Surgery and effects on PD

Hi there all
10 months ago I fell over and injured my knee and tore my rotator cuff! I have had physio for several months and tried a cortisone injection, neither have solved the pain and limited movement. I have now finally been seen by a orthopaedic surgeon, who said normally he would be happy for me to have the operation, however he is concerned about me having PD and what effect it will have on me and my symptoms and how unstable I will be! Especially the high risk of falls.
Has anyone else come across this issue, I am in a catch 22 situation do I resign myself to a lifetime of pain and limited movement or risk having surgery?? Any advice or suggestions would be greatly appreciated. Many thanks in advance :pleading_face::crazy_face::heart_eyes:

Hello Littlenanny
What a catch22. My feeling, and it may not be accurate, is that your orthopaedic surgeon is being cautious because Parkinson’s is not his field of expertise. I don’t see why, however with some careful planning ,you couldn’t undergo successful surgery since he has indicated that you are otherwise a suitable candidate. I think he should speak to your Parkinson’s consultant about the practicalities of your having surger and it is important ward staff are made fully aware of any specific needs you may have - top of the list being getting your meds on time - but there are other things you need to know in advance such as what surgical care and rehab will you need. One thing that helped me to stay reasonably on course when I
had surgery was my place on the list was decided on what best suited my medication schedule to keep it as close to normal as possible. In short the more you understand the surgery and recovery/rehab the better placed you will be to know if it’s a viable proposition, one you can manage and so on but realistically he does I think need to liaise with your Parkinson’s consultant first and presumably that is what he will do.
I wish you luck and do let us know how you get on
Tot

Hi
I had spinal surgery in Feb 23 and before surgery, the consultant wanted my PD doctor to check me over, and say that it would be OK for spinal opp. It is taking a while to get back to how I used to be, but slowly getting there. The surgeon was brilliant He explained everything. The only problem I had was when I was on the ward my medication I told the nurse who was in charge what times i had to take my meds but each time I had to ask or remind them, all I got was sorry you will have to wait we are busy, or when we have finished going on the meds round we will get yours. Seeing as I was in the same hospital where the PD clinic/nurse’s are I left a message for one of the PD nurses to contact me (we have 4 PD Nurses) when PD nurse had a word with the staff on the ward, she told me that I could have the code for my locker and do my own meds. This was fine till the next day had my opp and had to lie on my back with a collar on and could not move.
So if you have the opp I hope all goes well, just make sure the staff know about your meds.

Morning Tot and Mary 1947
Thank you so much for your postings, both extremely helpful, I think I will contact the PD nurse in the first place, as it seems I need to manage my own health needs!
I do hope you are both doing well and improving every day from your operations.
I have been told the surgery won’t be for another 8 months, but I will definitely let you know how it goes.
Littlenanny :grin: x

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Hello Littlenanny, my husband has had PD for eight years. A few years of years ago he developed osteoarthritis in his knee. Initally he coped with painkillers and Fenbid gel but eventually the pain became unbearable. Fast forward to November 2021, and he had total knee replacement. His x-ray showed it was a very severe case and needed an operation to replace the whole knee. He too was warned about the risk of surgery and effects on his PD but he was in so much pain he said he wanted to go ahead. His orthopaedic surgeon agreed it was absolutely needed. He stayed in hospital a few days longer than is usual for knee replacement but his recovery and progress post op was amazing! The physio said he was in better shape 6 weeks on than others without Parkinson’s. It was definitely the right decision for him. He can now walk and exercise free from crippling pain. He has Parkinson’s so will never run a marathon, but just being able to go for a walk without being in agony every step has been worth its weight in gold! We both wish you luck if you do decide to go for the op. Please keep us posted with your progress. Jean

Hello Jean
Thank you so much for your post, I am so pleased your hubbys operation went well and the progress he has made! With these positive postings, I am feeling more confident about having the surgery; as always with parky I need to put my positive head on and take a deep breath and go for it……, watch this space.
Take care all and enjoy the sunshine :sun_with_face: :smile: little nanny x

