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spina bifida acculta and L5 parrs defect - unbareable pain

Posted , 3 users are following.

mummy_smid
mummy_smid

Hi I'm 24, have a spina bifida acculta along with an L5 parrs defect, I had a spondylosis repair almost 10yrs ago now, I was informed before the operation it was a standard procedure and that I'd go back to normal in no time, at this point I was 16, after the op it took me a week to even get out of bed, 8yrs on I have no feeling in my bladder, it can cause accidents, I am in and out of a wheelchair and use crutches to aid me to walk, I'm on codeine, paracetamol, tramadol(for when I hit my daily amount of codeine) amitryptyline, buscopan, zolmitriptan..I'm in alot of pain but I'm not ready to move onto morphine as I have a Lil boy who's nearly 4. This pain is unbareable and in therapy your taught to deal with things day by day but knowing I could be like this for the next 40yrs is tearing my head apart, I've avoided forums as I didn't want to meet anyone in my position, but I need to know if anyone was fixed or live a better quality of life than they used to, any advice would be appreciated thankyou 

1 like, 7 replies

7 Replies

  • frustrated61
    frustrated61 mummy_smid

    Posted

    I can say that I'm sorry to hear of your suffering and how young you are.  We get dealt things that have no rhyme or reason.  Seems unfair that  you being so young have difficult times that it interferes with your daily life and a life with your son.  I'm so sorry.

    As far as you "not ready to move onto morphine", etc.  I can understand that because it does affect how you will feel as far as daily ability to perform tasks, it does affect that, I'm afraid.  I've been there.  I'm on fentanyl and breakthrough, Dilaudid.  Since I've been on a gamut of  opiates, this synthetic fentanyl seems to have dealt with most the pain (not all and I don't expect anything could take away all the pain) but this fentanyl has given me some hope for a somewhat "normal" lifestyle.  I mean, I can drive while on this as it doesn't seem to be effecting any judgement or reaction time but the morphine definitely did that.  I'm on the fentanyl patches, currently 75mgs and 4mgs of Dilaudid for breakthrough pain, those doses can be adjusted to less than mine if needed.  I only take the Dilaudid as needed and when I do, I can count on it making me tired and unable to drive safely.  So, it's when needed. 

    I might suggest that your doctor "try" you on this as it's been so helpful with my pain (currently fused from L2-S1) and nerve pain down the left leg to the toes and from the groin of the right leg to the toes.  Also C 4,5 & 6 fused causing some stiffness and pain movement.  However, for the most part the C fusion has helped. 

    All in all, I've been on morphine, tramadol, codeine, amtriyptyline and suboxone and a few others that have escaped me. I use a cane, but did use a walker, and off that now, I do use a wheelchair or power scooter if there is a lot of walking involved as my back just isn't strong enough and it also causes my leg pain to flare up.  I'm happy to say, I'm off all the above meds with exception to fentanyl and Dilaudid for pain.  I am on neurotin for the nerve pain 600 mgs 4 times a day.  But I was able to get off the other meds.  Morphine and fentanyl are so similar yet so far apart as far as symptoms.  I can function on fentanyl when on morphine, I was like a zombie.  The Dilaudid or generic Hydromorphone does make me a bit sleepy so I take that usually at home and nothing is expected of me.  I could function with a child as far as sitting and reading to them, playing a game etc.  But driving, no, so it's reserved for extremely needed times

    I hope this helps with some direction.  And, mostly, I pray that something helps you as you're so young and your son needs you as you well know.  Please let me know what transpires with your care, thank you.

    Warm regards,

    Frustrated

  • mmegon
    mmegon mummy_smid

    Posted

    Hi,

    I am so sorry your recover was not a good one!  I feel very blessed.  I went to West Virginia University Hospital System in Morgantown, WV - Dr. Daffner did my 14 hour surgery.  I was not an easy 2 years, but I am doing very well compared to how I would be without the surgery.  i was scared and went to my church for constant prayer and help.  Without God I would not have been able to do it.  I prayed for God to find me the perfect surgeon.  I prayed for everything.... I was so scared, I had to... you know that has to be what helped me.  Where are you located?  I would be happy to talk with you more.

    • frustrated61
      frustrated61 mmegon

      Posted

      Hi mmegon ~

      As with most discussions, they tend to die down as people often either lose interest or want a one on one.  If it's at all possible, I'd like to read what is helping others and more important, what's helping mummy_smid.  Thanking you in advance.

      Frustrated

    • mmegon
      mmegon frustrated61

      Posted

      I have had to have 2 reconstructive surgeries.   They included metal implantations to stabilize my spine, bone graft, and cement.  What specifically would you like to know?

    • frustrated61
      frustrated61 mmegon

      Posted

      I've also been fused from a break in two places on the spine as well as the cervical.  I'm curious as to how other's are dealing with this situation.  Mummy, had interest in medications and I gave a few ideas but if someone else has something, I'd like to know as this also effects me.

      May I ask what the reconstructive surgeries were for?  My daughter also has scoliosis and wonder if anyone has had surgery to correct this?  And if so, what made them go that route?

      Frustrated

    • mmegon
      mmegon frustrated61

      Posted

      I had 2 surgeries due to spondylolisthesis.  I also have a little scoliosis.  Dr. Daffner did my last 14hr surgery, he is in WVU Hospital at Morgantown, WV.

    • frustrated61
      frustrated61 mmegon

      Posted

      Mine was at the U of M in A2, michigan.  Yep the surgeries were a very long time.  MAkes one wonder how the doctors can endure that much time on their feet and so on.  So, regarding the scoliosis, did they fix that area too?  My daughter has a lean of 2 inches or more to the right, she's always cracking her neck or back or something.  she's an athletic, running in marathons all over the country so she's always trying to keep aligned.  How severe was your scoliosis?  Just wondering because I'm not sure my daughter should try that route, operations. 

      Hope you're on the mend and finding yourself feeling better each day.

      Frustrated

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