Herniated disc, Chronic Pain

keira143 · 23-01-2013 6:24pm

alie wrote: »

Hi , thanks for the kind words, we have gotten as far physio for her which she has every 2 weeks as most of her pelvic muscles have collapsed , we are on an emergency list since june of last year to see a consultant, the waiting lists are so long in Crumlin , its mad, I have bought Ciara a heat pad too which she uses in the house, the cold weather does not help. She takes Loseac to protect her stomach too. My G.P doesnt know how to treat her pain as he never saw a child with this condition , may I ask what opioids are? She can only walk for 40 minutes at most and uses crutches and a wheelchair, the pain is increasing and she feels miserable all the time, she was initially diagnosed with growing pains 3 years ago , I changed my gp! She had an MRI last April which showed one disc gone and one bulging towards her pelvis.

Dear lord she has been threw the mill!!! Well done on changing GP.
Opiods are narcotic pain relievers i.e- morphine - highly addictive & may cause symptoms of vomitting/drowseness/hallucinations etc.. which you could obv not give a child!!
Thats the emergency list!!! INSANE!! its a year wait for me in galway emerg list. Are you calling your consultants office every day??? or get onto a local T.D & try to get a case made, just bring all her medical information to local T.D and he should hurry process up for her...It does help if you know the T.D of course, but if not no harm trying, you have nothing to loose but a whole lot to gain. This has worked for a few people I know. I will also be doing this if my op is too expencive privatly as I cannot wait a year.

alie · 04-02-2013 5:18pm

Hi Keira , we saw arrogant consultant on Friday , he was in theatre when we arrived , waited almost two hours to see him , he did,nt even change out of his scrubs!, he dissed everything the physio said and asked did i want a magic wand? Wont repeat what i said, we are in pain management clinic tomorrow, and see a new physio that deals with spinal injuries, she is now on difene too

flutered · 04-02-2013 5:33pm

alie wrote: »

Hi Keira , we saw arrogant consultant on Friday , he was in theatre when we arrived , waited almost two hours to see him , he did,nt even change out of his scrubs!, he dissed everything the physio said and asked did i want a magic wand? Wont repeat what i said, we are in pain management clinic tomorrow, and see a new physio that deals with spinal injuries, she is now on difene too

difene is a bitch, it eats ones stomach, also over a period of time it causes a blocked bowel, be very alert with this stuff.

keira143 · 10-04-2013 1:14pm

Alie Im sure you gave him a piece of your mind after that comment, what a w#nk#r!!!Magic Wand!!! I know where id put the magic wand if I had it!!!
Aside from him how did the new physio go? Is the deifine okay for her..I suppose nothing is helping, a bit like myself. My GP too me off my pain meds as he feared I was on them too long...nothing to replace them!! Its so hard to cope when they wont take you seriously & understand how chronic it is.
K

alie · 17-04-2013 12:56pm

Hi all , just an update on Ciara , she is in so much pain , its incredible , also suffering neural symptoms now too , she attends the pain management and physio every two weeks , also waiting on OT, and counseller, we were back in the hospital on Monday for an emergency appointment, they are to redo the MRI next week , shes now on loseac for her stomach, and can only walk for short distances using crutches. The registrar thinks she now has a prolapsed disc at the S1,
Keira how are youy getting on , you were in my mind all week?

keira143 · 05-11-2013 4:48pm

Ive had the Surgery at long last....
I was admitted to A&E by ambulance for trying to get my sons lunch ready for school (bent down nerve completely trapped &was glued to the ground. no amount of gas&air or morphine eased it) sent home again of course & ended up back twice after that...

My surgeon blamed it all on the state of the country & the health system & it basically came down to money. sent on our way again along with my dad being given a long list of people to contact to make a fuss to get my surgery. seconds in the door and he was on the phone & laptop making waves....in the meantime I continually got worse & worse...

Two days later it came to breaking point & I sobbed to my family to bring me to A&E for pain relief.
After being given pain relief & examined & told yet again "There is nothing we can do for you, your being discharged" I was lying on the trolley in the hallway of A&E turned into the wall sobbing my heart out uncontrollably with images nobody needs to know in my head of what id do when I got home...

Next thing I feel a soft hand on my left ankle & hear a sympathetic voice. An Orthopedic Surgeon (not my'n) asking the reg that saw me what my story was, she told him briefly & she said i was going home. He replied "This girl has been through too much I'm admitting her until she has surgery". I can't describe my emotions ill leave it to your imaginations.

After that of course my surgeon was up against a brick wall & had no choice but to do the surgery. Hes not bad don't get me wrong, he was just fighting for more money to do these surgeries and his job must be awful frustrating all these patients in agony and no money to pay for what they need....surgery completed by I have to say a fantastic team & I felt safe in their amazing hands and I was.

Home now post-op...Zero pain in my leg WAHOOOOO!!!! Zero pain in my back UNBELIEVABLE!!! just wound and clips very raw and soar (its not pain though...I know what pain is now) as expected...cold/hot sweats body healing apparently. Just need to be patient & I'll get there...3 months from now il be doing my normal things again and a year down the road il be able to live a normal life of a well then 27 year old, all going well.