Hi,
Incredibly, I fell over last August, down to Pd, tripped over my own feet, injured my knee, and have been in pain ever since. I had an x ray at the time and the knee cap appeared intact. The pain steadily got worse and worse though. Regular pain killers wouldn’t touch it. Because of my dyskinesia my legs still often thrash about, and this has exasperated the injury to the extent that I have now torn the cartilage. I have seen Nhs physios, private physios, and eventually paid privately for an MRI to try to establish the diagnosis. I was referred to see an orthopaedic surgeon, he was brilliant. Took some fresh x rays, and established I need a partial knee replacement. We discussed Pd, wasn’t an issue at all. I’ve been put on an urgent waiting list (4-6 months) and can’t wait! I’ve written off 9 months of my life already to pain and not being able to get out and about. Don’t tolerate it yourself. Life with Pd is a battle enough, make the best of it. Best regards, Chris

Hi Chris
Thank you for your message, so sorry to hear how difficult things have been for you, your posting has resonated with me, everything is harder with PD and as you say don’t waste my life on pain! Good luck :crossed_fingers: with your operation when the time comes. I am definitely swaying towards having the surgery and hoping my recovery is not as bad as I fear​:face_with_peeking_eye:
Thanking you all again xx

Hi
Im really upset and fed up………:
I have just been told by the private hospital I was booked into for surgery on my rotator cuff tear by the NHS, this coming Wednesday, that they feel with all of my issues with my PD, that they are not equipped to deal with me if things go wrong during or post op!! So now I feel more vulnerable and depressed about having PD than ever and not sure if an NHS hospital will be inclined either to carry out the procedure!! Where do I go from here?
Little nanny x

Hello Littlenanny
I don’t know if this will help but sometime ago I saw a documentary where a patient in a private hospital developed severe complications following surgery and they did not have the facilities to manage them. She was transferred to an NHS hospital as an emergency and they got her stable. She went on to make a full recovery in the NHS hospital. It may not seem like it but my feeling is that the private hospital were acting responsibly and in your best interests in acknowledging they may have difficulty in managing your care in the unlikely event of complications. As replies to your initial post have said, if your orthopaedic surgeon (who considers you suitable for surgery) works with your neurologist to plan it accordingly I see no reason why your surgery cannot go ahead bur personally I would opt for an NHS hospital even if it meant a wait. I think you need to find out where you stand with the NHS and how they view your situation, which may be very different to that of the private hospital.
Let us know how you get on.
Good luck.
Tot

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Hello Tot
Thank you for your reply, I know I can always rely on you to come up with a positive slant when you put a post on lol😃
That TV programme sounds appalling; the poor woman, I am coming round to the fact that they were acting in my best interests!
Yes I agree about talking with my neurologist and/or PD nurse, who I did ask if she had any pointers for me to take into consideration, she said that I must make sure I ask for my medication on time! However in light of the issues raised, I will get in contact with her to ask her opinion on what has been said.
Once again Thank you for your support .
Take care little nanny :older_woman:t3: x

You are very welcome Littlenanny, I hope you can get things sorted out, that the surgery can go ahead and that you are comfortable with it all. Please keep us updated with developments when you are able, I’m sure your experience will help others who may be in a similar position.
Look after yourself.
Tot

Hi everyone
Just wanted to update you, about my surgery. Went in hospital five days ago for a rotator cuff repair. Which seemingly has gone well, although now face a very long recovery process. I am unable to use my right arm, For six weeks, which is a challenge! However The worst thing is, I now have a constant tremor , I am hoping that this is a temporary thing and due to the trauma my body has been through?
I want to say how marvellous the Nursing staff at my local hospital were.
Little nanny? X

Hello littlenanny,

Hope your reciverg is going well?

I would be very interested in an update to your last post. I will at somepoint begoing in for a rotor cuff repair as the small tear which was being monitored and manage has deteriorated quite dramatically.

