Losing it

[reAllytee]

Well i dont know where to start this. :(
Guess i better give a run down.
My partner many years ago had spinal surgery this was due to a scoliosis which was never corrected & was then allowed to break ( tops parenting but thats another issue ). He now has two metal rods in his back which not only are a source of great pain in themselves but make it very difficult with movement etc. So when we met i knew of all the risks involved as in he could possibly end up in a wheelchair. So i made the decision back then that i didnt care as i loved him & would stand by him & this still goes.
Its just really hard of late as its slowly been getting worse ive been trying to get him back to the doctors but he is scared ( and like im not ?!?!?! ) last time ( 5yrs ago ) meant he was overnite in hospital as he couldnt pee even though his body needed too !!!! sorry about TMI this proceeded with them trying to give him an MRI !!!!! luckily he knew he couldnt have one due to the metal. He was given a CAT scan & xray to which the found a bone chip floating in his spinal column they told him how it could be the prob but they dont know & warned how it could sever his spinal cord at any stage to be wary then sent him home with a panadol !!!!!!! I finally got him to the doctor today as he didnt sleep last nite & couldnt even raise his arms this morning let alone brush his teeth, he cant pick Harry up let alone help me out with him or anything else around the house.
Basically the short of it is that there could be a number of things causing his current state of ill health, including:
- The loose piece of bone in his spinal cavity which was previously diagnosed may now be lodged in the upper part of my spine
- The fusion of the bone & steel may have created a mass of scar tissue which is preventing movement
- The steel rods in his spine may have moved out of place
- The steel rods may have bent or fractured
- A whole bunch of other things including the bad end of the scale of cancerous tumors, partially severed spinal cord, or shattered/fractured vertabrae.
Now dont get me wrong i know there are people out there coping with either just as much or more so im not trying for sympathy i just want to get it all out as ive been swaying from wanting to cry over it all to having a screaming fit. Ive already snapped a few times at my partner & even had to walk away from Harry during lunch as he decided he didnt want to eat but i should wear it & i cant say im keen on wearing yoghurt :o
Im just angry & upset with it all & i feel like a 4yr old wanting to throw a tantrum throwing my arms & legs around screaming its not fair over & over.
Sorry this is so long & sorry for my little tantrum on here hopefully i will feel better tomorrow.

[the_queen]

I don't have any advice, but I just wanted to send

(((((((((hugs)))))))

to you and your family.

[xkwzit]

Allyoo

I'm sorry that you have to be going through this. It truly sucks. Hopefully the docs can work out what the prob is and get DP better. At least you're all doing something to make it better - you couldn't go on like you were.

((hugs)) to you three and take all the help you can get from ppl. LEt us know if we can do something for you.

Cheers

[Jaileth]

Allyoo - hang in there!

No advice honey, but you're a strong lady, and you will get through this (even though it might not seem like it now)

Take care and lots of hugs to you!

[WeThree]

hi im sorry that you and your husband are suffering in this way. it must be so hard on both of you, you because you have the extra load of caring for him, bubs, the house etc, and for him as well, he must feel quite depressed and useless, men can be funny about things like that. try and keep your spirits up, and like the other girls said, dont be afraid to ask for, or accept offers of help. :)

(((HUGS))) :)

[reAllytee]

Thanks everyone ive been trying to stay positive with it all by putting up Christmas decorations !
And when Harry wakes from his arvo nap we will be taking piccies with him for gifts to family.
Guess im trying to ignore it all for now i just want this to be a greta Christmas especially as this is our first as a family.
If we get bad news then so be it but i wont let that take away from this Christmas.
:)
Guess i just need to relax & realise i may have to ask for help.
Thanks again everyone
:)

[lukaelmo]

You cheered me up when I was ali no mates.


