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Specialist holding off THR

Posted , 8 users are following.

Chrissy62
Chrissy62

Hi, I'm new this forum so I will explain my position. After having a few falls whereby my legs just gave way, I went to my GP. I gad various tests and was referred to Wrightington hospital in Wigan. Again further tests done and the diagnosis is Hip Dysplasia, Osteoarthritis, significant Labral tears both sides and numerous hip cysts. My problem is pain management. The specialist has told me as I still have some joint space and due to my age (51) they want to hold off with the THR. I am in constant pain and get spasms in my legs, this us causing me problems at work. I can't sit, stand or walk for any lengthy period of time. I dread coming downstairs as I have fallen a few times. Can anyone suggest any self help ideas I could try?

1 like, 44 replies

44 Replies

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  • Jodi-France
    Jodi-France Chrissy62

    Posted

    Well I WOULD make them get rid of the Hip Cysts. Even if they do not want to do a total Hip Replacemnt. My gut feeling is the cysts on your hips is what is causing you the pain. I don't know enough about it to comment further on a course of treatment for Hip Cysts, but I would not be agreeable to simply accept that you have to have them and they will not do anything for them.

    For pain releife jsut enough to allow you to sleep I like Voltarene, Dicofenac, cream. It doesn't last long and won't take away real deep pain but for mild to moderate pain it does work.

    • Chrissy62
      Chrissy62 Jodi-France

      Posted

      Hi Jodie, thanks for replying. I'm currently on Co-dydramol and it was initially helping after trying Codeine, Co-codamol and amytryptilline. I've an appointment at my GP as it's now not relieving my pain at all just making me feel not with it, hence the reason why it's causing issues at work. I have a boyfriend pillow that I have to use between my legs of a night and I possibly get about 3hrs sleep which I can cope with luckily enough. It's just that I can't do anything or go anywhere without having these sharp shooting pains as if something's trapped. My specialist has given me her direct number as and when things do get worse so she can book me an appointment straight away. I don't know how much worse it can get and wish most times they would just agree to do the THR.

      I'm hoping when I see my GP on Tuesday that she can try me on some other meds.

  • eileen64__UK
    eileen64__UK Chrissy62

    Posted

    Hi Chrissy

    What about a referral to a pain clinic??

    My GP is not in favour of them but it was the consultant that wrote to her asking her to refer me.

    It might be worth a try

    Love

    Eileen

    • Chrissy62
      Chrissy62 eileen64__UK

      Posted

      Hi Eileen, thanks for your reply, I've not heard of a pain clinic but will ask my GP on Tuesday, so thanks for that x
  • kaleani75551
    kaleani75551 Chrissy62

    Posted

    Hello Chrissy, sorry about your multiple hip issues..i think the doctor is right about waiting as long as you can for a THR since the life of an implant is between 15-25 years. 

    You could skip the stairs by moving your bed downstairs, no? I am sure you thought about it though... Other than that, short of quitting your job, i do not see what else to say except good luck and keep smiling...it does help

    • Chrissy62
      Chrissy62 kaleani75551

      Posted

      Thanks for your reply and no worries I always keep smiling as there's people out there far worse off than me, now and then though it does get me down. If I'm having a bad day, I usually come downstairs on my bum but the other week I felt fine and I put my foot diwn on one of the stairs and my leg just gave way, ended up hitting my head on radiator... Wasn't smiling that day. Thanks anyway x
  • cindy6649
    cindy6649 Chrissy62

    Posted

    I'm sorry you're in pain. It certainly makes life miserable. Here in the US we have pain clinics who treat pain in coordination with surgeons and other doctors who are treating the causes of the pain. They can work a little differently but that's how mine works. The pain clinic doctors also referred me to another group called integrative health that offers things like gentle yoga, relaxation exercises and group meetings that teach breathing and other ways to deal with chronic pain. It has been very helpful. 

    However, unfortunately, like Jodi, the most help has come from pain medications. Baclofen helps with my muscle spasms and I just switched to MS Contin (morphine sulphate) extended release tablets every 12 hours for bone pain. The MS Contin is what I consider one of "the big guns" because it's pretty strong and even though I'm on the lowest dose available, it may still be a little too strong for me at this point. I'll give it another week and see if I still feel it's too much. 

