Thanks Jolamine, 

Thank you so much for replying.

I am planning on contacting the secretary again today. I have been told by them twice that my last MRI results are in, but my consultant was not! However he is now, but still no word. I haven't had any biopsies taken as they say the lesion is too close to my sciatic nerve, so it has only been imaging studies. I wish they had, as I know it is the only true way of knowing what this growth is. If this goes to another MDT meeting I don't know if I can cope, as it takes them an age to get back to me - the same secretary last time post MDT meeting said she would copy me in to the GPs letter, it took them another 2 weeks after this call to send it!,(6 weeks in all) and she would not tell me anything. Noone is talking to me. I am waking most nights with gnawing pain in my back (it is 3.22am as I write this) - I am lucky if I get 6 hours at the most. I can't travel for more than a couple of hours without getting the same pain as I now know that this thing presses on my nerve more when I sit down in a position that is fixed. I am just a total wreck at the moment.

Hi Songbird,

I know that it's frustrating, but try to be patient. It sounds as if your case may be complex and it may take the MDT some time to consider their options. The back is always complex because they are working close to the spinal cord and, they won't want to cause any further complications. Unfortunately, your consultant is the only person who can give you your results. The other staff ae ot allowed to say anything until he has done that.

I know just how frustrating this can be. My son broke his neck in 2019. He had an operation to stabilise this, but now has trouble with a disc in his lumbar region. They have tried steroid injections in his neck and back.to no avail and he is now waiting for an operation on his back. This is not without risk, but he is in a similar position to you - constant pain, can't sit, can't sleep, maximum of 15 minutes in the car, no feeling in his left hand from elbow down. He is hoping to be operated on early in 2022 - and this is as a priority case!

Have you been given any medication to control the pain meantime? You should have someting to take care of this.

Keep us posted.

Kind regards,
Jolamine xx

Hi Jolamine,

You are so kind to so many people on here (me included).

I did try to get my results today and spoke to one of the nurses, who couldn't help me, but she did say she would try and find something out for me. I do think it's more complex than they are letting on, but I would cope a lot better if I knew what was going on. 

At the moment I am just taking over the counter pain killers - as I guess they wanted to see what I had before they gave me anything. On a good day it's a hot water bottle and a couple of paracetamol (I have a fairly high pain tolerance) on a bad day I take co-codamol but I use it sparingly. Sometimes that doesn't touch the pain, and I just have to work through it somehow.

I really feel for your son, what I experience is nothing in comparison. I hope all goes well for him in the future. 

Hi Songbird,

It sounds as if the nurse that you spoke to today was more helpful. I hope that she manages to find out what is causing the delay and can get things moving for you.

Yes, we are all anxious about my son's operation, but it has to be done.

Kind regards,

Jolamine xx

Hi Jolamine,

I phoned the hospital again today as I still had no word from anyone, spoke to a very helpful admin who tells me there is a letter in the pipelne (Dr who I am under only works 1 day a week) it's not been signed off yet, but will be sent when he is in again, but I have a face to face appointment on the 24th November. I am really quite relieved that I will finally get some answers! xx

Hi Songbird,

I am delighted to hear that there is a letter there for you at last and that you now have an appointment for 24th November to see your consultant. 

Please let me know how you get on.

Kind regards,

Jolamine xx