About me

About Me

I didn’t make this site to be about me (although have learned a lot making it), it’s an info site about SCS, it’s just an alternative to the other 95% of  BS SCS info that’s out there that’s all.Im not going to write a poem or a limerick or explain chronic pain but just a quick few bits of my own experience which is really embarrassing as I hate to talk about it really because 99% of the planet would love to be in my shoes right now. I can eat as much, drink as much, got good family and friends so I hope I don’t come across as like I’m having a pity party here.I’m going to keep this simple but as I said email me if you want to know more. I’m at spinalcordstiminfo@gmail.com

Had a Microdiscectomy L5/S1 after a fall and training fairly hard plus had worked a lot of manual labour jobs (and stupidly carrying on with the pain) in 08 in which the surgery left me with FBSS(Failed Back Surgery Syndrome)which wasn’t diagnosed until years after. The surgeon who done the Microdiscectomy surgery could of told me or at least spoke to me after when I noticed new scorching burning pain down the back of my left thigh but alas-He had done a disappearing act,not literally but for some reason he wouldn’t see me,he done his job,he had other patients,I was on my own..

I can understand operations not going to plan because of human error but most of all just some peoples bodies react differently to operations at different times in their life’s.Its why there’s always a risk but all I and I presume yourself would want is some answers as to what may have went wrong and not just tossed away to the “failed” pile.

Notice to Some Surgeons-

grow-a-pairMan up (or woman up) when things don’t go according to plan and just answer the simple questions we have like-What to do now? I signed a waiver, my body reacted badly to the surgery, shit happens, I get that but give me 5 minutes at least to ask a few questions…

This in turn left me laying down for 3 and half years as I couldn’t sit because of scorching burning pain down my left leg but only when the leg was touched by something even the slightest bit of pressure and the burning was incredible, sitting was just out of the question,I stood to eat,I stood to watch TV,I stood to use a computer,I stood,I stood……….-neuropathic pain had just become my new best buddy who just wouldn’t leave me alone for the next few years. I ended up standing all the time for the first few months after the Microdisectomy until I couldn’t stand anymore because my feet and lower back started to give way so I had to take to lying down,basically I was bed bound from then on. Lost 3 jobs blew my money on all sorts of, physios, chiropractors, spinologists etc. Was running 50+k miles per week before; now practically bed bound-Not how I imagined my mid-twenties …….

After years of medications, injections, going around in circles with clown doctors in empty suits who would  just nod their head and do nothing, doctors who didn’t believe me with their looks of disdain and doubt in one eye and a euro sign in the other-Needless to say I got nowhere,my wallet was noticeably lighter as well I found. Sometimes I wanted to smash my knees and back up with a hammer so they could now “see” my pain….

www.pinterest.com1111I’ve never really felt cursed or sorry for myself.Pissed off? Yes. Dealt a bad hand? Yes…Shit happens was the way I looked at it.I’m still a very deeply bitter b*****d to doctors who didn’t believe me in the past because my pain could not be seen,especially the trouble they put on my family. I know everyone who has chronic pain has the same experience of this but this was the one things that to this day I cannot forget. Others in my situation I’m sure would (and I know have) laughed it off or put it to the back of their minds but I can’t, It’s just me…I have however met amazing doctors that went way and above the call of duty of a doctor and I will be forever grateful. I am a different person inside my mind and my whole outlook on life, although I act the same, I am different both good and bad………

 

End In Sight-

I was referred to Two Doctors in who I could say saved my life(literally) in many ways in Dublin.They were amazing,they know who they are and im forever grateful.It wouldn’t be to far to say without them id be dead by now,one way or another. I was 10 just stone when I saw them, the pain had worn me out so much it was sucking away my body fat and everything good about me and being 6’’3, it wasn’t a pretty site. My jaw hit the floor when he mentioned an SCS!!!-I thought he’d just give me some new medication!!!I had given up hope before I met them and resigned myself to the fact that I would be on hard core pain medication for life-I had accepted that and was happy with that to be honest-at least these docs could offer me something as I saw after meeting them.The surgeon along with his specialist pain doc,they gave a shit about me,they believed me and they were as determined as I was to get rid or ease this pain. I was also happy that if I have the trial and fail I’d be happy then to not try at all, i knew I’d be kicking myself forever if I didn’t try.

