Spinal cord tumour

[Ka_mum38]

Hi I’m new on here. I’ve been diagnosed with a spinal cord tumour so high up that it’s too dangerous to biopsy. I get rescanned to monitor the growth and at a certain size the neuro surgeon will operate. It affects most of my organs because it affects all the brain messages to the nervous system and I get a lot of pain. I have problems with walking, heart rate, blood pressure, stomach, bowel and bladder. I just wondered if anyone else on here has the same and what advice/treatment they have been given. Thank you

[TMT1D]

Hi there I don't have a tumour but I do have inflammation at the top of my spine and I have all the symptoms as you have

At first they also thought it was a tumour but I was lucky so I can imagine what your going through

I'm a year in and I was ment to be better but still the same just a little bit stronger than I was but it looks like I will have a couple of symptoms permantly bladder/bowel and loss of strength throughout my body but badly in one of my legs some body tingling and hand and feet cramps it's a bit like ms it's transverse myelitis if you look it up and ask your doctor about the possibility of it being that as there is a chance of a full recovery as this is rare most of the doctors and gp had never heard of it

Hope it helps

[Ka_mum38 in reply to TMT1D]

Hi thank you for your reply and sorry I’ve taken so long to reply back. I’m the reverse to you, doctors thought I had inflammation to start with but it never changed on scans even with strong courses of steroid. I now have a neuro surgeon who has looked at the recent scan and thinks it’s between two tumours with too complicated names to remember. Do you get regular scans? I get scanned every three months and I was diagnosed like you a year ago. I would be interested to compare tablets to see if we are on similar and anything else you have for treatment?

[TMT1D in reply to Ka_mum38]

I get a new scan if I feel and difference in how I feel or any new symptom. All I am on is stuff for pain to help manage and physio there is nothing they can do for me as inflammation if not something they do operations for .

Oxycoden

Naproxen

Pregabalin

Duloxatine

Paracetamol

Ibuprofen

Are what I'm on also been on a lot more amatriptalin

Co codomol tramadol and gabapentin

I'm also type 1 diabetic as well and have to take insulin with meals and a long acting one for through the day .

I'm assuming we will be on roughly the same meds and have the same symptoms

[Ka_mum38 in reply to TMT1D]

Thank you for sharing that. It’s helpful to know we are on roughly the same tablets. You must feel frustrated with it all at times the same as me. I get physio and I also go in the hydro pool every other week which helps keep the strength in my legs. Apart from that I’m the same as you. No treatment options except surgery if and when it grows.

[TMT1D in reply to Ka_mum38]

I've had a few hydro pool sessions to but there is a chance mine's might sort itself out but be left with issues or could develop in to ms.

[Ka_mum38 in reply to TMT1D]

Fingers crossed you get sorted rather than MS.