summer, ive lost your number so please please send it to me in a PM.
    lets get this little family of ours back on track what you think big sis????
    ill be here monday 9.30am and hope the others will follow suit ..........ya here me girls!!!!

    LOVE PAULA
    OXO
  • Sorry girlies, mornings are no good for me anymore now that I'm back at work, I'm usually home by 1 though if that helps.

    Bisto
    xx
  • It has taken me over 24 hours for the contents of the letter I received yesterday to sink in .It was from the Hospital in the next town, they have the task of finding a solution to my predicament of not having a surgeon who is willing to do my somewhat complicated surgery - a re do of a non-fusion .
    The letter says

    "We have received a referal from your doctor and we inform you that the waiting list for an ambulant appointment is approximately 4 months and you will receive a letter with a date nearer the time.
    If there are meaningful changes in your condition during this waiting time, you are asked to contact your doctor for a new evaluation."

    The letter is accompaied by a print out sheet fron the waiting list website, it is the waiting list for slipped disc ops . They probably sent that as there is no mention on the lists of any operation simular to mine, but it does say that 16 weeks is the expected wait for uncomplicated operations like slipped disc ops .

    So I have gone from expecting to have my operation next week to starting from the very beginning with investigations some time after mid January next year. Obviously I have made an appointment with my GP to see what he thinks of it all .He can see me next week . I have a written report of the CT scan, the results of which I have not had a doctor explain them to me properly and can not and will not wait until next year for an answer.

    I have a feeling of impending doom , that I have a fight on my hands , but to begin with I shall have to play nice and go through the correct channels, seeing my GP next week is the first step , I shall inform him that I can no longer work, that I have found it necessary to take an extra 5 mg oxy (ER) and have taken oxy (IR) at night when I have woken up with pain and that my life is limited even more since I don`t drive when on oxy and my walking capabilities are becoming poorer and poorer . My mental capabilities are just a joke due to the side effects of Gabapentin (Neurontin ) and Oxy .There is also a quite audible , worrying "click" noise from my metal work occasionally and that this life is just unacceptable and getting worse .Hopefully all this combined should qualify as "meaningful changes in my condition"

    So that is the saga so far , I am fed up with it all and am fighting an awful feeling of helplessness all the time, It is very depressing , being the buck that they are passing along , and not having the energy to get on with anything in particular, in fact my main triumph today was having a shower, washing my hair and putting clean pjs on. (I ended up sitting for most of my shower as I can`t stand up for that long)

    I shall write again here when I have seen my GP next week .


    Thankyou to all who have replied with their support and their friendship. :> Viking
  • my darling v,
    it doesnt seem to long ago that you were well on the road to recovery and you started your new job and you were just settling in nicely when you have got hit with this tragic bump.
    i am so sorry that this has happened to you, you are a fighter and i know you can get threw this you have always been there to support us when we were feeling down and i just need you to know that we are all here for you know matter what the outcome.
    dont leave the GPs office without an answer that suits you, be strong as i know you can do this,i think about you everyday but i just dont seem to catch you around anymore.
    ive lost your mobile number(long story) please send it to me again in a pm and we can stay intouch that way.

    your friend always
    LOVE PAULA
    OXO

    hey girl you better get that up because it looks like denmark is on our travel cards next year!!!!
  • Viking,

    So sorry to read everything that you have been through. I'm thinking of you and sending you lots of love, gentle hugs and positive vibes that somethig can be done so much sooner than January.

    In your posts you sound a remarkable, strong lady. Now you are having an endurance fight on your hands - if you grow weary we will be there to pick you up, to cheer you on, and give you any support you need.

    Take care and those coffee mornings/cocktail evenings sound just what the doctor ordered - a chance for everyone to let their hair down.

    Take care Viking,

    Lots of love and hugs
    Danni xoxoxo
  • Viking i just wanted to let you know that im thinking of you and hope things get sorted and soon xoxoxo

  • Well I have been to my GP today and have had a good chat about the long wait I seem to have ahead of me and the concerns I have, as to whether the hospital is quite clear about what I am actually waiting in their queue for. The Hospital has sent a print out of the waiting lists for Disc Prolapse operations and mention nothing about receiving the results of X-rays, MRI and CT scan all done within the last two months showing my need for removal of all the screws and rods and a totally new fusion from L4 to S1, my GP agrees that this is quite strange as he has never heard of an operation like mine being done at this hospital , nor does he know of any surgeon there who has carried out such an operation , so he is sending a mail to highlight my worries.(That is a good result as it is not really his place to question their capabilities, I imagine it will be a difficult mail to formulate. )

    He did however point out that the hospital which does have such a surgeon and practical capabilities, has a waiting list of 75 weeks !!! He suggested a telephone call from me repeating these points and concerns may ensure that they take a second look at my papers, and review their decision . Although it is an incredibly long queue, at least it will be the correct queue and with the specialists who can do the job at the end of it. So, again my case is up in the air and here I am waiting for news yet again and I am preparing myself to put my case as concisely as possible on the telephone tomorrow. I am scared, as what I say and how I say it, may or may not reduce my waiting time. 75 weeks is sometime in March 2010 !

