I am sorry that you find yourself in this situation. I hope you have access to some knowledgeable Medical help. Best regards Jean

I've had my hip replacement almost two weeks ago I'm just like you I watched videos of people walking the same day I couldn't even lift my leg the evening of the operation or the next day ...I've been doing quite well but today the pain woke me up..pain in my buttock thigh calf shin and ankle...I think the muscles are getting tight...I have no idea if Im over doing things or not doing enough

I am hoping that by now you are managing a lot better. I am no longer needing walking aids and am getting around a lot better. As you may know I also contracted Vasculitis in the legs and it completely put my recovery back. I am 6 month post op. My specialist has not pushed me to do most of the regular rehabl as I was not able to and he has withdrawn the idea of going into the pool as we have no idea what caused the Vasculitis and he doesn't want to risk anything setting off a relapse. Hope you continue to heal. Jean

Hi, thanks for the comment. My hint is to make sure you continue doing the exercises that the Specialist gives you. Every day. I was not able to do that as of the Vasculitis that developed in my legs and the sores that were present up until about a month ago. I am still behind in recovery but am walking without sticks or mobility aids now. My specialist usually gets patients in hydrotherapy at about 8 weeks but we have decided that I shouldn't go into chlorine water due to not knowing what triggered the vasculitis. Good luck with your recovering and keep on with those exercise.

Hi, It is a real shock when you hear those words spoken. Nothing prepares you for that or for the feelings that come afterwoods. As someone who cares, you will go through many emotions too. Just remember, even if she never says it, she will always love you and appreciate the things you do for her. Take care Jean

I also fell and broke my hip in pain not only with the leg

Yes, I believe most of the videos are put out by Hospitals, Specialists, Physios so as not to scare us off. LOL I am off the walking Canes mostly and just use them for a bit of stability because of the problems of Vasculitis which hit me one week out from hip surgery where my two legs became balls of sores and puss. I am at the three month stage after left Hip surgery now and the only real problem I seem to have is that the length of the surgical leg is 1.5cm longer than the other. (Why? Surgeon said it happens and it will probably come good. Whatever that means.) I have just bought some height riser from Amazon and they arrived today so will be fitting them as soon as I can properly get a shoe on the left foot when the swelling and sores from vasculitis subsides. I wish you all the best. Thanks for the comment and keep at it. Try to keep up the exercise as I was unable to and still get very stiff. Regards Jean

Absolutely. This video is negative and untrue. She is depressive mood and melancholic absolutely negative. I felt horrible , caused me nausea to look at her. Unbeliavable. Why she did not try to loose some weight before this surgery , of course she can't lift her leg with such obesity

Hi Linda, Gosh you have been through it havn't you. I have never heard of the non weight bearing theory before and can only imagine how blooming awful that would have been. I could not have done that for sure I couldn't. It was bad enough that I developed Vasculitis at the first week mark and spent upto now with puss filled blisters and excruciating pain. I am unfit to start with so that didn't help me. Im glad your fur babies were there to help get you through. They make a big difference don't they. I am nearly at the three month mark now. I limp because my new hip has made that legger higher than my old leg and it throws my back out. I will have to get a height riser insert. I can do for myself now and have just stopped using the walking canes. I take them if going shopping at the supermarket or Mall just for confidence as I am wearing two odd shoes at the moment. The shorter leg to raise the height a little. I don' care it looks odd and because me legs have a lot of discoloration it just looks like the shoe is on because of that. LOL I am wishing you good recovery.

Thanks Sue, Well its been nearly 3 months now since Hip Surgery. I ended up, one week after surgery developing Vasculitis which has taken up until now, to heal itself. Not quite there yet with the vasculitis but doing really well with the walking after hip surgery. My left leg is oh so slightly longer than the right and is a slight problem . I will be getting some shoe inserts soon to see if that helps even things up. Thanks for taking the time to watch the videos. Jean

Thanks for the comment. Nearly at the 3 month mark for the Hip. It is doing quite well and I am coming along well. One leg still shorter than the other but I can get an insert for my shoe and that will solve that. Vasculitis, thanks to a heap of you beaut medications is coming to the pointy end of recovery now. Looking good on the outside but still very bruised on the inside. I am happy where we have got to so far.

so glad you are in recovery it’s great to know that it is possible , I’m currently going through the exact same thing with my vasculitis, any advice on what medications have worked for you? None of mine seem to be working 😒

@@jociepringle4995 Hi, I have been on Prednisolone (I think thats how you spell it) and later I was put on Colchicine to supplement the Prednisolone as because of the side effects of pred they didn't want to raise it up when the pain increased so they had me take Pred and Colchicine at the same time. If that makes sense. All of the soars have dried up now. The pain has gone. The skin is left with huge red patches at the moment but I think they will go as time goes by. I am much happier now and coping mentally better. I am only on the pred for another 2 weeks then finished and 6 weeks for the colchicine then finished. I was able to ween off the Tramadole a few weeks back. Hope you find something soon that will help you. regardss Jean

Hi Jean I hope youre doing well now and have a fast recovery. Recently been diagnosed with IgA vasculitis but been suffering from this for almost 2 months. May question is does it itch on a later weeks? It was not itchy at all but the past 2 days I wake up in the middle because of the severe itch each on my leg and feets usually the red spots and bumps. How did you manage it? Hope you can see my message.