I was coming to the end of my trial and it wasn’t looking good at all. No relief in sight. It was a long trial as this was last chance for me.

hallelujahThen at 5am one morning, instead of waking up (the fact I actually slept was a signal in itself) to my whole left leg burning instead I had this soreness. I’ll take soreness all day long!!!I hopped outta that bed like I was 5 years old on Christmas morning. That day was the first day I sat for over an hour and a half in almost four years, was it sore? Yes it was…-did I want to cut my leg off because the pain was so bad like the years previous-Hell no…!!!

As the days went by I got more and more confident siting for longer and longer until I maxed out at 5-6 hours a day,every day(on a comfortable chair) WITHOUT any leftover burning when not sitting.Ive no words to describe the pain relief……….

Had a permanent SCS in 2011 and it works amazing-Exact same pain relief as the trial. I hate putting a percentage on pain relief but if I was forced id would say 60-70%.Am I anything like what I used to be when I was fit and healthy?No,miles from(not too far)  but I’m a million miles better off then  before I got the SCS……

I don’t want this to sound like some fairy tale story where all my aches and problems subsided and I spent my days lounging on my yacht in Monaco sipping champers with beauty models-Although that would be nice!. I still have pain and soreness. I would imagine if I gave my chronic pain and to someone for a day they would think it was the worst pain ever because this is all new to them but for me and many other reading this when all ya know is agony youl take soreness all day”

What I Learned-

One thing I will say on doctors before I ramble on is if your doc doesn’t believe you or is asleep while you’re talking to him/her, then change doctors-Politeness can go out the window in my opinion even if your family have been with this doc for generations. You really need good doctors to make the right steps

Nurses are always amazing but they don’t get credit

I look back to how I lived before I got the SCS and I know for sure I could never go back to that life, I really can’t believe used to live like that. I went from not wanting to wake up each day to manageable chronic pain day.I still have chronic pain but I control it-It doesn’t control me…

Was getting the SCS a walk in the park? No, not all. The physical/surgical pain was OK but the mental torture of the trial was the hardest as I knew this was last chance saloon for me-Everyone is different..

I have great parents, family and friends who made it all easier and I honestly think I’d be six feet under if it wasn’t for them-It was heartbreak for my parent s and family to see me the way I was living, just lying there a lanky string of bones and skin. I think this is something only family members who have chronic pain can see. Its impacts not only the chronic pain victim but the whole family and the guilt that comes with what you’re putting them through is torture. I wanted to get better for my family rather than myself most times because having a sick child is one thing but having a chronically sick adult 2 bedroom doors down is like a filthy un-seen virus that’s unspoken about and when it is,it just leads to arguments over doctors,appointments etc.Its draining for all concerned

I do have different outlook on life. It puts in more into context I think a lot more, maybe too much now just about life itself and what it’s all about….I definitely appreciate others more than I used to which isn’t hard. I look back and think one innocuous fall in a split second caused all this and think why I but then I look around at others who have had the same spinal injury and think thank god I’m not that bad-I could be worse…

I can do just about anything physically now and I’m fairly stubborn and maybe that stopped me going mad or maybe I am mad..Mmmmmmmm

323d8ade9ea64fe52f3dd4507988c4b1No but seriously chronic pain and isolation can rip your soul away, especially at young age. My coping mechanism was to watch as much news as possible to see that others are worse off than me.I still do it.I know it’s odd but it’s what I done to cope.Ive never told anyone that because it sounds terrible but that’s the truth, I don’t get a kick out of seeing others worse than me but it puts my life into perspective. I don’t know everyone had their own coping mechanism, I guess it’s better than a bottle of whiskey a day. I was always stupidly optimistic for some reason

If I could change one thing it would be to just stop pretending I wasn’t in agony and to admit to the agony. I think it’s something everyone does but in the health service in Ireland at least if you aint got the dough, seems best to kick up a fuss, a big fuss to be heard but that’s not me although I would do it if I had to go through it all again

It’s hard sometimes. Friends have moved on had kids, gotten married and I still act like im 21 before I ever hurt my back. I still don’t act the way I used around them and that’s down to the pain I guess, others may not see it but its different in my head.I can be in agony from the day before for whatever reason and to go to some friends party etc and the fake smiles and the “ah ya,im grand” starts again when in reality im in agony and don’t want to be there.