    My GP listened to how I am every day (and night) and my pain levels and patterns, and he has prescribed more oxy-contin , so I am covered 24 hours a day now. I have oxynorm for breakthrough, and hopefully I should see a difference in my day to day living pretty soon , although I suspect that I shall not feel safe to drive anymore, now I don`t just take an oxy in the evening when all the days driving I need to do is done.

    I have asthma and am at the end of a long drawn out cold. I took the opportunity to have my lungs listened to, as they are whistling a bit , like they do when I have a lung infection , but luckily they are all clear and I should just take more of my inhalers, both the routine one and the here and now one. So thats one good thing.

    I shall of course keep this saga updated on here.
    Thankyou to all who spend their time chatting with me during my sleepless nights and those of you who keep my spirits up with their posts in Lighten and Brighten!

    Viking.

  • Hi viking, im hoping u can get on ok with the phane call and perhaphs get ur much needed surgery soon......im always thinking of u....u have come through alot and u will come through this. >:D<
  • After a week of waiting, my GP received a mail back from the hospital. Nothing can help my cause aparently.Well at least he tried. he said the hospitals answer was that if it was nothing life threatening then there was no way to get me seen quicker and had received assurances that there was a surgeon at this hospital who can do the job, but obviously my GP wouldn`t guarentee that the surgeon wouldn`t up sticks and leave me high and dry like the last one did.

    I can contact the patients committee who help you find shorter waiting lists and advise you what to do to find private alternatives, but at the moment I just don`t know what I want to do, this is the shortest list and is at a relatively close hospital, unlike last time where the travelling to and fro increased my pain.

    The surgeon had explained to my GP that they have had to reduce staff by 50%, due to cut backs and this was the cause of the long waiting lists. The Hospital I prefer (with the 75 week waitinglist) is also affected by these cut backs, so the queue over ther isn`t going to get any better,my gut tells me to stick with this 16 week one, there is still a chance that they will see me there and operate on me else where.

    So I think I had better just dig in for the long wait and hope. It is a matter of priciple that I do not go private since both my husband and myself have paid huge percentages of our well earned wages into the system and don`t see why we should take a loan out and have my husband work all hours to pay it back. Here once you start private everything has to be paid for privately, so it would be big money we would have to raise to get me operated on quicker . I may not have a life threatening problem , but it is definately a problem which is attacking my quality of life and its a constant battle not to get depressed about it.
  • As a fellow sister Nurse I can understand the pain of having to let go for now. It's good you have the support of your Boss and collegues. With all these health cuts, it's putting pressure on health care workers to shoulder a already physically demanding job. I'm hoping you get the surgery sooner and have a comfort level free of pain. I take amitriptyline for nerve pain as well as for depression from the situation, I saw you in chat and sorry I had no idea what you're going through. THinking of you and wish you healing thoughts. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hey stranger,

    Sorry for the lack of communication recently but have been v busy sorting stuff out - enough about me. What's been going on with you?

    What's the latest V? I am so so sorry to hear about this. It sucks and sounds worse than the NHS. Just a thought tho, why don't you see if you can be referred to a surgeon in London? There are a few that I know of that love and specialise in complex spines and they are excellent! Shame I didn't have these from day one but hey ho.

    You are strong and will get through us and we're all here for you. 4 months is a long wait for anyone but especially for you that needs an op soon. Hang in there babe you will get sorted soon.

    Cx

  • As many of you have read I am on a waiting list at a hospital near me to have a revision of my failed fusion re done. The 16 week wait should end at Christmas, and I had resigned myself to the wait, so that we were not driving long distances to attend all the different appointments and to make it a possible journey for friends and family to visit whilst in hospital this time .

    Well I was at my GP yesterday getting my flu vaccination and my Doc said I should ring the Visitation Office as soon as possible and be moved to a different waiting list as he had heard from anunofficial , but reliable source that the spine department I am referred to is closing 1st January 2009.

    We rang the Visitation Office today and they admitted that they had heard the rumour too , but as my case was somewhat complicated , we should ring another number , which we did , but they just had an answer phone on saying they are open again on Monday ...

    Also the Government is changing the law on 7th November , so patients can not change waiting lists after that date .

    So I am all stressed up and waiting again. ~X(


    I have just had every possible influenza symptom, a sad old spiney can get following my flu jab and am luckily over it 24 hours later , all but the tiredness I) (Just need to go shopping for kleenex and loo rolls now... was that TMI ?)

    Viking ;))
  • im sure to fed up,hopefully you will get you re surgery soon
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