Biiiiig hugs for you and hubby xxx

[reAllytee]

Thanx Ali !
He had scans & xrays done yesterday so is about to go pick them & the reports are so depending on if they stuff him around he may not even be able to see the doctor today !!!!! so we will then have another day of anxious waiting *sigh*
He had the doctors at the imaging place nearly falling over themselves to have a look at his scans heh least he is popular :p
Shame it now looks as though his job is on the line now.
Im trying to keep occupied etc as i dont want to think about bad things as its almost Christmas !!!! and Christmas is meant to be a fun & happy time of year !!!!

[Mummy-2-2]

Oh my goodness! What a brave person you are :o

I have just read this thread and want to wish you all the luck in the world, and I am asking all the "gods" I can think of that may be able to help, to help you right now.

please keep us updated.

lots of love to everyone.

[cosmic]

Ally, do let us know how you go with the doctor. It's a bummer (to say the least) to have this happen at Christmas, but at least he is finally seeing someone about it and that is a great step forward. Bloody men and their aversion to doctors! :rolleyes:

And I think it is important that if you need to cry, CRY and if you need to have a tantrum, HAVE ONE! Holding those things inside does you no good if you're not good to you, you're not good to anybody. Hang in there. ;)

[reAllytee]

Ok now i am angry like really angry :mad:
We got the scans & xrays back we manage to rush to see the doctor before he left for the day auuugh !
He didnt even look at them !!!! WTH !!!!!!!
Just read the report & gave him a script for anti-inflammitories & more opiate type drugs to which " we are to see how it all goes " GGGGRRRRRR !!!!!!!!!!!!
We then look up what half of this report meant as some of the words we couldnt understand. He has these growths on his spine which is what happens when the spinal tissue is dying & usually only happens in persons older than 60yrs of age so this means vertebrae which is affected is disintergrating (sp?) !!!!!! And he has problems with some of the vertebrae looking swollen & a little odd if thats the easiest way to put it.
Ok yes we at least arent stressed any more about the cancer part or there being a broken vertebrae or rod but that still doesnt meant there isnt an underlying issue.
Honestly i knew we shouldve gone straight to a specialist as gp's as much as they can be great tend to have no clue on harder cases.
I swear if he takes these anti-inflammitories & it stuffs him up i will scream !
And of course what makes it worse he is being all "oh im the man its all good i will just grin & bear it"
Bloody men !!!!!
Bloody doctors !!!!!

[melfunction]

Ally, my heart goes out to you and your family..

I too have scoliosis and 2 herniating discs in my lower back. Disc degeneration gets worse as we get older too. I was also prescribed anti-inflammatories and opiates, both of which don't help much..

I had a dicussion the other day with a family member and his friend had seen a wonderful Dr in Sydney. Apparently, they put a titanium disc in his back and although he still gets some pain, he is nowhere near at the incapacitation he once was.

I am at the stage that I may try and see this Dr myself. He is at a private hospital at St Georges, I think. Can't be too sure. Will have to ask my friend again.

I hope you are able to relax a bit over xmas and as wise cosmic says, cry if you need to.

Keep us posted :)

[lukaelmo]

Ali I was bedbound on and off for about 3 years with an illness, and one of the worst things that I can remember about it all was the ******* insensitive doctors and specialists.

I would end up in tears after endless visits to specialists who when I got there hadn't even read my file so had no idea where I was at. Sometimes, even as soon as I went into their office, I knew that they wouldn't be able to help me.

Something important that I learned from this is that you have to be really tough and to push push push for answers, results, information - everything. I am the kind of person who just can't push, and neither could my mother, so in return I was kind of passed around and didn't know what was happening.

It was not until there was something wrong with my little man that I learned to push like buggery for help, and not just ask for it but demand it.

I think I am saying all this because now is a time that you need be be as tough as you can, and you need people to help you push. Sympathy is great, but sympathy won't get you far with doctors.

When I was in hospital with little dude one of the midwives even said to me "if you have to scream this place down, do it, unfortunately it's loud tactics that work best here."

And as for your hubby maybe losing his job, is that legal? I don't think you can be fired because you are not well for a while. But I don't know very much about that.

You be tough little chicken, you are an Alison and Alisons are great chicks.

sorry for the rant, but I feel kinda strongly about this

[valleymum]

SOmeone once said to me you are allowed to drop your bundle, but make sure you pick it up again and move forward.

