Well that's me off my bike for a while

[Ganymede]

I'm hoping you will be reading one one Wednesday! can't say it will be far, or a long one but...

But yes, it does sound like further surgery is needed and soon by the sounds of things. It isn't feeling too go from my end and I know enough to know that things are not great and not going well. At least I was able to bring my appointment forward by 2 weeks. I just hope that nothing else "appears" in the way of symptoms before Thursday.

If it helps, my bro-in-law had an op to fuse his vertebrae and it worked extremely well. I see him running down our lane from time to time... So surgery may be just the thing.

I have been contemplating surgery for a much more minor problem - a shoulder thing - been avoiding it with physio but I've bitten the bullet and since deciding have met several people who've had the same op and never looked back. It could be ahead!

 

[Shut Up Legs]

If it helps, my bro-in-law had an op to fuse his vertebrae and it worked extremely well. I see him running down our lane from time to time... So surgery may be just the thing.

I have been contemplating surgery for a much more minor problem - a shoulder thing - been avoiding it with physio but I've bitten the bullet and since deciding have met several people who've had the same op and never looked back. It could be ahead!

No: and some .

 

[Glow worm]

It has been confirmed that Kevin is personally delivering the trike to me on Wednesday...

Has it arrived yet?!

 

[Scoosh]

I think hope @SatNavSaysStraightOn is a bit busy just now ...


[holding breath in anticipation

]

 

[SatNavSaysStraightOn]

Has it arrived yet?!

I think hope @SatNavSaysStraightOn is a bit busy just now ...


[holding breath in anticipation

]

Yep it has arrived. I've had to retire to bed whilst it is assembled. I couldn't manage to stand any longer... Test ride will follow soon after a rest!

 

[SatNavSaysStraightOn]

A ride will happen this afternoon along with some photos, but right now I am needing to lie down again and let my back ease a touch...

Also to whomever it was (not known to me , so I can't pm them), please read this...
https://www.cyclechat.net/threads/whoever-it-was-thank-you.175706/

 

[cosmicbike]

Full report either here or your ride today, I'll let you off if there's no photos, just this once mind

 

[cyberknight]

Cracking !

 

[Shut Up Legs]

@SatNavSaysStraightOn , just saw the ride report! I bet it was great to get out of the house for a while.

 

[vickster]

@SatNavSaysStraightOn hlw did you get on at the hospital on Thursday? Apologies if I missed the feedback

 

[SatNavSaysStraightOn]

@SatNavSaysStraightOn hlw did you get on at the hospital on Thursday? Apologies if I missed the feedback

you haven't missed it. I'm just having a seriously hard time dealing with it. It was shitty to say the least. Been really down and struggling to deal with things. lots of crying and tears and my OH having to come home from work because I'm a mess etc. Broke down badly on Friday...

I'm being referred to another consultant because she doesn't think there is anything more she can do for me. She doesn't think physio will help - though why I have no idea.
Once the shock and tears have subsided I have started to look into it and research the issue myself.
I'm going to start a diary of symptoms including the crunching around of my vertebrae which I think is the cause of some of my symptoms that come and go. I don't think she has taken into account my hyper mobility syndrome at all, so perhaps a referral to another consultant is a good move. I can have a talk with him a refresh and take it from there. She has however requested another MRI, this time with contrast. The problem is that I don't have many symptoms lying down. Most of the issues are when I and therefore my spine are vertical like sitting and standing.... so I'm not certain another MRI is going to help. but I wasn't really thinking straight at the time when she told me there was nothing more she could do and I was like this for life.
I'm going to start writing down questions as well... last time I had something like this, my hyper mobility syndrome was the cause of the problems as well and it took many years for that to come to light. the problem is is that it is not the NHS that has diagnosed my hyper mobility to it is not recorded in my medical notes.

Ironically I can deal with her saying I'm on crutches for life (but why physio would not help me learn to walk properly or at least better I don't know).
If the sitting issue could be dealt with, then saying I'm in a wheelchair for anything more than 200m I could handle. It is better than what I have now.
But saying I'm never going to stand again for more than 10-15 mins, never going to sit again for more than 2 minutes is not an option. period.

I have reached the conclusion a new consultant may be the best move. Fresh start and I can go in with a clear head and a list of questions this time. Does that make sense?

 

[fossyant]

Certainly get a list of questions together and anything you think might be of reference. It's hard to describe everything to a consultant and you are bound to forget.

 

[vickster]

Emma, I'm so sorry to hear that but I think your willingness to think out of the box is very wise. And respect to the surgeon for seeing her limitations too. I think it will be good to get a fresh pair of eyes and ideas. I've done it before with physio and it can certainly be helpful. I assume your consultant is prepared to refer you to anyone in tne country, did she suggest anyone? I'd be looking at the specialist orthopaedic centres, like Oswestry which has a spinal unit or the royal national orthopaedic hospital (although London might be problematic) who are tertiary referral centres. Your bupa access should speed up the process too

Have you seen a neurologist with a spinal specialism, I wonder if that might be worth looking into as well?

+1 on getting everything down on paper for the appointment. If you have any questions for the current consultant, don't be afraid to email her secretary with them

Good luck

 

[Ganymede]

Hi SNSSO, that's rough but don't give up. I've had someone say this to my Dad and he ended up having a hip replacement that was fairly straightforward. I think the idea of a new consultant and a list of questions - and someone to write everything down when you go, ie not just yourself, take OH or a close friend, or the hospital might even have a volunteer that you can borrow.

I have a minor issue but this is what happened - my shoulder consultant said the op would take x weeks to recover from, etc, all the details. I had physio for a while instead and then we decided I should have the op (in 2 weeks now). My physio said - change consultants, yours doesn't do arthroscopy (keyhole), so if you go to this other bloke you will have a better result and a faster recovery. Me: and I've now signed up with a different consultant. My original bloke was quite happy to do it in a less useful way. Turns out he is more of a knee and leg man, my new guy is an upper-arm guy - they just both come under "orthopaedic".

I don't quite understand why you're not being offered the option of fusing the vertebrae, I'm sure you've said something about it but I can't remember and I'm not asking you to repeat yourself just for my benefit, but make sure you get referred to someone who is a real specialist in your problem - ask around, eg physios. Try ringing a private health insurer under the pretext of doing it with them and ask lots of questions.

Good luck, rooting for you x

 

[SatNavSaysStraightOn]

She did name the person she was referring me to, but it went in one ear and out of the other. It was effectively immediately after she told me "this is as good as it gets!" not her exact words but...
I have looked at the list of people who are at the BUPA hospital I'm currently at and don't recall it being any of them, so I'm not sure. I will wait for the appointment to come through - like you said it should not take long. I haven't seen a neurologist. One thing at a time, I think. It would be good to get referred to Oswestry or Wrightington. I know Wrighington and it was a surgeon there who establish what the problem was last time. But one thing at a time. If this consultant is not helpful or prepared to listen to me, then I'll request another referral and take it from there.