@@atan1625 Hi, Mine started as slight little red dots and within a few hours went into a very bad rash which over the following days went into sores and then puss filled sores. They did not itch, ever. Pain was terrible. Apart from the pain on the outside, I had and still have pain on the inside which is like an internal bruising. The sores have now cleared up apart from one which is holding on. It has been a very bad experience. I took Predisalone (think spelling is correct) which I believe was the meds that helped the most. Doctor has recommended yearly Kidney testing as this disease can damage the organs in the body. Hope you get well soon. Jean

Well its been nearly 3 months now since Hip Surgery. I ended up, one week after surgery developing Vasculitis which has taken up until now, to heal itself. Exercising has been a problem due to the painful legs and sores on the legs. Not quite there yet with the vasculitis but doing really well with the walking after hip surgery. My left leg is oh so slightly longer than the right and is a slight problem . I will be getting some shoe inserts soon to see if that helps even things up. Thanks for taking the time to watch the videos. Jean

@@mycerebralamyloidangiopath4710 No excuses for your absolutely depressive video. STOP posting read what people write. Stop . What is your religion? How you dare to post negative videos.

I had my first post op visit with SUrgeon last week. He acknowledged that some have the feeling of one leg being longer than the other. He said not to rush out and buy and height insoles for my other shoe as I will probably find that over time we will adapt to the feeling. He said that due to the length of time we "hobble" around waiting for surgery, we can weeken muscles and tilt to one side so that after surgery we feel that its not right. He said for me to give it time. He said that there is an acceptable length difference of 1 cm and muscle strength should correct it. I will wait and see before spending my money. LOL You may have seen that I have also had problems with a diagnosis of Vasculitis which has held me back but he said to not worry as I will catch up when things heal up. Im getting around a lot better now but the pain from Vasculitis is still hard to bare. I walk mainly without crutches now but use them when I go out for stability and peace of mind. Have you had a follow up with your surgeon yet. Make sure to ask him all the questions you are worried about when you go. Keep me updated Regards Jean

Hi, I thought I would follow up with you and see how you are going. I am walking independant of any aids now although I will use a cane when I go to the Supermarkets and shopping centres just for stability. As I developed dibilitating Vasculitis on both my legs, top to toe, I am only just know at the point of the legs recoving fully and thats on the outside, the inside of legs still feel tender due to bruising. I must admit, as per hip, I still limp so feel I will need one of the shoes get an insert. I am not really an excersise girl so I do what I can. No pain from the hip so think all is well there. My first visit to hip surgeon he made a remark that normally he would have me in a "pool" at that stage but hell no. This girl isn't a pool kind of girl unless I am in a beautiful pool in a beautiful hotel in the beautiful country of Thailand. The only reason I limp is cause of uneven legs. Hope you are going well and things are going better for you. Jean

I am still waiting to hear about the colonoscopy appointment. The tummy pain has eased off and yes I agree could be the aspirin and also I was on other meds while in hospital too. Hope the leg raiser trick helps a little. I thought at first that I maybe could get by with skipping some of the exercises but I think they actually have helped. Im doing a lot better now. Hardly use the walking canes only when I go out for stability. Not sure what they were coated in and because I am off them now I do not have the name of them to check. Thanks for the comment. Tell your husband there is light at the end of the tunnel. I think I am nearly 9 weeks post op now and doing most things my self. Regards Jean

I am booked in for the Colonoscopy for this coming Friday 21st June. A bit nervouse but probably not the worst thing I have had to deal with. I just put another vid up about the lead in to the surgery and the prep work needed. I would love it if you could check it out.

Thank you so much!

Thanks for the message. I am 6 weeks post Hip Replacement operation today and 5 weeks from the start of the Vasculitis. We are seeing big changes in the legs now and most problems are just on the feet and ankles. Slowly repairing and so thankful the end is in sight although then starts vigilance as this disease can affect kidneys lungs joints etc. A 6 week post op video coming soon.

Thanks for your comment. Gosh that is a bad dilemma to be in. Im not sure that the solution that my Neurologist and my surgeon came up with was a good one or not. So far, I have taken 100mg asprin for about 38 days and today was the last one I have to take. So far so good but now that I am about to stop I am not sure that my risk of Clot will be zero. I guess I will just have to stay vigilant. Your mum has a lot against her I guess. Age for one thing, General Health, How bad her CAA has been and the amount of bleeds she has had. The pain of the hip ( mine was arthritis related) was life altering for me and the quality of life I was having was low, I felt. I am sorry for this situation. Does your mum take pain killers? Has her Neurologist got her on all the pain killers he can safely give her? If not you need to ask him. Don't be afraid to challenge him. I know they say quality of life over quantity but those decisions are hard to make. Do you see a specialist for the osteoarthritis? If not get her to see one and get the use of all of their experience. I hope that soon she will be able to find better medication to help with the pain.