6a897af297b10f218a8b3f936e5cf136They don’t understand,they try.I don’t expect them to-I wouldn’t if I was them.I can be all “happy go lucky one day” when out with them and in fairly full on pain for the next week with no sleep,that’s just chronic pain-Its a juggling act.Sometimes the pain is self inflicted-I know my limits and I should stick to them(and wouldn’t change them for the world) but as i said sometimes I act in a way that I did when I was 21…I certainly aint 21 anymore but what can I say……maybe one day ill grow up,hopefully….Im sure anyone who’s in my position with chronic pain can relate to the above.I’m just happy to have kept my friends,i know from others I have met who have chronic pain “friends” have disappeared on them-Not cool……….

Will I ever be the same through the whole journey from first injury to now? I doubt it, actually I know I won’t both positive and negative.But the SCS and having control over my pain and living again is all positive…….

One thing I do know is I’m so grateful for my family especially and friends. Will I have the balls to show it or tell them, I try, it’s hard especially with friends but I should with my family-It’s not hard for family surely.To be able to sit and eat with my family and go out and watch a match with my friends is still to this day amazing for me.I thought the “OMG I can sit and do all these things again” would  subside-They haven’t and its better like this,makes me remember how lucky I am i suppose

Can’t believe I’ve said all this. Good luck to all who are starting their journey, success or not-Good Luck!!!

And a thank you to all who have helped me-someday i hope i can repay the HUGE DEBT you have done for me….

If any non-chronic pain suffer is reading this try not to sit for one day and just see what affects that puts on the rest of your body, then imagine that for four years and you may understand when the simplest thing is taken away……..but anyone reading this will already know with their own problems I hope this site and this page especially helps others like others have helped me to see there is hope.

I also hope I haven’t come across as having a “pity party” which is my main fear here-Is life perfect no,whos is?my problems and others who have chronic pain are just different then others…

All I know is the world is now my oyster where as pre SCS the world and all the oysters just passed me by while I lay on a bed looking out the window…..day after day after day after day…

**If your like me 2 years ago and close to thinking whats the point of even getting up in the morning then don’t give up,an SCS may work for you and if not there’s some amazing pain doctors out there…trust me…

 

 

 

Contact me spinalcordstiminfo@gmail.com or leave a comment below

 

 

 

 

 

 

 

  • Pauline Power Burke

    Hi I would like to thank you from the bottom of my heart for going to the trouble of setting this information up for chronic pain suffers to read. It is all very informative and I have enjoyed your take on SCS …. Your account of SCS is very detailed and east to understand. One thing I would like to ask is about the assessment. How long is it? Does it depend on the answers you give if you are allowed to go forward for the trial or not? How long after your appointment with the doc did it take before you went for the trial? I think you covered everything else.
    Thanks again for all your trouble …. Best wishes, Pauline

    • Danspinestim

      Hi Pauline
      The assessment I think your referring to is the chat with a health psychiatrist.There are no right or wrong answers.Its only a 10 minute chat.It does determine weather you can have the SCS to an extent but its more educational,more for yourself to hear what an SCS its about and what realistically you can expect from having an SCS.Some people may think they will get 100% pain relief,its not a magic cure and all the assessment is for is for you to understand this.I would say ive got 75% pain relief and its changed my life but i wasn’t going into it thinking i would get 100% relief.The assessment is for your benefit.I really wouldn’t get caught up or worry about it…..It may sound like some big test but its not,just be honest and youl be fine..

      As for your question about how long waiting?It depends on insurance etc but shouldn’t be too long after the assessment as this is the start of the whole process

      Take care and ask as many questions as you like

      • Pauline Power Burke

        Thank you Dan … I do know I will not be sure any pain relief, so I am going into think with my eyes well open.
        I appreciate your honesty!

        • Danspinestim

          No worries,i just hope this site helps others instead of seeing all the negative stories on the net.Is it easy?no….but you may hopefully get there as i have,there’s no reason why not………

          • Pauline Power Burke

            I have a positive outlook so hopefully it will help me. There are too many people telling horror stories and stopping people go forward for the trial … I know your very detailed and honest information will help many Dan. It is the honesty I like the most in your writing. Thanks again

          • Danspinestim

            Hi Pauline
            You have to go into all surgerys with a positive attitude.Im glad you like the honesty,bit embarrassing for me to write about myself because I hate doing so it but I hope the honesty will help others in a way I would’ve liked to be helped.Its no picnic as I say but the internet horror stories are all negative.You very rarely see people on youtube etc smiling with joy saying “My SCS worked”,there are a few positive videos there but the doctor is practically holding the patients hand….