A well meaning man grabbed my right arm to try and prevent a nasty fall (did save my head hitting the floor so very greatful)after a young child ran into both my sticks and sent me flying. The young child and her parents did a quick dissapearing act. I have just had the results back from my scan I had on Wednesday and I now have a full rupture to my Supraspinatus tendon and a small tear to the Subscapularis tendon. I am basically no longer independent as I cannot use my sticks or self push myself in my wheelchair.

Any advice or things you think I neec to think about would be very beneficial :sunglasses:

Hello jps1926 I just wanted to wish you well, what a way to sustain such an injury that is making life so much more difficult - though it was good to know you avoided a head injury. I hope littlenanny can help.
Take care and do let us know how things are going for you.
Tot

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Hello jps1926
Apologies for the delay in responding to your post!:flushed:
I was sorry to read how you have sustained your rotator cuff injury!!
I am now 8 weeks post surgery, I can’t say things are getting easier, as the surgery is only the very start of the recovery process, it will take several months to gain full recovery! So it is not a decision to take lightly, as it gets much worse before it gets better…… so I’m told
There are several tips I can share with you……….
You will definitely need help/support with all personal care, cooking, cleaning and shopping
If you can try practicing NOW what it will be like to only use one arm it will flag up the difficulties you will encounter.
If you can buy a triangle support pillow
If you can buy a recliner chair; I got mine from facebook £150.
Have plenty of TV to watch, as you will be limited to much else!
Resign yourself to being housebound for the first few weeks, if not longer- depending on which arm your injury is on, putting it bluntly it is needing the loo, mine is my dominant arm, so all things are difficult and very time consuming, plus my left side is my PD affected side!
Have plenty of ice in or a ice pack
Plenty of painkillers!
Get an electric toothbrush
Baby wipes to wash under arms etc…
I wasn’t allowed to shower or bath for 6 weeks or wash my hair, hence why I never ventured very far :joy:
You’ll need very loose fitting clothes
Jogging bottoms, t shirts, zipped hoodies (if I’m allowed to say on the forum Primark is probably the cheapest place to buy them)
You will most likely be in a sling for 6 weeks 24/7 which I had to wear my clothes over the top!
** I had very minimal pain when my arm was in the sling…… it is much worse once out of it and doing the physio and trying to use it more, I am now taking more painkillers than before!
Still limited to how I much I can use it!
It is worth looking on YouTube for coping strategies, of course being mindful that it’s not a‘one size fits all situation, I also googled useful tips and tricks…… yes a lot of rubbish out there, but also a lot of helpful information
You will be given advice from the hospital on your individual needs.
If you can try to be as active as possible, lots of YouTube videos.
Follow the advice on the dos and don’ts.
Good luck and keep in touch, if something else comes to mind I will post it here for you!
Little nanny

Firstly sorry for the delay in responding, but I have had so much going on and far too many hospital appointments
for various issues. Also I had a very bad unexpexted fall 3 weeks ago. Luckily no real damage and I had it in the right place as I was at a physio session for my back issues at the the hospital.

Thanks for the suggestions tips and these will all come in handy eventually I know for when I do have my operations. I hope that you are coping better with yours now and got into being able to use the arm again and fingers crossed pain free.

For me it is going to be a very long time before I have my operations, as unfortunately as various other consultants have said in the last 2 months, they will not proceed with any operations until they get agreement from the neurosurgeons and spinal team. So for now I am going to be having an injection in my shoulder on 1st February and some tests to see if my shoulder joint will be good enough for the operations to go ahead. In the space of a few days I had the knee consultant say something similar and a consultant who had me scheduled in for an operations to release a trapped ulnar nerve in my left shoulder put it on hold.

Without going in to everything I have osteoarthritis in practically evrry joint in my body due to the abuse I gave my body by doing lots of sports and avtiviyies when I was growing up. Basically I have worn out everything too early, but I would not change a thing for all the memories made and achievements.

