Hi. It's nearly 3 years since my surgery to remove the chordoma . I have spinal rods and a fused neck. I don't know if I'm doing well or not? Ime very grateful for my surgery it's just that I still have pain in my shoulder blades and my head is still forward. I just wondered if that's right? Or will it always be the case?
Having never met anyone with same issue I don't know.
Karen
Hi Malaki
Thanks for getting in touch. My name’s Louise, one of the Cancer Information Nurse Specialists on the Macmillan Support Line.
People often wonder if they are doing well or not after treatment. As we don’t have access to medical records here on the support line it’s difficult to say whether it’s still right that you have pain in your shoulder blades and your head is still forwards.
We would always recommend that you contact your healthcare team with any changes or concerns. They are there to talk you through any questions you may have, even after treatment.
You can get in touch with your consultant or clinical nurse specialist (CNS) with any questions or concerns. They can be reached via the medical secretaries, who can be contacted via the main hospital number (switchboard).
They will be able assess your pain and the position of your head. They can also refer you to other services such as physiotherapy for example.
I can see you have joined a few forums on here. I hope you are finding the online community helpful. You mention having never met anyone with the same issue. It can really help to share experiences with others in a similar situation.
Cancer Research UK information on chordomas has a list of organisations that offer this type of support. You can also find support in your area.
It might also help to talk to us. One of our nurses would be happy to talk things through.
Best wishes
Louise
Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us.
Ref: LR/CF
Thank you. I will. 
