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Surgery& MS

hi everyone, Iam in need of some friendly advice & support if its out there. Not very good with getting around on computer skills, I did post on wrong place in bereavement for which I apologise. I had a fall which resulted in surgical intervention to fix wrist injury successfully . But the injury to my knee hasn’t, after 12 months of awful pain, walking on crutches, surgical repair of torn meniscal in my knee my surgeon has told me I need total knee replacement. Has everyone knows our ms is a life of swings & roundabouts . One thing is good but then something else isn’t . I have been on DMT for 17 months, my RRMS has been good the whole time with knee problems.Iam on Copoxine ,it seems to suit me no side effects & more important no relapses. I do need to get my knee sorted I feel like I have wasted a year of my life because I have had an awful quality of life in2017. My knee has controlled everything I have not been able to do. My car is automatic & I have been able to drive but not much because pain has dictated how much.walking has been worst has putting full weight on my knee has stopped me walking far, all day to day things I have not been able to do ! My surgeon has said he was slightly reluctant to put me through surgery because of my ms ! But I have had it over 10 yrs , previous surgery’s don’t seem to have affected it. I want to be able to get my quality of life back & stay up on my two feet for as long as possible. Has anyone out there had a knee replacement , if yes has it had any implication or kicked off ms symptoms. Iam scared at the surgery but I really want to get walking better. , I would really appreciate any response, & a few friendly voices . Thank you

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Hello Aurora

Is your surgeon worried because of your post operative rehabilitation, or the effects of a general anaesthetic?

If it’s the anaesthetic, that shouldn’t be a problem.

Sorry I can’t help with your specific operation, but I have had two general anaesthetics this year and they were no problem. And I had them in the past with no major issues either. And at that time I was still relapsing remitting (I’m now progressive so it’s a different situation) and I didn’t have post operative relapses.

Sue

It seems to me that your surgeon is more wary of an operation than you are. Tell him that you’re happy to have your knees done if he is.

It’s your life you want to make easier, not his!

Regards,

Anthony.

good luck and i hope you are soon back on your feet.

carole x

Hi Aurora I had a bilateral hip replacement (ie both done at the same time) 3 1/2 years ago. The consultant recommended doing both in the one operation - first of all because they were so bad, but secondly because it meant I only had one lot of anesthetic / one lot of stress regarding the op etc. I was told the operation could result in a relapse and that it would take me longer to recover, but I was in so much pain that I decided to go with the consultants recommendations. I didn’t relapse but recovery did take a bit longer than for others (maybe partly because my op was bilateral). I was advised to get my muscles as strong as possible before the op, and so I swam a couple of times a week - that was painful and exhausting but I wanted to do as much as I could to help myself. I also obeyed post op instructions to the letter - and that was incredibly hard, but soooo important! Hope that helps, and if you want to chat further feel free to pm me. Hazel

Hi Aurora, goodness me. what a pickle your Ortho consultant has put you in, a risk vs reward choice. Which choice is going to improve your mobility and reduce your pain? Ask your Neuro consultant, MS Nurse and Ortho consultant the same question - for their professional opinion, their off the record (if it was their loved one), opinion and finally ask yourself.

Be determined to get the answers. Your GP should eradicate your physical pain with meds, referral from MS Nurse to physio’s.

Here’s some harsh, with love, words:

Think what you CAN do now. Yes, of course it’s horrid to have MS but exercise WILL strengthen your body and help your mobility. Eating healthy food, double the 5 a day to 10 a day Vits, Veg & fresh fruit.

Your hip pain is exacerbated with MS Neuro pain. I’ve had two operations this year, both fine. You can speak to anaesthetists before deciding.

PPMS, : 1. No remissions from the struggles or pain. 2. Everyday fatigue, not just tired…too exhausted to lift arms to wear clothes. 3, Limbs go into painful spasm. 4. Impaired vision, DVLA will take driving licence away for peripheral blindness or slow reactions. 5. Bowel & bladder incontinence due to spinal nerve damage. 6. Uncontrollable Tremors. 7. Fork mashable food to swallow without choking. 8. Memory loss, constant rewind of tv just to follow a half hour programme. 9. Forget who is who in family! 10. Non restorative sleep, every hour ‘slept’ is only 15 minutes of proper rest. Well the list goes on and will probably get worse.

