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MUA It's been a long time.....

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Natalie, there is a type of four wheeled device for use instead of crutches---I am going to ask Jo if she knows the exact name. You bend your knee on it--the shin rests in a little sling type of thing and then you can walk and take a step with your hands free. I know that they use them here for foot surgery. I can see right now that possibly you will not be able to bend your knee to put it into the slot--I will check around to see if I can find a photo.

Also once summer after knee surgery (this is really the story of my life and the title of my autobiography!) I was on crutches. I fell down the stairs of my house and ruptured my rotator cuff.

I had to use a wheeled chair. They gave me one that the insurance company paid for which was a complete slog--it was heavy, wide and did not move easily. Also, I think it weighed fifty pounds or so.

My husband went down to the local senior center and they sent me a little, light weight chair that was the bomb. I could get around in the house by moving my feet to push myself and now, I could go in the kitchen, make a sandwich and take it into the salon---er living room and eat it there. Much nicer for getting around especially outside. I could go to the library by myself and wander the aisles for hours looking for books. Maybe getting a small chair with wheels will help your life. Kelly
 
Thanks Kelly if you could find the name/picture of that it would be great :)

Hopefully OT will be able to get me a lightweight wheelchair or something.
 
Thankyou xx

I've done my PT exercises and cried throughout them and everytime I have to get up to go to the bathroom the pain is so bad as I put my weight through it :(
My husband has been amazing :)
 
Quick update just spoke to Rebecca a fellow SC sufferer and she was saying that after any ops or flare ups of SC or procedures that she found the automatic advice was PT exercises and weight bearing but she found that this advice was need quite right for a person with SC as we are struggling so much with reducing the inflammation inside constantly by putting any more pressure on it at we could only be making things worse so for the next few days at least I will just rest and ice and elevate and see how I get on.
I've had 50mls of Oramorph today which is a solution of 10mg per 5mls I have a 50mg fentanyl patch on I've had 2xparacetemol 3 times and 20mg of Amytryptiline I'm keeping a note of how much I'm taking and what the pain is like.Im about a 6 on the 1-10 scale.
 
:cry4:Oh, Natalie, I can feel your pain and total frustration all the way across the Atlantic. I am so disappointed for you that nothing has been done that really aleviates your pain.

I think you are making a wise decision to rest, elevate, and ice, ice, ice. I certainly can't see how doing PT exercises that hurt so much you're in tears can possibly be helpful to your leg. :wacko:

You will be in my thoughs and prayers :prayer1:. Please take care of yourself and keep us posted. We care.:console:
 
Thankyou so much I agree and my poor husband was so distraught when he came into the room to find me in tears he shouted please stop surely you shouldn't be crying in pain through them?!I really shouldn't be I'm going through enough pain without making it worse!
I feel emotionally drained too I keep thinking about the future and wishing it was going to be better but at the moment I can't see that at all...
 
Hi Nat-
I too have read that rehab for SC should follow the same protocol for someone with Rheumatoid Arthritis. I believe that would be a more gentler rehab. So sorry you have to go thru this.

I have seen people at the grocery store using those walkers with the knee support too that Skigirl suggested. They look great but I'm pretty sure you would have trouble bending your knee enough to use it. But check into it. They might be adjustable enough for you to use.

I think I am going to start a thread too on this forum about my situation too. The more opinions I get the better it will be for me to make my decision.

We're all thinking of you!
Martha
 
Thanks Martha I'll make sure I mention that type of walker to OT.
I think you and Rebecca are right about being more careful with my rehab xx I think you should do a post huni it will really help you xxx
 
I found this device, Natalie. If you look on broken link removed: https://www.thefind.com/beauty/info-knee-crutch#settings[search.pagesize.multiplier, you will see dozens of different types.


I also worked with a surgeon who tore his Achilles tendon but continued to work using something similar to this, though his was a much simpler design. More like a surgeon's stool with the knee support on instead of the seat! I'll phone the hospital on Monday and ask him what it was and where he got it from.
This is the Sammons Walk N Roll!
[Bonesmart.org] It's been a long time.....


Also, if you would give me the link to your forum, I'll pass it on to the lady I was speaking with. I am sure she will be pleased to join.
 
Natalie, I haven't posted in awhile. I missed your procedure. I am sorry you had to go through all that with no real fix!! My son's "angelversary" was 4/26. He was 26. It just leaves me a mess!! The scooter's look promising. Just letting you know I am thinking of you. It is so hard to get ahead of the pain. It stinks until you do!! Take care!!
 
megbabyrn said:
Natalie, I haven't posted in awhile. I missed your procedure. I am sorry you had to go through all that with no real fix!! My son's "angelversary" was 4/26. He was 26. It just leaves me a mess!! The scooter's look promising. Just letting you know I am thinking of you. It is so hard to get ahead of the pain. It stinks until you do!! Take care!!
Click to expand...

Oh Meg please dont apologise I hope you're doing ok my thoughts are with you xx
 
Yes, sorry, I did see about there being blood but forgot to comment. To be honest, I wouldn't be at all surprised given the inflammatory condition of the knee inside. I truly wouldn't expect it to be anything more sinister than that.

