deejames

There does seem to be a lot of confusion here. Why was a second MRI ordered so soon after the first and who was it that ordered it ? We're there worsening symptoms or new ones?

It is not easy if there are conflicting medical opinions. I would,d wait to see the surgeon and have a list of questions prepared for him. If necessary you might end up asking to see another ortho surgeon at a different hospital for a second opinion . It is your right.

You will know more after the appointment. Could you find someone to go with you and write down what is said ?

Hope it goes well

Dee

Trulysad-76 in reply to deejames

Hi Dee they have made it very difficult for in the sense where they made the appointment yesterday afternoon for first thing this morning.

All I know is since I've raised questions with the patient liaison I am getting treated very sternly.

I find this quite intimidating but I am waiting patiently as I write this to see the surgeon.

I haven't had time to prepare anything so I'm going in with little more than the questions I have in my head.

First question being why for 2 yrs have you said I needed surgery and now I have been told by the pain clinic I don't. The support I get at home is varied, something isn't right and I want to know what.

Many thanks for your reply, I appreciate it 🤗

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cyberbarn

That is good news that there isn't any compression. It could be that the pain isn't being caused by the bulging disk. Lots of people have them and don't have pain.

Surgeons generally like doing surgery, so I am not surprised that he told you to go away until things got bad enough for you to want surgery.

It could be that your disc hadn't got any worse and it might actually not be that that is causing the pain. So it will be good to get his opinion again, but remember, a surgeon can only recommend surgery, they don't do all the other good stuff like exercise to strengthen the muscles supporting the back, improved posture, and other non invasive things.

And what to say to him? Just give him your symptoms, and tell him the results of your more recent scan.

Good luck!

Trulysad-76 in reply to cyberbarn

Thank you so much for the reply, with little more than 12 hours to prepare I am kind of going in blind.

I am waiting as I write this to see what he says and to question him. I will be replying once I've seen him 🤔

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Trulysad-76

Well here is the news. After demanding (in a polite way) to see my MRI from 2015 the surgeon told me he can't find it. He then goes on to show me the new ones and says it's just bulging and that it is my "straight neck" that is causing pain not anything else. He fails to remember I have CFS and Raynaud's disease as well.

How do you loose an MRI scan when he showed me it last year as well as the year before. I tried to explain that the pain is depressing me and that I have pain lower in my back, my knees and burning in my hands. I don't know what to do, I don't know whether to leave it or persist and fight. Not sure I have the energy 😣

cyberbarn in reply to Trulysad-76

It is not uncommon for computer systems to change and things like that to become difficult to access. So I wouldn't be alarmed about that.

I can't remember but what have the pain clinic said? I think you mentioned you had been to one?

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Trulysad-76 in reply to cyberbarn

I have had a 2nd MRI which is similar to the first but not as bad. I still according to them have problems, 2 bulging discs and a straight neck. In the first MRI it showed a complete collapse of my disc in C6 and the stuff inside of C6 had leaked out on both sides and C5 on its way out. This was described as a serious problem and surgery was offered which o declined due to the risks. Can you see why I'm very confused. They don't mend themselves, once they are gone, they are gone? X

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Rosepetal60 in reply to Trulysad-76

Do you still have the appt letter for the first MRI ? With info and the address. Because they should have a record of where it is filed. It is sometimes a private company that do the MRI scans on a Lorry. Even at this late stage you maybe able to pay for a DVD copy of it yourself for a fee of approx £35 Even if it was not by a private company, you may still be able to pay for a copy of the MRI and if so, they will have to find the MRI . I've had some of my notes go missing in the past for various reasons.

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Trulysad-76 in reply to Rosepetal60

I'm quite upset, what the surgeons now telling me is that my neck is healing itself and I now have straight neck. I found very convenient that he couldn't find my MRI scan. I have the letter yes and it was a private company with Virgin Care so I guess I will have to go there and ask for a copy and pray they have one.

Clearly there is some sort of cover up going x

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cyberbarn in reply to Trulysad-76

" Don't ascribe to malice what can be plainly explained by incompetence"

It is well known that scans done by private companies aren't shared with the NHS. This isn't a cover up or malice, it is because they aren't using the same computer systems. My GP stopped using the private company (run by a group of GPs and commissioned by the CCG) to do ultrasound scans because they were having problems getting the results of the scans, so that if the scan indicated that someone would have to be referred at a consultant, the consultant would then have to have a second scan done at the hospital just so that they could see the scan.

And yes, our bodies can heal themselves. One of the problems though is that once the brain thinks that there is pain, even after the body has healed it still thinks that there is pain there. this could be what is happening to your neck and why physio might be a better treatment, especially as you weren't keen on the surgery in the first place.

It could be that you have ended up with a straight neck because of muscle tension when you were trying not to move your neck due to pain. So if you haven't had a referral to the musculoskeletal service yet, now might be a good time to ask for it, or if you can in your area, self refer.

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Trulysad-76 in reply to cyberbarn

Hiya thank you so much for your reply. Is there any chance you know much about straight neck? I am not coping with the pain at all 😔

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cyberbarn in reply to Trulysad-76

A straight neck is where the normal and natural curve of the neck isn't there. It can be caused by some of the muscles been too tight, or not strong enough. Many people will have a degree of this but won't have any pain from it, but other people will experience pain.

The main treatment is exercises to strengthen the muscles of the neck and to improve posture. Which is why I suggest you get a referral to the musculoskeletal service. They will be able to match you up with the appropriate physiotherapist.

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Trulysad-76 in reply to cyberbarn

Thank you for this, this is very informative and will see if there is some exercises related online as I'm not sure I want to go back to the hospital where I'm currently being seen x

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Rosepetal60 in reply to Trulysad-76

There should be a telephone number on the appointment letter for you to phone about a copy, which may save you a journey. I ordered mine by phone. I think a form I was sent out to me to and I presume I paid by cheque

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Trulysad-76 in reply to Rosepetal60

Thank you Rosepetal, I think it's the only way forward now as something isn't right

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