Some nicer words: Aurora, my description of PPMS is based only on my own experience, I’m not making light of RRMS. All MS patients need to be positive, easier said, but not impossible.

Despite the challenges, our quality of life can be improved. I truly wish you well. Good luck hon x

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Hi Hazel, thanx for your response. I have been taking DMT for 18 months & my ms has never been better , no-relapses which to me is great. Ihave had two general anaesthetics in 2017 related to my knee & like you had no relapses . My knee is so painful when weight bearing for too long it is making exercise difficult. I love swimming & know this will strengthen muscles but have not been able to go for 6 mths. When in water it’s great. swimming is tiring like you said but something I have always enjoyed. My problem is walking around pool to get in ! Because my knee is so unstable ime frightened incase I slip on floor. my surgeon has been supportive butI feel slightly overly,I told him I appreciate his concern about putting me through a large surgical procedure & maybe it is ignorance on his part of his knowledge about ms,but my ms dr has said she does not seem to be concerned & I know my ms. I have told him my quality of life has been awful this last 12 mths down to my knee not ms! I want to stay up on my two feet as long as Iam able to , not on these crutches & not in a wheelchair.Iam scared about having it done but I know it will get worse if I don’t have it done soon, my ms is good so I think I will be able to recover better. Do you feel you made right decision & was your ms symptoms made worse at all having your surgery. Most importantly how are after having it done thanx for responding .Aurora

Hello,

I had a major repair to my rotator cuff on the left shoulder, a 3 1/2 hour operation, I have SPMS and the anaesthetic affected me badly. It took me a week just to get over the anaesthetic. that aside all went well. Most important, I did all the exercises and now my shoulder is almost as good as new

My wife who does not have MS had a partial knee replacement, quite painful for a couple of weeks after the operation but she did all the exercises and more and within 6 months had made a complete recovery.

Go for it but be prepared for the pain. You are not allowed out of hospital until you have shown that the operation is a success, in other words you can hobble around.

Good luck, I’m sure you will not regret it but do do the exercises.

Patrick

  1. I had 2ops since August,nurses were great regarding my m s and yes there was pain but they controlled it well.hope you are good .

Hey everyone , well it has been three very long weeks since I had total knee replacement. Has expected excruciating pain, but then most of 2017 was nothing but. I have a nice!straight scar but don’t think in with a chance of miss lovely legs haha ! Sadly I’ve found the aftercare of the Physio’s not very forthcoming ! They are apparently understaffed, after discharge my first appointment was ten days later, Ihave had to wait until 18 April for next one. Although Iam doing physio exercises daily it has been difficult. I have been affected by anaesthetic it bought on the fatigue with a vengence ! The energy levels have been awful, the fact is having none! I have found myself exhausted after just 10 mins, my leg has felt like a tonne weight . I need help with the exercises so I have taken on our lovely neurophysio from the MS therapy centre . I have to pay but she is coming weekly from now on & because she works with all our ms patients she is doing exercises with me with the fatigue problems incorporated. It’s working well as she is far more aware & understanding of fatigue problems. Iam surprised how well I can get up & downstairs & walk on my crutches. So doing exercises small& slow several times a day , Iam inpatient to get walking but knew I will take time .so other than surgery pain feel quite well & relieved that there has been no adverse ms symptoms Because I still can’t stand for too long boredom is getting to me , but I do crafts so Am going to immerse in that along side physio. Thanx to you all fr your kind words ,I shall update progress in a few weeks x

Hi Aurora, well huge congratulations to you, sounds like your positive determination will triumph over the awful problems you have endured. As for Miss Lovely Legs, just wear dark coloured tights, especially with a bit of Lycra in. Guaranteed to hide scars, bruises & will hold lumps & bumps in!

Well done hon, looking forward to your update

Chrissie x

Hi Aurora,

Your comments about fatigue issues sound only too real. Just keep on going, do the exercises and smile :slight_smile:

Well done and good luck with the recovery

Patrick

Hi Aurora . Great to hear you are now post op and getting help from the MS physio. Be patient with yourself, keep doing the exercises and getting plenty of rest… It’s worth all the hard work, and sounds like you’re doing really well. H x