          • Pauline Power Burke

            Hi Dan,
            I haven’t looked at youtube and I don’t want to either, as I am in a good place now mentally so I will not read any more negative stuff about SCS. I know that some people do have a bad time and it’s no picnic but I also feel some doctors do this surgery before everything possible is tried for the patient. I heard of people going for this without going through epidurals, nerve blocks, steroid injections, botox injections etc etc so this is bad practice. Anyway I’m very glad it has worked for you Dan and I hope I will be saying the same thing this time next year. Thanks again x

          • Danspinestim

            Thats Great Pauline-Glad to have helped you a bit
            I hope it all works out for you
            Let us know
            Take care

          • Pauline Power Burke

            You have helped a lot more than you know Dan … I will let you know as soon as I hear anything!

  • Brian miskella

    Great site … Fair play dan

    • Danspinestim

      Thanks Brian-Hope it helps

  • Sarah Powell

    Thank you so much, great, honest and written so informatively, so helpful. I’m waiting for scs, have my meeting with the psychologist in two weeks. I’m also not taking any pain medication and I’m pretty much restricted to doing very little at home for now. It’s a whole, New, scary, exciting experience! So good to read your story, thanks for sharing!

    • Danspinestim

      Hi Sarah
      Thanks for the kind words……….
      Its definitly a whole new,scary,exciting experience you can say that again but hopefully youl come out the other side feeling like a whole new person,physically and mentally and get your life back….Sorry your feeling restricted being off your medication but a whole new world awaits you so i hope you stay strong until then…..Good luck with the psychologist in two weeks and your trial shouldn’t be to long after that so if you have any questions feel free to ask them here or email me….

      Best of luck and please keep us informed of your progress

      Take care…

  • Sarah Powell

    I never thought a year ago that I would be here in this situation and drug free, I would have been terrified! but it has really changed how I view pain, coping and life generally, its all been a huge learning curve, tough but amazing in that I feel ive really had to learn who I am and how strong I am to cope everyday. Its been inspiring to read your experiences and today I feel hopeful and excited! Thank you for being an inspiration. Thank you for your kindness and for being there, sharing is so very important, and im sure there may be a couple of freak out moments during the trial when I email you! Im going to keep it on trial as long as I can, I think my centre is a minimum of 11 days. The real worry for me is going to be keeping my arms low with no bending or twisting, I may have to buy some heavy duty tape to go around my whole middle arms included! Thanks again Dan 🙂

    • Danspinestim

      Freak out moments?-Ive had plenty of them and so did/will everyone else getting a SCS :)…11 days sounds like a good plan,seems you’ve it thought out pretty good…..i hope you stay strong during the trial and don’t hesitate to email me….

      Best of luck and i look forward to hearing your success stories…you can do it!!!

  • Shastwell1216

    Dan, i don’t know if you remember me Stephanie H from FB, we chatted a few times a few months back. I hope you are still active with this page. I have referred those looking at SCS here as it was such an important tool in my decision. I just wanted to drop by and let you know that finally after several months of complications and insurance runaround, I Will finally be getting my Implant on Monday! Hopefully it will all go well and I can pop in with a success story!

    • Danspinestim

      Hey Stephanie,of course I remember you-Hows things?

      Going great judging by your post….Happy days!!!…Loving the positivity…………

      Yes still very active with this page every day so drop me a message here anytime and ill reply ASAP

      Delighted that the insurance company has finally approved you….they can
      be a nightmare at *times…. *always ……:)

      Good luck with the implant on Monday,really hope it goes well for you
      and you can get some pain relief and ill be here waiting for a success
      story of your own!

      Good luck again and stay strong for Monday!!!!

      PS-Thanks for referring people to this site-Its keeps the site
      relevant and your story or anybody else ‘s is more than welcome here
      when with hope the SCS works for you and we will all learn something new
      from each other………….

      Best Wishes again………….

      Dan

  • Georgeok

    Hi Dan, thanks so much for sharing your experience. It’s really informative for someone like me who is starting their SCS journey!

    • Danspinestim

      No Problem Sharon

      Hope all goes well for you and hope you can come back and share whatever the outcome of your Journey-Hopefully with much pain relief whether with an SCS or not………….

      Best Wishes again…….