I could have had the injection at the beginning of January but I have put it off and will deal with the pain for the 3 week holiday we have in January.

The silver linning as there is always one of them is I have eventually heard today that the neurosurgeons will be carying out decompression and probable fusion of my C4, C5 and C6 vertebrae. Then once that has been done and I have recovered suffciently the Spinal surgeons will sort out the Stenosis and compression in the lower back L4 to S1 region. But they are going to leave the Scoliosis in the thoracic region at this stage.

We have decide that what will be will be and are just getting on the best we can. Today one handed and sitting on a stool and occasionally standing up I have managed to cook and glaze the Christmas ham, baked my Banana & Satsuma pie and made 3 dozen sausage and cranberry rolls. When I counted I still had all my fingers and my daughter has now written down all my recipes for these.

Life is for living and I have always done that at full speed, but now it is a bit slower but still full speed for me lol. I will update you when I can. Wishing you a Merry Christmas, a Happy New Year and whilst I am on a roll a Happy Easter.

Smiling uses less muscles than looking unhappy so we are smiling through what remains of 2023 and we will be continue smiling through 2024.

All the best wishes and apologies as I know updates will not be that regular 🩵😎

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That is truly an insporational post jps1926. I hope you have a wonderful Christmas with your family.
Tot
PS I like the sound of your banana and satsuma pie lol

Morning jps 1926

I do hope you had a good Christmas!
Thank you for your reply, I was sorry to read that you had recently had a fall, but thankfully no injuries.
I do wish you luck with all your health issues and that 2024, is a healthier year.
I’m sure you will keep us updated when you can.
I am improving slowly, the pain is finally getting more bearable, it has taken 3 months to get to this stage, which was expected! I am looking forward to getting back to some level of fitness, that the PD and surgery will allow me to!
Happy new year
Little nanny

Hi Little Nanny,
We had a lovely Christmas and I hope you did as well?
Glad to hear that slowly things are getting better, keep up the good work.o

By way of a quick update, I had a cancellation appointment with the neurosurgeons on 4th Jan and the quick version after 18 months. NHS were wrong to transfer my case to the outsourced private company because “I am a complicated case”. A good way to start my appointment after travelling 60+ miles at my own cost to see them. They then went on to try and justify the reasons which as far as we were concerned was all smoke and mirrors.
I contacted an old friend who is a sports physio and have begun to train alternative muscles to get round the shoulder injury, but I have had the injections on 1st Feb which have helped as well.
With regards to my back we now need to start all over again the neurosurgeon consultant I saw told me that not only that I should have remaind within NHS due to level of injury and post op care I would need, that also as the MRI scans were over a year old that these would all need to be done again. He also stated that the quality of the scans and reports were both of poor quality something he sees far too often from the NHS. I took greatest pleasure, joy and delight in informing him that both were done by the company he now works for and if less consultants jumped ship and chased money that perhaps there would be less issues and more NHS resources. Oh how I love to see consultant squirm and then try to back track. I just sat quietly looking over my glasses thinking that what a complete (please make up your own phrase) he was.
Anyway positivity is 2024 mantra, we had a fantastic holiday cruising from LA to Miami via the Panama canal. We made lots of new memories, made new friends and all in all had a brilliant time.
My lovely wife ticked off several things on her bucket list including seeing hump back whale’s, other whale’s and various types of dolphin’s.
I have seen my GP and she isgoing to chase as to why we have yet to recieve the Consultants letter, before we start the long but succesful path of trying to get someone to start taking me seriously (2024 = positivity).
I have also sent a written complaint to a variety of “important” people asking for why there is a hidden policy of the patient is too complicated to treat and they also have PD, are in a wheelchair and are therefore disabled and can be fobbed off
Of course my sensible head phrased it far better, but did raise disability discrimination in all letters.

Will update as and when something happens. In the meantime keep well, keep happy and keep smiling it really does use less facial muscle.
Best wishes John :sunglasses:

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