I meant to as if you on disability benefits? Because you ought to be. You also ought to be on full benefits which would mean you could pay for help in your house. All three of my sisters are in receipt of that. You should also get free prescriptions and help with special aids like that roller trolley.

Did you see my request for the link to your other forum? Pwease?
 
So sorry to barge into your conversation but wanted to share the type I have seen before. It is portable, has a small battery and a seat you sit in rather than having to lean on with a bent knee.

Hope it is alright to call out the name. This one is called the Travel Scoot if you want to read more about it.

 

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Hi Natalie;
I am so sorry that this is happening, but I'm with Rest Assured. This NOT the end of the line. Never give up!!!

Ativan (Lorazepam) is a med used to treat anxiety and you shoudl ask your GP about it if you aren't on something similar. It is a relative of Valium which we use to help muscle spasm. For you a bit of help with anxiety would be enormously beneficial!
As for the wheelchairs, there are many that are relatively light and foldable.

As you know I ended up in a wheelchair after my failed TKR. We got my bright red "chariot" from a company called "Drive" here in the US. Do a search on foldable wheelchairs and you will find many.

Armed with my new "wheels", I was able to go out for dinner or shopping with my family. Made a huge difference to me, as walking was next to impossible.
As for getting around the house, there are small walkers that also have a little seat for when you need to sit down. Your GP should be able to direct you to these assistive aids.
I don't know why your OS didn't do more, but I'm sure you will ask him at your next visit.

This is a frustrating ordeal, and the only advice I have is for you to keep searching. Never Give Up.
I'm gunning for you. You are one tough cookie.
XX
 
Jo, to the rescue as usual-- she found the trolley I was talking about. Also, here in the us, you can get these three wheeled deals that have a battery and can go for miles and miles.

Jo is right, you need to be on disability and then there will be more options open to you. Don't think of this as the end of the road---in a way, it is just a new beginning. ONe where you empower yourself with knowledge and get all the equipment you need and go on disability so you can hire some lady to take care of your house!! Really Natalie--I think you are right to just rest for now and try to get outside for a nice ride in the country this weekend to remember that we live in a wonderful world. Kelly
 
Josephine said:
Yes, sorry, I did see about there being blood but forgot to comment. To be honest, I wouldn't be at all surprised given the inflammatory condition of the knee inside. I truly wouldn't expect it to be anything more sinister than that.

I meant to as if you on disability benefits? Because you ought to be. You also ought to be on full benefits which would mean you could pay for help in your house. All three of my sisters are in receipt of that. You should also get free prescriptions and help with special aids like that roller trolley.

Did you see my request for the link to your other forum? Pwease?
Click to expand...

Thanks Jo I thought the same from the little research I've done the forum is

broken link removed: https://forums.synovial-chondromatosis.com/index/

We would love new members :) I do receive disability and free prescriptions but wasn't aware of any help with mobilty aids.
 
Trainwreck said:
Hi Natalie;
I am so sorry that this is happening, but I'm with Rest Assured. This NOT the end of the line. Never give up!!!

Ativan (Lorazepam) is a med used to treat anxiety and you shoudl ask your GP about it if you aren't on something similar. It is a relative of Valium which we use to help muscle spasm. For you a bit of help with anxiety would be enormously beneficial!
As for the wheelchairs, there are many that are relatively light and foldable.

As you know I ended up in a wheelchair after my failed TKR. We got my bright red "chariot" from a company called "Drive" here in the US. Do a search on foldable wheelchairs and you will find many.

Armed with my new "wheels", I was able to go out for dinner or shopping with my family. Made a huge difference to me, as walking was next to impossible.
As for getting around the house, there are small walkers that also have a little seat for when you need to sit down. Your GP should be able to direct you to these assistive aids.
I don't know why your OS didn't do more, but I'm sure you will ask him at your next visit.

This is a frustrating ordeal, and the only advice I have is for you to keep searching. Never Give Up.
I'm gunning for you. You are one tough cookie.
XX
Click to expand...

Thanks do much Sandy I really do need that extra help now with getting out and about and moving more easier inside the house.Im going to make an appointment with my GP in hope they can help with the sleeping etc.Although all I've done for last 24 hours is sleep but I think this has something to do with the GA.
Hope you're doing ok too xx
 
skigirl said:
Jo, to the rescue as usual-- she found the trolley I was talking about. Also, here in the us, you can get these three wheeled deals that have a battery and can go for miles and miles.

Jo is right, you need to be on disability and then there will be more options open to you. Don't think of this as the end of the road---in a way, it is just a new beginning. ONe where you empower yourself with knowledge and get all the equipment you need and go on disability so you can hire some lady to take care of your house!! Really Natalie--I think you are right to just rest for now and try to get outside for a nice ride in the country this weekend to remember that we live in a wonderful world. Kelly
Click to expand...

Thankyou Kelly my wonderful husband has got together with friends and they've booked us a weekend in the country next weekend to try and put a smile back on my face bless him xx
I do feel really defeated and miserable just now but I know I'll snap out of it eventually and the positive me will return and I'll start planning and get on at the health professionals for more help!
Im wondering if there is some kind of forum here in the UK that can help me?
Hope you're healing well xx
 
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