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hi lisa, i am sorry to hear about your mom,s condition, ...

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hi lisa, i am sorry to hear about your mom,s condition, i have been about the same since the last posting, lots of back pain, and also hip pain when i stand for too long, in my case 5 mins at the most. i have learned to cope , which is all you can do, and have been on gabbapentin since the op, i take 2 x 300mg three times a day, they do sedate you but time alows you to re adjust to the high daseage. i also take codiene phosphate 30 mg tabs when pain is very severe. theese are great at night as they will allow you to get some sleep!

i use a surface cream lotion called fenbid, this is an ibuprophene based rub this also helps on the hip joints....i am strugling to walk but now i have the audacity to hold my head up high , get in the supermarket electric carts and have purchaced a posh walking stick!..i tried to hide my disability at first feeling stupid in an electric cart but now i love it!..you can whizz roung twice as quickly and are not in severe pain when you have finised the shop.

we need to look on the positives now and forget the negs, this is an example!..now i dont pay road tax, and have a mobility car! i can get discount in some places, i get on aircrafts first,you go to the front of ques in some places, like disnyland in florida ets!!...i know i would love to be working as i was 2 years ago but i know this isnt possable so we have to look on life from the silly angles i expressed.remember for every action there is an equal and oposite reaction, look for these and tell mom to look the world in the eye and go forward, i have lost count of the times i have swore at people who are behind me in stores cussing about slow doddering old so and so (me) in fromt of them iburophen is a great help lisa remember the joints are often inflamed and this reduces swelling on them so reducing pressure and pain. pester your moms doctor, and get the pain killers she needs plus all the aids , which i now have from social services, these are free and not means tested, ie..2 hand rails for the stairs, a hand grab to pick things up with to stop bending, hand rails for the bath and shower, bath seats, raised toilet seats , free shower if she does not have one, i cant get out of the bath..the list goes on seek free advice from social services occupational therapy unit....i will call back in later this year good luck to all, and dont be an underdog just because you are slightly less ambulant than most!

[i:13f66a8f65]This message was automatically imported from the original Patient Experience[/i:13f66a8f65]

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  • Guest
    Guest

    Posted

    Hi John,

    Thanks for writing back to me, I didnt think I woul hear from you, it was only by chance I had a look... Thank you.

    Well I got mom perscribed on Gabapentin 2 x 300mg and we had to up the dosage to 600, currently their not helping,there making her sleepy forgetful and slurs her words she is still in a lot of pain, However had a phone call today and they are getting her into hospital this Monday to give her an epidural (which because she hasnt had top ups in a while, now has realised thay gave her slight, only slight relief) I have now thou got her booked in with a private consultant 4th April 2007 with possible surgery for the end of that month, Dont get me wrong we cant afford it but when your mom is in this much pain money isnt an option, Im getting married September and I want her fit and well and running around, until we see the consultant we are under the impression she will need a deep nerve decompression and possible fusion.

    Well I have to say John your sounding brighter in yourself and I hope things work out for you, I cant advise personally I dont suffer what you do, the only thing I can say is there seems to be a lot of fobbing off and I feel unless you have this pain you can not appreciate how upsetting and depressing it is. Stick up for yourself demand what you want and dont leave until you get it, your entitled to treatment and medication.

    I will save this page in my favourites and check it often (normally on line most nights between poker and ebay ha ha, I will keep in touch !

    Kind Regards

    Lisa

    [i:850200cf18]This message was automatically imported from the original Patient Experience[/i:850200cf18]

  • Guest
    Guest

    Posted

    hi again lisa , and all readers! yes i have learned to cope and re-adjust to my new life! you have to realise if you cant work that sleep happens when you are realy tired, if i cant sleep at night i sleep during the day. time is only fingers on the face of a clock and darkness is only a passing phase on the planet, from which we shall transend in 10 hours or so. enough of the philosophy, what i mean is sleep when ever you want or can, their are lots of good programs on tv at night, and its good notto be ruled by the clock, i hope moms op, goes ok if she needs one, and its a success. i live up north where its grim!seriously i had a super surgen which i cannot name, and went into a hospital in the manchester area, i had high hope, for this op and wasent dissapointed, i have not deteariated at all, and have still the same mobility as pre op, only pain slows me down, i have , can you belive this..taken up flying model helicopters, petrol ones!.i have a good friend who does this and carries all the gear to the field, including a fold up chair to sit on, i simply sit and fly, usualy crash..so life can open up new windows for disabled people if we only look for them

    good luck and best wishes for the wedding, the gabbapentin does make you very sleepy and forgetfull, but i have learned to fight this and now it has no affect on me zzzzzzzzzzzzzz ! seriously best wishes and the best medicine is strong positive will power and a determination to enjoy every second dispite adversity.. bye john

    [i:59564199a8]This message was automatically imported from the original Patient Experience[/i:59564199a8]

  • Guest
    Guest

    Posted

    Hi John

    Thanks for your reply,

    Mom had her epidural today so hopefully that should giver her some relief if only for the week, She is seeing someone on the 4th April tho for possible operation I will keep ypu updated, this will be with Bupa not by choice just quickness really.Mom can walk with the helping of leaning on something like my daughters push chair for a little distance.

    How long was you in hospital for John ? we are being told that if she has this op it should take the sciatica pain out of her legs, but possibly not her back pain, which could also be gall stones ( she is seeing a doctor on the 5th April for this, day after her consultation for herback and leg pain) was this the same for you did it take the pain way from your legs and back ?

    Changing the subject.... I went to Breame last year and they have a huge get together there and fly planes it was very fascinating and shocking how fast they do go, lovely hot day and very interesting.

    Lisa x

    [i:df29cafb1c]This message was automatically imported from the original Patient Experience[/i:df29cafb1c]

  • Guest
    Guest

    Posted

    [b:84aa48da68]i too have spinal stenosis i also have scoliosys and kyphosis of the spine all of which has become more painful over this last six months. medication; well!! we just get more pills which really dont help for long.i go to see surgen in two weeks time maybe i,ll get some joy from him.will let you know speak to you soon stay well Ann

    [/b:84aa48da68]

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