You have alot in your bundle right now. And at times it must feel like you have two kids to look after. Just know that once thigs are moving forward again you will find some relief.

There is nothing worse than waiting. Everything seems to stop when you are waiting for big news. Hang in there and try to keep busy.

My heart goes out to you and your family. And I will pray for a quick solution and recovery.

Take care
Valleymum

[JnA]

Hi allyoo,

First of all *hugs*

Secondly go and see another doctor. There is absolutely no harm in getting a second opinion, another GP may have more knowledge about this particular area than the one you are seeing now. Or better yet, ask your doctor to refer you to a specialist.. don't take no for an answer if you need more information. Remember - you are paying him.. he is your employee (granted a very intelligent employee) but none the less, he should comply with what you want.


He didnt even look at them !!!! WTH !!!!!!!

Sometimes GP's cannot read xrays very effectively.. that's why there are reports by the radiologists etc.

Thirdly if you feel like screaming - do it. It is a great way to release your frustration at the situation. Cry. Crying is not such a bad emotion when it's called for - in this case, it's called for.

Fourthly if you like, you can pm or email me. I watched my partner break his neck and go through all the trauma of rehab and the resulting wheechair boundness. We are still together today (almost ten years since his accident) but I have been though all the emotions you describe and then some. As well, I have been his emotional support for his 'stuff' too. I'm not sure if we have come out the other end yet (or ever will) but we are in a much happier place now. I am more than happy to be a truely sympathetic ear or advisor/friend on dealing with spinal injuries. The offer is there if you need it or want to take it up.

Lastly - take care of you.. and enjoy your Christmas.

[Manxie]

Hi Allyoo

What a tough time your going through - big hugs from me.

I just wanted to say that I agree with all the comments here about being tough and pushing to see specialists and get answers etc. One of the motivating factors for me to become a nurse was that I wanted to know what was going on when my father was sick. Unfortunately it is the ones who shout loudest, get s***ty etc that get the results. Be brave and demand to see someone who knows what they are talking about, try and find out the name of the relevant specialist and ask for a referral to them, the g.p. will know you are serious then.

Why do drs always throw anti-inflammatories at you when your back is buggered- I never have got the logic of this - your body is providing an inflammatory response because there is something wrong - taking anti-inflammatorys is just dealing with the bodies response and not tackling the underlying issue. I'm not saying dont take them but I dont see it as a long term solution, they need to find out what is causing the swelling or else the cycle will start again.

Drs tend to take you seriously if you go armed with a lists of questions and you write down their answers!

We have just had to push to see a paediatrician with our little girl, my g.p. had made me feel like an idiot for even raising the problem with him but due to lots of pressure from my DH I went and saw another g.p. and got my referral.

Hope this helps and Best of luck :D

[reAllytee]

One of the problems with it all is that because this has a work issue with it atm it means that because the gp said he is fine to go back to work & to take these anti-inflammatories for this week to see what happens it means if we then go onto another doctor it means we are undermining him & dont have confidence rah ! So we have to wait luckily Sunday is when he can either go back to this same doctor or elsewhere. Im pushing for elsewhere but my partner being the stubborn male he is will do what he wants no doubt. I have tried to go in with him to ask questions etc but he refuses as he wants to handle it himself rah ! I know he just wants it so i dont stress but its hard when we arent getting any answers as this makes me stress more !!!!! Bloody men !!!!
Our other problem is the specialist who did his original surgery is already on holidays for Christmas .... bad time of year to get sick etc *sigh*. But im trying to push my partner to go to Prince Of Wales over in the eastern suburbs as they have a spinal unit & this is one of their specialty areas. So i of course only want the best looking after him plus they actually know more than the average doctor due to this.
Im worried what could happen with the anti-inflammatories cause you hear of horror stories where they are given only to take the swelling down so let the underlying problem take over where something say breaks or goes wrong ! I know he doesnt have any breaks but geees the swelling is where the scar tissue is from the harrington rods which says something to me plus the fact his 3 remaining moveable vertabrae are disintergrating oh yeah sure we will leave that no biggie !!!! UMMM HELLO !!!!!!! Im wondering whether they actually care whether he ends up in a wheelchair cause it certainly doesnt seem like they do.
Our other problem is that even though he really isnt fit for work he has to be as we are struggling monetary wise & as he used up all his sick leave earlier this year when he got the flu bad when he takes time off he doesnt get paid so when he had the 2days off earlier this week it meant we are approx $600 down rah ! not exactly what we need when its Christmas, have a mortgage & bubs !
*sigh*
Im just ranting & taking my frustrations out again so i will leave it there for now

