Fed up with medical things

I am under 4 different consultants for various autoimmune conditions plus a heart problem. Over the last 8 months I have been in and out so many times it feels like I have a loyalty bard for my hospital! But at least I am getting really care and treatment, it has taken me a long time to get it and each time I questioned or asked for a second opinion until it was sorted.

Caleo

Gentle Shores, excuse me but I thought the following may help you to choose what to think and do.

www.google.com/search?sca_esv=599b8d6373705053&rlz=1C1CHBD_en-GBGB739GB739&q=is+age+66+too+old+for+cartilage+repair+surgery&spell=1&sa=X&ved=2ahUKEwjB-4HjloSNAxUyVkEAHUmAKDoQBSgAegQIDRAB&biw=720&bih=471&dpr=1.75

Thank you. Exactly - I have googled the same. I'm beginning to think I'm coming up against regional apathy and ignorance. Maybe I should go to London. However I am "deconditioned" now. Because I've been left so long.

I agree, lafergar. Acupuncture ,although it is not a magic cure-all , is specifically for pain relief.

People shouldn't be left in such pain and misery. Terrible.

Acupucture is well worth considering I think.

Gentle Shores, excuse me but I thought the following may help you to choose what to think and do.

www.google.com/search?sca_esv=599b8d6373705053&rlz=1C1CHBD_en-GBGB739GB739&q=is+age+66+too+old+for+cartilage+repair+surgery&spell=1&sa=X&ved=2ahUKEwjB-4HjloSNAxUyVkEAHUmAKDoQBSgAegQIDRAB&biw=720&bih=471&dpr=1.75

Marydoll, I am glad to hear about your appointment

GentleShores wrote:

"------but to me, when it's a damaged joint, it needs repairing!"

In my opinion it's best to rely on the experts . I simply chose the experts I like most.

Caleo

Whiff has reason to her suggestion. The physiotherapist who gave me exercises for my relief failed to understand I had osteoporosis. her exercises did more harm than good.

I'm not seeing that physio again. Once she referred me she said I don't need to come back. The solutions offered are zero. Go back to your GP. GP says go back to physio. I've been going round in circles for over 3 years! And even when you get a Consultant appointment, it is - go back to GP again. Take painkillers (they don't do enough).

This is why people need to seek alternative help but to me, when it's a damaged joint, it needs repairing!

One criteria that would have meant they would probably do surgery on my knee was if it locked. Now the irony there is - I could make it lock, just by kneeling. Of course I have avoided doing that because I don't want it to lock!

@Whiff. It was mentioned to me by the A&E nurse to ask GP for a dexascan. I have asked before and get nowhere! I might try again. Unless A&E notes put it in writing I doubt GP will order it. I do have some bone thinning on my foot x-ray apparently.

@Calco, I'm not laughing about reflexology. I was a big fan of it - and it can help for some things. Unfortunately I can't have it any more as too many foot issues in left foot and morton's neuromas in both feet!. I might look into acupuncture though and also some homeopathy.

I'm also a big fan of Osteopaths, but can't find one in my area. I'd probably have to travel a long way. There is one - but their place of work is inaccessible! Up three flights of stairs and they don't do home visits.

I've always been a bit wary of chiropractors though - have heard some scare stories about things going wrong. Osteopathy is a bit more gentle and holistic I think.

Marydoll

I have just experienced a positive interaction with the NHS.
Yesterday, I phoned the hospital Rheumatology helpline in despair. Later I received a text informing me that I had a telephone appointment. at 9am appointment.
An hour later this morning, I received an emergency appt. for Thursday. I could have wept with relief.

Well done! So pleased for you :-)

I have just experienced a positive interaction with the NHS.
Yesterday, I phoned the hospital Rheumatology helpline in despair. Later I received a text informing me that I had a telephone appointment. at 9am appointment.
An hour later this morning, I received an emergency appt. for Thursday. I could have wept with relief.

Whiff has reason to her suggestion. The physiotherapist who gave me exercises for my relief failed to understand I had osteoporosis. her exercises did more harm than good.

GentleShores, I share you anger at NHS staff, such as that stupid overthinkinking nurse, who leave you feeling worse than ever.

I am particularly concerned about the physiotherapist who seems to have disregarded your pain after the exercises.

In my personal experience skeletal problems are better dealt with by a bone person such as an osteopath than with a muscle person such as a physiotherapist.

I do hesitate to imply that I know more than professionals at any time, but I ditched physiotherapy in favour of osteopathy and chiropractic, even (don't laugh) reflexology---resulting in literally a cure.

Admittedly my problem was much less complex than yours--I had only a misaligned hip/spinal joint.

You also seem to need a rethink about the use of your house so it better suits your requirements.

Eg a second -hand stair lift. A commode or downstairs toilet. A shower instead of a bath , and so forth .Your local occupational therapist would be able to help and advise pertaining to your particular needs., and help to obtain equipment.

I too have found the medical secretary of a consultant a empathetic and knowledgeable person to talk to .

gentleshores just a question have you ever had a Dexa bone scan or tested for osteoporosis? I know it's an odd question and you mention the pain in your ribs is caused by other things .
My mom started having rib pain when she was 50 and had a bone scan and diagnosis with osteoporosis.

I had more pain walking due to my hereditary neurological condition after Dexa bone scan have Osteopenia in my left hip . Doesn't mean I will get osteoporosis.

Just an idea .

Check NICE guidance

I've also been googling France. Better medical service, stem cell treatment and probably less likely to be ageist.

There is some noddy medical theory behind all this, which is - protect the cartilage at all costs (ie don't trim it or remove it) or it can cause arthritis. And even having an arthroscopy can speed up arthritis. But I don't care! I don't care if it causes arthritis if it fixes my knees (and it does help because others have had it). Because this is just as bad as having arthritis!

