Punk265 replied the topic: Introduce Yourself Here.....
I hope this message finds everyone doing ok. I don't really know what to say but I have been checking out the website for quite some time & feel comfortable to now introduce myself. I am not looking for anything specific on here, just interested to see & hear what like minded people are up to & to have a support network external to what I already have.
I am recently 28yrs old & have been suffering back pain since a bad horse riding fall 11/12yrs ago. I have been able to manage the pain & flare ups enough to keep surgeons at bay (by keeping fit, a great physio & GP, meds and a few other methods) until March last year. The first op I agreed to was a "simple" discectomy which caused my sciatic nerve to go ballistic (L4/5, L5/S1), prior to this I had worked full time in a physically demanding, rotational shift work environment. Since this op I've had 7 procedures, 12wk stay in hospital due to severe, disabling pain & another op just around the corner (& I haven't been able to return to work since 16 May last year). The main pain is from my nerve which most of you will know, they can't (or won't) give any answers as to why it is the way it is or what caused it (surgical or other) & any long term prospects (other than at best I will still suffer the paraesthesia).
My pain dr, neurosurgeon (not the one who conducted first op) & GP are amazing and I have a very supportive boyfriend who has also been to hell & back on this journey. I have an employer who has been quite good so far, however I am concerned about my prospects of returning to work & finding subsequent income sources if this occurs?! I have debts, like anyone, that I can't afford to not meet - what have others done in these circumstances? I have had to sell all my horses, which has been awful to say the least & obviously had to make many other changes to accommodate my current situation. I rely on crutches or a wheelchair to be ale to leave the house - far cry to the fit, active person I was 12mnths ago!
I know that most of you have probably been dealing with CP for a lot longer than 12mnths & I have too to be honest, it's just up until 12mnths ago I had been able to "manage" it - where now I have no option, I am in a level of pain 24/7 & have lost my life as I knew it.... Anyhow, I choose the view that 'it is what it is & I can't change it. I just have to accommodate & learn my new limits'. I know it will be a long, unknown journey & that is why I've reached out to you all!!!
I have had other previous surgeries & illnesses & suffer food intolerances, polycystic ovaries, herniated discs, scoliosis & the list goes on.... But that is probably enough for you to read initially! I look forward to participating in other forums & seeking advice
Peripheral neuropathy/CRPS/Chronic pain
Keep ticking off the attainable by focussing on the 'Can' rather than the 'Can not' in your day.
Mary replied the topic: Introduce Yourself Here.....
Hi Punk265 and welcome. You have certainly had more than your share of problems, particularly in the last 12 months. I am not a doctor but I wonder why they have continued to do procedures on you when they are obviously not helping. In fact, its sounds as though you are getting worse each time. I was in a similar situation to you in 2004 after a fusion at L5-S1 and a Wallis implant at L4 - L5. I did a lot of research at the time and I read in more than one journal that there is no evidence to support subsequent spinal surgeries after the first one has not brought the expected relief unless it is an urgent situation. This is obviously a controversial area as some people are having many procedures and are no better off for it.
I was also fortunate enough to have a neurosurgeon who refused to operate on me again as there wasn't anything that appeared to need to be done on my MRI. In hindsight , I guess I was very lucky. I still have the same pain that I had but I have learned to manage it reasonably well and I only take Lyrica for nerve pain.
It is so sad that you have had to sell your horses. I can only imagine how awful that must have been for you. I hope that you will be able to reach a stage where you can ditch the crutches and wheelchair.
You will find a lot of support here and if you need to talk, or rant, please feel free to do so at any hour of the day or night.
All the best,
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
kebsa replied the topic: Introduce Yourself Here.....
i will say nice to meet you but i am sorry that you have a need to be here if that makes sense. I think many of us can relate to having had problems for a long term that you cope with one way or another but eventually have to admit, that you can't anymore. It also sounds like you are not expecting miracle cures, just ways to manage things so that you can get on with life- that alone is a step that can take a while for many of us- the sad thing is that it is more a cse of management rather than cure in most cases
you mention concerns about how well you can manage you job, and i am assuming it is not a work over situation- have you heard of the commonwealth rehabilitation services, quite some yrs back they tried to help me with a jobs at jeopardy kind of program - if you have a sympathetic employer, they may be able to come up with some support for you and your employer. it worked for me for a while but eventually i ended up on the disability pension. sadly i did lose my home but was able to access my superannuation funds on financial hardship grounds and that helped a lot. ever the yrs i have still worked part time and am about to start a new job now- i voluntarily enrolled with the disability employment network and basically as i am in a wheelchair ( i have MS as well as being an amputee) they have helped me approach prospective employers, and tell the employers how they can support me and the employer with workplace support and modifications. they are in the process of getting a height adjustable desk fitted and an access ramp, and as i will be alone in the building on a night shift, at the beginning they will fund someone else as a support for me in case unforeseen problems arise - thats more for the employers peace of mind. funny thing is that while getting home care and home equipment is tough- these programs to help people whose jobs are in jeopardy or who have lst jobs, work quickly, they an also help fund re training. so those are 2 places i would be checking commonwealth rehab services and centrelink, disability employment network
the other thing that comes to mind is the courses that many pain clinics run where they help teach you the skills to le\live with you situation and cope better
there is also the chronic pain toolkit (
) that you may find useful
and someone here also gave me a phone number for the
PainLink helpline 1300340357 which is managed by the Australian pain management association
hope some of this may be useful, just remember there are some very knowledgable and supportive people here an while it sounds like you have good support sometimes it good to being able to bounce thoughts off of, or even just have a rant, with other who have lived with chronic pain- this is a great site for that
grappers replied the topic: Introduce Yourself Here.....
Hi and welcome to the forum Punk265, wow, I too have a damaged back from a motor bike accident which led to two operations, well the second was to remove bony growths going into my nerves and try and make a bit more room for the discs to go back into place, which did not work anyway, and that was all they could do because of bad scarring around both affected areas, I did go through all the initial stuff like physio, cortisone injections and nerve blocks, when all that failed surgery was the last option, this all happened over a 3 year period. Then came the drug trials as the sciatic pain became unbearable, only to find I am intolerant to all but one medication. The end of last year I also had a spinal stimulator implanted, 2 leads and not paddles, legacy of sciatic problems is weakened leg strength and foot droop and rely on my cane for support, mainly for the back spasms that strike without warning as my leg lets go at the knee.
If I had my life over again surgery would never be an option as this has left me worse off than just dealing with the initial pain from the accident, foresight would be wonderful. My point is if surgery hasn't worked don't keep going back for more, there comes a time when the scarring caused becomes more of a problem than the initial injury and that causes more pain as nerves get tangled up with it.
I would recommend talking to your pain specialist and ask to be referred to a multidisciplinary pain management group where you are taught skills in living and dealing with pain, medication alone is not the answer.
Peter replied the topic: Introduce Yourself Here.....
Hi Punk265, you finally made it in I see.
Boy have you been through the mill. I'm glad when my neurosurgeon told me back in 1997 that I had no disc at all in my L5/S1 joint and that it was to be fused, but he didn't want to touch me, because it would be better to let it happen naturally. I wasn't going to let anyone operate on me anyway, so i took his advice and let it happen. It has been a painful journey, but the pain is now controlled by Lyrica and I don't normally feel too much serious pain in my lower back, unless i have done something stupid.
If ever you feel concerned about these operations, it is never too late to get a second opinion. I guess you know your body better than us, but always do the right thing by yourself and research everything and ask a million questions. Don't just automatically say yes.
I'm glad you find this place supportive, because they are a pretty good bunch of people here.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)