    I had two labral tears too and had those surgically repaired 13 months ago. That may be an option for you without having the thr yet. They could remove the cysts and repair the labral tears, assuming they haven't ossified yet, and that could buy you a considerable amount of time if they can repair the damage. I had to have a thr 11 months after the labral repair because there was too much damage to the bones that the labral repair couldn't correct. By the way, I'm 45 and got the "you're too young" speech too but the pain was preventing me from walking without crutches and required narcotic pain medications so I finally said it has to be done. I'm extremely happy that I did. 

    Good luck to you. I sincerely hope you get some relief soon. 

    • Chrissy62
      Chrissy62 cindy6649

      Posted

      Thanks for your reply Cindy, I am going to ask my GP about being referred to a pain clinic as suggested by Eileen. I have been told they cannot repair the labral tears as due to my dysplasia they would just end up tearing again so it's a pointless procedure.

      i think if I can get my pain under control then I will try and hang out as long as possible.

      i do have crutches but I am trying not to reply on them too much, some days I am trying to be too brave and should just use them but I am worried that I will start relying on them and I ned to keep myself moving.

      anyway you take care and thanks again for replying.

    • Jodi-France
      Jodi-France cindy6649

      Posted

      I sure agree with Cindy6649

      "I had two labral tears too and had those surgically repaired 13 months ago. That may be an option for you without having the thr yet. They could remove the cysts and repair the labral tears,"

      Managing you pain is NOT a solution. Repair your body, that is the way to go.

  • eileen64__UK
    eileen64__UK Chrissy62

    Posted

    Hi Chrissy

    Our pain clinic works in conjunction with other docs as well.

    They sent me to a Chronic Pain Management group. It's excellent. {by the way I'm in the UK...where are you?} Its run by phil who teaches us about disctraction, relaxation techniques and various things. He might come in that tday with it planned out what he was going to talk about and he over hears some of us dicussing some particular problem we have and off he goes on to that subject. We meet once a month and the group itself is good. If you go in feeling {I dont really feel like coming here today} you dont come out that way.......we all have such a laugh as well as picking up hints and tips.

    Love

    Eileen

  • ros007
    ros007 Chrissy62

    Posted

    Have you tried TENS for pain relief. It doesn't work for everyone but I found it very helpful.  You have to buy the kit yourself and it is worth getting one with a variable intensity & frequency program as it stops you becoming habituated to it.  You can wear it while you walk around but don't leave the electrodes on too long as you can get a skin reaction.

    There is a different one from lloyds chemist which works in a similar way but the system I found best only works on mains but you only use that one for 20-30 mins a time and you wouldn't want to use it out and about even on the battery settings.

    If it is any consolation, I know several people who went to Wrightington, one who had a revision from another hospital in her 30s who is now facing a second revision over 20 years later but who has been fit and active for the whole 20 years.  The others have all done well so you are in a very good centre.  So when they do decide to do it you have a good chance of success and a long implant life.

    • Chrissy62
      Chrissy62 ros007

      Posted

      Hi Ros, thanks for replying, Wrightington is a brilliant hospital and the specialist is brilliant so I know I have no worries there. I just don't know whether to call them now and advise that I have had enough of this pain and legs giving way or to try something different to manage the pain and try to cope a little while longer.  Work have put some adjustments in for me which I am grateful for but they are still not understanding some of my issues, I have the Union involved now but that's a different story. 

      I am frightened to do normal things in case I get the jarring pain or spasms. I will speak with my GP over possibly referring me to a pain clinic and go from there, I will also mention TENS as I hadn't thought of that.

  • eileen64__UK
    eileen64__UK Chrissy62

    Posted

    Hi

    Yes I know a couple of people that have gone to that centre as well....good reports

    As for the TENS......our hospital lends them to you to see  how you get on with   it

    Then you can buy one from them if you want to.   I didnt find it brilliant but it did help a bit so anythig is worth a try.  I bought mine from Lloyds. I've never tried a mains onequestion  I would wear mine out and about if my clothes were loose enough to disguise itbiggrin  You dont wear it driving but I do wear it as a passenger in my husbands car if its a long distance

    Love

    Eileen

    • Chrissy62
      Chrissy62 eileen64__UK

      Posted

      Thanks Eileen I will mention this also to my GP, as it sounds better than being spaced out on painkillers all the time and maybe i will be able to function better in work (it's mostly the afternoons) I can't afford to reduce my hours or pack in work plus I would go insane in the house all the time.

      take care Eileen and thanks again, will let you know how I get on at GPs.