It just takes one person to listen/look/feel for you to give you what you need...their are plenty of good people out their like that surgeon that will feel your pain and help. All I can say is DON'T STOP SHOUTING and someone will listen. xxxx

wandatowell · 05-11-2013 4:57pm

I has surgery on my L4 In July. It was the best thing I've ever done. 1 month after I was running and Im back in training now. I hurt my back in OCT 2011 but I didn't start having sciatic pains until January of this year. This is when the sh*t hit the fan in regards to pain. I was in a heap for 7 months.

My GP was excellent, he was a rock that I needed. Fantastic person. My surgery was cancelled 3 times due to A&E admissions and eventually my GP just told me to report into A&E myself, which I did. It was a bit of a drama but damn life is good now.

Also you must be in a right poor state if Oxycontin isn't working. That stuff is strong.

Just seen the above post, congratulations! The feeling you get when you wake up and your not in agony!!! LOVE IT!!!!

alie · 06-11-2013 9:09am

Keira I'm delighted you someone listened at long last , sending hugs your way. Ciara is doing a lot better, she had two falls a few weeks ago, because of her muscle weakness her hypermobility is worse in the mornings and at night and her ankles and wrists are worst affected. She has a wonderful physio that specializes in spines and a down to earth O.T who Ciara adores. Also got a counselor who has been a huge help. We are still waiting to see the urology dept, been on the list since April. And back to orthopedics in December. Her back pain isn't that bad anymore. Thank god, however she has been told it is a life long condition, her last MRI showed 3 more discs affected and her spinal column is dry. So we still march on...Crumlin Hospital is now a second home and the tree in the chapel has many leaves from us.

Geomy · 06-11-2013 4:17pm

Im 38 now and had the IDET procedure when I was 26, I haven't looked back.
I went through a lot of pain, stress and anxiety.
If you do all your physio, doctor and surgeon recommends you should be alright.

Wishing you good luck for the future...

alie · 06-11-2013 4:45pm

In this country IDET is only available for over 18, s. P lease god they might bring something Similar in for children

keira143 · 21-11-2013 2:38am

alie wrote: »

Keira I'm delighted you someone listened at long last , sending hugs your way. Ciara is doing a lot better, she had two falls a few weeks ago, because of her muscle weakness her hypermobility is worse in the mornings and at night and her ankles and wrists are worst affected. She has a wonderful physio that specializes in spines and a down to earth O.T who Ciara adores. Also got a counselor who has been a huge help. We are still waiting to see the urology dept, been on the list since April. And back to orthopedics in December. Her back pain isn't that bad anymore. Thank god, however she has been told it is a life long condition, her last MRI showed 3 more discs affected and her spinal column is dry. So we still march on...Crumlin Hospital is now a second home and the tree in the chapel has many leaves from us.

It's so good to hear from you, I'm sorry I've been away from this for so long-no need explain why

You&Ciara have been in my thoughts & I lit a candle every day in the hospital chapel for her after my surgery (it was my Physio in my head to make it that far each day for her) I know that sounds real American Cheese but it's true

I'm delighted she has a nice down to earth Physio people like that make all the difference when your struggling to cope...I don't think they realise & also the rude drs/whole health system make it so unnecessarily extra stress & frustration..when someone looks at you & understands your at breaking point it helps u see hope instead of pushing you away time & time again. Keep all the positive, helpful people around you all as much as possible...
I remember when I woke up from the surgery I started screaming & screaming-it was like something out of a horror movie- just the sheer pain & fright of it all too. Anyway the anesthetist (after pumping me with requested pain relief)started rubbing my hair & hand, spoke softly & got me imagining myself relaxing pain free on a beach...yes ok it may be her job as I was about to have a severe panic attack & I was under her care...but it's the extra mile some of these people go, all she had to do was pump me full of drugs to sedate me but no she was amazing! It makes all the difference in the world xxx hugs all the way to you, Ciara & family xxx

alie · 13-12-2013 11:17pm

Hi all, we were back in Our Ladys today and saw a lovely surgeon, he is so much better than previous one, ciara is in a flare up again. She is in a lot of discomfort. He told us she has 3 bulging discs and all her discs are damaged, he will review her again in June, he explained the surgery and was excellent in the way he spoke to ciara. she is continuing with physio too .

keira143 · 07-06-2014 1:16pm

alie wrote: »

Hi all, we were back in Our Ladys today and saw a lovely surgeon, he is so much better than previous one, ciara is in a flare up again. She is in a lot of discomfort. He told us she has 3 bulging discs and all her discs are damaged, he will review her again in June, he explained the surgery and was excellent in the way he spoke to ciara. she is continuing with physio too .

Hope the last 6months have stayed on track with nice Physio etc. & that Ciara is as pain free as possible. Just wanting to wish you all the best for her review this month. X

alie · 17-08-2014 6:28pm

Hi Keira, we had a great review thank god, mr arrogant was so nice , it was a bit sickening, I was terrified they would transfer her to Tallaght, now she is 16 , however he has decided to keep her in Crumlin till she is 18 at least, she gets pain now and again and has to be careful. He will review her again in a year and if she has a flare up we are to go straight to clinic for pain relief injections, her physio and ot are fab, became firm friends with all of us. Ciara is a different child , thank god. Hope you are well , probably running after that toddler of yours , lol , love to you and your family, xx

Herniated disc, Chronic Pain

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