[reAllytee]

Well i did convince my partner to go to POW hospital before Christmas to which he was put onto endone & advised to get his doctor to refer him back to the spinal unit. Why cant they do that when your there is what confuses me anyways at least the doctor who saw him was really lovely & helpful. She said the best course of action for now until he got into the SU was for him to get his pain managed so in turn was prescribed arthrax & endone. Endone being the drug mostly used for cancer patients who are terminal so yeah i remember going through all of this with my dad eg. the highs & lows basically he is drugged to the eyeballs with it taking the edge off his pain.
He went back to the doctor to get the referral to have him rant & rave that he shouldnt be on endone blah blah & no im not sending you to POW they are pathetic ! WTH ?!?!?! So instead sent him off to physio :mad:
The physio of course was disgusted at his physical state as he has diminished muscles in not only his back but chest & neck due to his back. He was also disgusted to find out the rods had never been adjusted !!!!!! My partner was never EVER told this !!!!! Apparently when they use these rods because the patients are only quite young & still growing they have to adjust them over time so being that the surgery was done when DP was 16/17yrs old & is now 24yrs old & had no adjustments whatsoever is great to know. I shudder to think whats going on with his spine :(
Anyways he has been doing physio twice a week now with no added benefit in fact he has been sent back to the doctors with a letter stating that he is actually getting worse & that something else is wrong possibly that he is outgrowing the rods etc. He is losing all of his reflexes which is comforting :(
The latest doctors visit concluded that he is to try to see a neurosurgeon asap which is a bit hard when they are closed during this period in time & have a nuclear bone scan (which is nasty mind you) with still no referral back to the spinal unit at POW. Oh & the endone no longer works yep thats right folks the high end opiate used to keep cancer patients happy in their final days is no longer working so he now can hardly sleep let alone function through the day even when drugged to the eyeballs.
Oh & just to add to our problems we are paying for all these visits out of our own pocket because his work are being pathetic when he has to get this NBS done we have to shell out something like $800 for it !!!!!!! Yep great especially when we arent even getting a paycheck now either *sigh*
Honestly im just so over everything.

[Michele Crocker]

Hi,

Just writing to say Lots of hugs. Sounds like you have been going through hell and back. Sometimes doctors are the pits. Have you been to centrelink to see if they can help out while your partner is not working. If not I would be trying to see if they can help out while you are struggling to pay the bills.

Michele
Mother of Christopher, Luke, Melissa, Jayden and Ashleigh(2 months old)

[Manxie]

Hiya Alllyoo

Sorry to hear that things arnt really getting any better for you & your partner.


the endone no longer works yep thats right folks the high end opiate used to keep cancer patients happy in their final days is no longer working - I had endone post my c-section and its also the pain killer we use for post cardiac surgery so its not really that hardcore:rolleyes: perhaps they need to have a look a some other form of pain relief.


He went back to the doctor to get the referral to have him rant & rave that he shouldnt be on endone blah blah & no im not sending you to POW they are pathetic ! WTH ?!?!?! So instead sent him off to physio - time to change gp?

I never had much joy with physio for my back injury in fact they often made it worse:( At least they are putting some pressure on the gp for you.

Anyway just wanted to say be strong and keep on pushing it will be worth it in the end even if it seems impossible. Eventually the g.p. will get sick of you and just give you the referral to get you of their back!!

Good luck