20 replies to this topic

[123]

I was just wondering if I was the only one as I feel a bit left out...Mine's a T3-6 neurofibroma (which I think is the rarest type).

[Tetracyclone]

There are many more but you will have to wait a bit for them to see this thread.

[spot]

I found this fairly quickly.

Cerebral Cavernous Malformation (Angioma)at C1/C2. Uncommon, but not rare. Normally a problem in the brain, more rare in the spinal cord.

[jane]

I had a Cavernous Heamangioma in at C4, some of it still there!

[123]

Hi guys,

Thanks for the replies. How are you all doing? I'm mobile but in great pain and going through the rigmarole of trying different drugs. It's been a long haul and I'm still getting used to the new 'life'.

[sherbs]

Hi

i have a spinal cord tumor, Ganglia Glioma, supposed to be pretty rare, diagnosed 18 yrs ago, when I was 29. Still got it in there, the neurosurgeon could not remove it, just ended up getting a small portion out as it is wrapped around the spinal cord, Had a 10 hour operation to try to remove the bugger, Its been a long hard slog, I can still walk, well sort of, wobble around as if drunk, but this is getting progressively worse, so I use a wheelchair for longish trips etc. Well have only been in the wheelie a few times, its a big transgretion finally admitting that I am really stuggling to walk.

The pain is getting to me, its awful, seeing the Pain Consultant at Queens Sq. in April again, to see if he can recommend any more poison to help.

If you need any questions answered or just to chat, plese do contact me

Best regards

[Stickman]

I had an Ependymoma at t8-t10 taken out 4 years ago. you'll get used to it. most of the time i dont even remember that im in a chair.

[123]

Thanks for replying. Stickman, it sounds like you're adjusting well. I seem to be a bit better when I'm distracted, perhaps this is the key. I keep waiting for the time when I come to accept what has happened (not good when the pain acts as a constant reminder!!).

Sherbs, I've sent you a PM. I hope your Pain Consultant can help you out next month.

Best wishes,

Leah

[Halfman]

I've got an intramedullary astrocytoma. Surgery, radiotherapy and chemotherapy haven't managed to shift it. There is a dedicated Spinal Cord Tumour Forum site (www.spinalcordtumour.org.uk) but I've always found it a bit depressing to read as everyone seems to be in the same position of not knowing anything about it!

[123]

Funny you should say that. I've steered clear of that place for a while now as it put me on a bit of a downer. I much prefer it here - at least you can have a bit of a laugh! Sometimes you want to talk about something other than 'disability'. That would just be too boring...and depressing.

[sherbs]

your right, I did have a look on that site, but found it a bit depressing too, as the Consultants I have seen, dont have much evidence of how these tumours come to be, except most are from birth, but they dont manifest until later on in life, usually in your 20's, and they never have any firm evidence of how it will progress, much of it seems to be quess work, especially 18yrs ago, when mine came to light, i was a real puzzle for them, and still am, hey ho, much fun,

[123]

Are they? I didn't know that. My neurosurgeon has said several times that my tumour was very large and had probably been there 'years and years', so I'm guessing I must have been in my teens or younger when mine first developed. I used to think it'd maybe been caused by bad posture as I've always had a terrible habit of hunching forward. There's still so much I don't understand about my case - my tumour was compressing my left lung, as well as my spinal cord, and the remainder has been left in my aorta. I've been almost guaranteed I won't need further surgery on my spine as they seem sure it will grow back into the lung - I've never heard of a situation like this before.

People on the SCTF website all seem to have multiple tumours which is scary; it's also another reason why I've stayed off it. I got a bit paranoid thinking I would end up plagued by a catalogue of new growths and masses all through my life!

[sherbs]

I think a lot of it is guess work, like your Consultant said, yours has probably been there for years and years, mine said the same, probably from birth as it is so tanlgled up in the cord that they "assume" it has been there from birth, and sort of scratch their heads as they say it!!. but for some reason we carry on as normal until one day it may just grow that tiny mm enough to cause problems, mine was a numb left leg, just for no reason my left leg went numb, and that was it, and the rest is history

[123]

I woke up one day barely able to walk. Completely out of the blue. From there on things deteriorated rapidly and within a few months I could barely stand up aided. I don't know how I managed without a wheelchair - I had to 'live' in my bedroom for a while. The doctors thought I had multiple sclerosis and put me on a long waiting list for a referral. In the end I paid privately and the MRI picked it up straight away. I was admitted to Charing Cross 3 days before Christmas as an emergency (I had hyperreflexia and had trouble passing water, amongst other complications). When I came round from surgery I was completely numb from the chest down and couldn't even sit up in bed. Never washed for 3 months. Could hardly walk for a year. Total nightmare!! And it still hasn't finished!!

[sherbs]

So glad you went private, as it can take ages to get an mri, you done the right thing as if you had waited, things could have got worse!!. Its a long road to recovery, i couldnt walk for a year, and just getting over the surgery was a nightmare, but eventually things evened out, and just had to accept this is how i am the "new me", my husband bailed after a few years, well he stuck around but was having an affair, so that was that, just me and my son against the world, but things do and will get better, it will just be a different kind of life now. You are very brave and i commend you on your fight to get back up and get walking again.

Take care

Shirley

[123]

Thanks, Shirley, and good luck with your appointment in April.

PS: Who needs men???

[Halfman]

123, on 16 March 2011 - 10:00 PM, said:

PS: Who needs men??

We're not all bad!

Interesting points about it being there since birth, not heard that before. I just started getting back pain and knee trouble, after a while they decided it was a disc problem, MRI found otherwise.

The one thing I find hard is going between my oncologist, spinal consultant and neurosurgeon who are all great in their own fields but don't seem to understand the bigger picture. Am so grateful for all the help I've had from the NHS over the last three years.

[angel888]

Hi!.. the reason for my spinal cord injury is a tumor.. not sure what level but it was neuroblastoma. Three major nerves were cut from my spine then went on cobalt treatment. I've had it when I was still a baby.

[123]

Hi Angel,

I haven't heard of cobalt treatment before, I do hope it was a success for you.

I've heard a few people say they were born with their SCTs or developed them early in childhood - it's a shame they aren't picked up sooner, before they reach the point of causing irreversible neurological damage. I wish they would do more research!

Leah

PS: I hope those goosebumps aren't bugging you too much.

[angel888]

Hi Leah!

Yeah.. I hope they did but i also don't think they had a choice. Just like yours, it was a rare type. It progressed rapidly as it was discovered on my third week and got operated on on my 1st month. I was born with complete motor movement but on my third week, i was already unable to move my legs. The cobalt treatment was a radiation therapy. It was a success for me as I haven't got it again ever since. Im not sure though if it is still used up to now. I had it in 1988..

With the goosebumps, im now awake at 6:00 am because of it. Hope it goes away soon..

Angel..

[wheeliebear75]

Staying not just busy but BUSY is the best way to keep going without having to put yourself into a drugged stupor OR hibernate the whole winter long.

Nope no tumors....the "lump" was to the head (falling object fell down crushing my head & spine)