​Hi Jean yes my mum is on Zomorph 10mg twice a day and paracetamol and also now supplements that with Oramorph 4 times a day. We recently saw a pain specialist who is putting mum on morphine patches and introducing a morphine holiday for 1 week every 3 months. Mum has seen an orthopaedic surgeon who said the hip surgery itself would be very straightforward and he gave her a steroid injection that worked for about 3 days only. He's offered to do that again but we're sceptical as it didn't work the first time. She's also seen a haematologist who said the risk of having surgery without blood thinners is too high and she would need to be on them for min 10 days. We have an appointment with Prof Werring at the end of July to hopefully pick his brains about the risk of more bleeds. Her quality of life is so impacted. Her mobility now looks very similar to your mobility just after your surgery. It's very tricky all round but I think we're doing everything we can and just hope Professor Werring can help provide a second opinion of the risk of a bleed if she had surgery.

@@Cobs77 Hoping for good outcome for you Mum.

So sorry to hear you are going through more problems , I hope they get some relief for you soon. Looking at your pictures, I had the same looking thing on my lower legs from doing a lot of walking in the heat of Italy and I had no idea it is associated with CAA. Sending better luck to you!

Hi there. Thanks for the comment. I think we have ruled our the Vasculitis (Leg issue) although an auto immune diseace we don't think it was caused or associated with C.A.A (I see my Neurologist in a couple of weeks but think he will agree). One less thing to worry about. I am now heading towards a Colonoscopy on Friday to sort out why they found blood in my stools when I was put in hospital at the start of this rash. It seems never ending but I guess thats life . The legs are getting better too so that is good. Stay safe and have a good one. Jean

Slowly, Slowly.

You are so welcome!

I am always thankfull for your comments my friend.

I have a long journey ahead as the rash turned into something nasty. Keep watching and thanks for your comment

Thanks so much

thanks for the comment. Keep watching as this journey takes a very unexpected turn

Thanks for the comment. keep watching as it all takes a very unexpected turn.

Hi Tony, Thanks for the comment. I think he wants a PET scan as a starting point for seeing how i actually progress. (Even though we are years in) I initially didn't go ahead with the PET scan as I didn't actually feel right about having it but he has asked me to reconsider and I have decided that when I am well from Hip Replacement and the alergic reaction I had from Asprin, I will go ahead and do it.

Hi There. Yes I have had substantial amount of bleeds and according to my Neurologist "to many to count" Luckily they have not caused to much damage so far. Mild cognitive impairment, unstable when walking. First symptoms occured in 2014 and I was diagnosed in 2020. I am at my 10 year mark this year. It is an inclusive club that no one wants to be a member of. I hope you are doing ok and managing if you are the one with CAA and if you are a carer then on behalf of your loved one, thank you for being there for them. Regards

Thank you for taking the time to answer. I assumed that you must have had at least some bleeds over all that time, but I was surprised you didn't mention that, but I have not watched all of your videos yet. Do you remember when you had your first bleed? Was that when you started your countdown clock? Scary stuff, right? But like so many serious conditions, the unknown can be the hardest part. I am the one with CAA and was just diagnosed this month, so I am still trying to process. I feel like I'm in a nightmare at this point. I've had 3 subarachnoid bleeds this month, along with all of the other symptoms you mentioned. But the bleeds were the doctor's main concern and what got me a fairly quick diagnosis. Thank you for posting these very personal videos and know that they are extremely helpful to me and I'm sure many others as well. ❤@@mycerebralamyloidangiopath4710

@@mycerebralamyloidangiopath4710 Thank you for taking the time to answer. I assumed that you must have had at least some bleeds over all that time, but I was surprised you didn't mention that, but I have not watched all of your videos yet. Do you remember when you had your first bleed? Was that when you started your countdown clock? Scary stuff, right? But like so many serious conditions, the unknown can be the hardest part. I am the one with CAA and was just diagnosed this month, so I am still trying to process. I feel like I'm in a nightmare at this point. I've had 3 subarachnoid bleeds this month, along with all of the other symptoms you mentioned. But the bleeds were the doctor's main concern and what got me a fairly quick diagnosis. Thank you for posting these very personal videos and know that they are extremely helpful to me and I'm sure many others as well. ❤

@@bissells I think making a time line prediction from time of diagnosis cannot really be a true time line when you have had the symptoms for years. My Neurologist believes that I did have it back in 2014 just was not able to give it a "name"

Thank you so much. We are getting closer to tentative surgery date. I just put up another video too

Thanks Trudy. I am a long way off from Surgery as I need to wait and see my Neurologist but I hope it gets sorted. I am thinking May or June. Take care

Thanks Trudy