As an explanation I have cartilage tears in both knees. And I am expected to live with not being able to walk and being in a lot of pain if I stand or walk - at the age of 66 - with no treatment offered. It was confirmed again, that there is virtually no arthritis. Therefore not eligible for knee replacements.

An update. Today was my Orthopaedic consultant's appointment - NHS. Only taken me 3.5 years to get this! After pushing with GP (who said they can't refer, go to physio and they decide to refer) and finally getting a physio to refer me. Physio had said - they're not going to do anything. I said - but I've asked Southampton about stem cells and they said get a referral. So she referred me to the local Orthopaedics.

So today I went in fully expecting to get dismissed. Which is exactly what happened. Same story. Said it's normal for my age. (which is head messing because it isn't!). By that they mean people of a certain age, cartilage tears are quite common, and can improve with physio. However mine were caused by INJURY! If I was man of 40 who did sports I'd have been straight in for an arthroscopy.

The Consultant was at least a nice man. But I had an unpleasant shock as he said he'd read the last consultant's letter (this is the traumatic appointment I had last year that I paid for privately and it was a truly terrible experience it took me ages to get over). Rude, sexist, and downright nasty. I felt bullied and belittled - I had another thread on that last year - and don't want to go over it all again - but I knew he was going to write an awful letter afterwards, because at one point I stood up for myself - rather than sit there and be spoken to so badly. And sure enough the letter was awful. And also had lies in it! Said he'd said and done things he hadn't. Anyway without going on about all that again (and I did write to GP surgery telling them this letter was wrong, it was an awful appointment and the letter is full of mistakes). But GP surgery said - well we haven't even received it. So as far as I knew it wasn't even on my file. How could it be if GP surgery didn't receive it and it was only sent to me and was a private appointment?

But the Consultant today mentioned it twice and asked why I had wanted to see someone else. That threw me. I was on the examining table and wasn't prepared for that, and I couldn't really say - well he was a psychopath and it traumatised me and his letter is all wrong. So I just said - well we didn't get on and he told me to do physio. Which I have been doing.

Anyway this has not helped at all that he saw that letter full of misinformation (which I had tried to correct later).

And the Consultant today just went with the same opinion "normal for someone of your age". And as a surgeon, nothing he could. But I am now thinking this is bad as he said - this was for a second opinion yes? So I nodded. And he was clearly not going to contradict the previous man. They probably know each other! Should have gone to another private one in a different region!

But the main reason I wanted today's appointment was to ask for the referral to Southampton for stem cell injections to repair the cartilage. I needed that referral. So I was expecting to be dismissed. So I asked about the referral. And this is is the issue. They don't even know what it is! GP doesn't know about stem cell injection therapy. And this Consultant said - well I can't refer you for something that doesn't exist - and seemed to think it was some hypothetical thing that hasn't been tested. But Southampton NHS are a centre of excellence for it.

Then he said you'd have to ask your GP for that referral. I said the GP won't do referrals so I thought maybe you could refer me.

Anyway didn't get the referral. I did still push a bit when he said - same advice, nothing for him to do and I said - well that MRI scan was last year, before everything got worse, when my knee went out and I was stuck for 3 hours until the ambulance came and gave me gas and air and I got it back into place again. And since then I can't twist my knee in the slightest in case it goes out again and have to sleep on one side in a knee brace to stop it going out again and it gives way sometimes.

As I say he was quite a nice man but said well clinically I can't send you for another MRI because I've seen the previous one and I've examined you and I've decided there's nothing surgically to be done. I still pushed and said but I'm sure something else has happened since then. He said well I am not supposed to do that. So I said sorry. He said if I did it would be because you want one, not because I think it's clinically necessary. So I said sorry again. And then tried to persuade him that I really do think there is more since the last one, In the end he said ok - but then said - but only because you want one. And that means I then get a follow up appointment afterwards.

So for the next appointment I will go prepared to explain to him that there is a problem with that other Consultant's letter he read that was rectified when I wrote to the surgery and perhaps he hasn't seen my response. Some may have been audio typing error. But how do you explain to a Consultant, that another Consultant was just a nasty misogynistic bully - who clearly didn't like confident women.

I took OH in with me this time after my last experience. That was quite funny as the Consultant said. Who is this? I said my OH. Do you want him here? I said yes. He said well that's ok because I thought it might have been a taxi driver or something (ha ha). As it happens a nurse was there the whole time so there was no need for OH.

So my next task is to try something legal with the GP to get this referral to Southampton.

😯
Come on Rab, you can do better!!

Well, the orthotics aren't brilliant but I think they do help, but I do sometimes wonder if my knees and hips got used to being in a certain position for years without orthotics.

Allira

My orthotics are quite comfortable, Marydoll, made (well, customised) by the orthotics section of the podiatry department.
I do wear rather boring shoes, trainers and boots and Mary Janes in the summer. Occasionally sandals if it's very hot.

I have various custom made orthotics over the years, unfortunately they have never really helped.

What does help, are ankle support stockings. The only problem is, I have to rely on DH to get them off again and he is not exactly gentle!

Dress? What are they? 😃

Apologies for going off at a tangent but I was very exited the other night to find that they are now making Mary Jane style Crocs. Which means ( given that I live in Crocs, trainers and Ugg boots) I will be able to wear a dress occasionally!

My orthotics are quite comfortable, Marydoll, made (well, customised) by the orthotics section of the podiatry department.
I do wear rather boring shoes, trainers and boots and Mary Janes in the summer. Occasionally sandals if it's very hot.