  • christine98681
    christine98681 Chrissy62

    Posted

    HI CHRISSY

    SORRY MY CAP LOCK IS STUCK ON BUT THIS IS WHAT IM EXPERIENCING .

    WHEN YOU GO TO SEE THE PAIN MANAGEMENT TEAM THEY PROVIDE YOU WITH THEM ON A LONE BASIS  THEY HAVE ONE SPARE I GOT ONE OF THEM BUT IT DIDN'T HELP ME 

    THEY WILL TELL YOU HOW TO USE IT

    OR DOYOU HAVE SPECIAL NURSE'S CALLED MY THERAPHY THEY WILL COME TO YOUR HOUSE THEY WORK FOR THE NHS BUT IF YOU ARE IN A DIFFCULT SIUATION WILL GET YOU ALL THE HELP YOU NEED PLUS THEY WRITE AND TELL YOUR DR WHAT MEDS TO GIVE YOU

    I HAVE A DIATIONCOME TO MY HOUSE AS IM UNDER WEIGHT ,PHYSO'S AND DISTRICY NURSE'S HOW TO GET THEM YOU RING YOUR SOICAL SERVICES OR YOUR  DR CAN ALSO ARRANGE IT IF I NEED ANY HELP FOR ANY EQUIMPMENT THEY SORT IT OUT FOR YOU

    THERE OTHER NAME  IS(RAPID RESPONCE)I GOT THEM THROUGH BOTH DR AND SOCIAL SERVICE'S IT TAKES LESS THAN A WEEK ALSO THEY HELP YOU GET MEALS ON WHEELS  IF YOU NEED ANY MORE HELP SEND ME A MESSAGE I WILL EXPLAIN IT BETTER IF YOU WANT.

    THE PHYSO WILL PROBLY GIVE YOU A ZIMMER FRAME BY THE SOUNDS OF IT WITH YOU NOT BEEN ABLE TO WALK PROPERLY AND KEEP FALLING TILL THEY THINK YOU ARE MORE STABLE ON THE CRUTCHES AMON ONE AT THE MOMENT

    ALSO SOUNDS LIKE YOU NEED OCCUPATIONAL THERAPIST TOO SHE WILL GET YOU EVERY THING TO HELP YOU I HAVE ALL SORTS OF GADGEST THERE IS ALWAYS SOME ONE OUT THERE TO GIVE EXTRA HELP YOU DON'T PAY FOR ANYTHING.

    GOOD LUCK

     

    • Chrissy62
      Chrissy62 christine98681

      Posted

      Hi Christine, I'm so sorry that you are going through it as well. I know this sounds very image conscious but I don't want to use a walking aid as I am trying to continue my life as normal. I will use my crutches on bad days and I've had to help (which I pay for) with ironing as I can only do a few items befor I'm in pain and uncomfortable. My hubby helps with the cooking and tidying up when he's home. He works away and it's when I'm by myself I'm finding it difficult but only at times.

      i may ask about physio as I had that about 5 yrs ago but it didn't help me, this time it may be different.bthink a really good discussion with my GP is what's needed and I need to be open and honest about what help I need. My problem is I always just struggle on.

    • eileen64__UK
      eileen64__UK Chrissy62

      Posted

      Hi Crissy

      You use your crutches or a stick if it helps.....stick doesnt help me.

      Dont look on it as giving in......look at it as a coping mechanism....it will let you do so much more than you can without them.

      I'm 68......my crutches are Pink with black {bit that goes round the arm} and a few little black bits on the actual stick. Everyone admires them and they are a godsend as far as I'm concerned......It took a long time to convince myself and my pride that it was better using thembiggrin I think most of us go through that stage at some time or other.

      Love

      Eileen

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