14 replies to this topic

[Halfman]

Has anyone had a cordectomy or know anything about it?

[airart1]

i met a man once that had it done to kill his spasms, he said he wished he'd never done it because it kills the chance of cure, because its cut into, but he said his spasms would literally knock him out of his chair he said, i had never heard of it either nor since just for spasms but this has been 18 years back so maybe the drugs have gotten better for his kind of thing, i assume they're going to do u because of cancer/tumor of some sort? then i would say your life would be worth more than the piece of cord they are taking out, best of luck and i wish u the best......

[edlee]

Havn't any experience with it, either,, but given the above choices,, you do what you have to do. My thoughts and best wishes are here for you
ed

[Halfman]

Thanks for your replies. Looks like this operation really is rare if nobody on here has experience of it!

[Tetracyclone]

I get one article from 1982 involving 10 patients;
http://www.ncbi.nlm..../pubmed/6948922

One from 2010 for cancer in one patient;
http://www.ncbi.nlm....pubmed/20061079

This unsuccessful one from Japan in 2001:
http://www.sciencedi...95&searchtype=a


Anyway, yes, so rare Doctors seem to write about every case they come across. You may receive notoriety!!!!!!!!!!!


Clearly this is a threat to life, and we shall keep you in our thoughts as you deal with it. Seems you get to read about most cases on-line, if you wish.

[davjed]

Is this the same as rhizotomy???????

[Halfman]

Tetracyclone - thanks for those links. I'd seen the first two but not the last one. The second seems spookily clear to my experience - similar age and previous treatments and I think is what the doctors are basing their intentions on.

Davjed - I think it's similar to rhizotomy, but actually involves the complete removal of the spinal cord rather than just selective nerves. I may be wrong on that account though.

[123]

Hi,

I'm really sorry to hear you've got bad news. I don't know much about the procedure, other than it's rarely carried out and involves removing the cord. I actually googled it to see if there were any stats on success rates or information on particular case studies - think I came across the same list of 10 as you all did. Has your surgeon carried out this procedure before? It sounds radical, but that doesn't mean it won't work; they're coming up with new techniques all the time that weren't even thought of years ago. It's a tough one. I'd do my research and speak to the actual surgeons who would carry out the procedure. Good luck and keep us posted.

[Halfman]

Since you asked to be kept updated I thought I'd post the latest. Also I'm stuck in hospital so going out of my head with boredom!

I doesn't look like they'll bother with any treatment now. I had a week of intolerable headaches then several days of seizures. They managed to get me an MRI scan and confirmed the tumour has spread to the brain. The drugs are helping with the headaches but not sure how long this will be. Pretty weird now I've finally accepted that the only way is down and not knowing how quick and in what way the end is going to come is very weird. Anyone got any suggestions on what to say to people about having a terminal condition. I know everyone will say to live for the day but it's so hard when you don't know what's ahead.

[pinkcloud]

Hi Halfman

Although I dont know you, your news tugged at me heart.

I was told before me operation that there was a high chance I would not make it thorough the operation. At that time I was in extreme agony, nothing was touching the pain and I was on the ward with ladies with brain tumours.

The operation was mant to be the next day, yet was delayed for another 2 days. Them two days gave me much understanding and acceptence. At that time, I would have welcomed death as a life full of this agony was too much. The doctors explained that my pain was equivalent to that of cancer. On that ward, I bonded well with the patients, away from the outside world we could chat freely, with others who understood what we were going thorough. The bad treatment we got from the nurses bonded us together closer as we would comfort each other. There were cries of pain and death all around us, sounds like I had never heard before. Or ever want to again. We all agreed that we would feel ok when we died, we did have our fath and that counted for a lot - however we also knew this was not for certain - and we didnt speak more on the subject. We knew we would be ok as we were tired, exhausted from the pain and to be released from this, we would welcome death with open arms. We knew we would be ok - it was our loved ones we felt sad for - as unless one has been in that situation, one does not realise how comforting this is for us. They could not understand that although our pain was horrendous, there is only so much pain the mind will allow us to feel before we actually pass out and remember only flash backs of it. They took the morphine pump off me an hour before theatre as I needed an urgent mri/ct scan. I sreamed in agony - then passed out. The general anaesthetic wasnt working when I got to theatre, they looked with slight panic - they injected more and out I went.


I awoke. Crying, shouting at me friend, a medic, who was at my bed waiting for me to wake. 'Why have you ###### done this to me, what gives you the right,I'm tired,all I am is the living dead, death isnt the worst thibg that can happen - this is'. I quickly got me head around this frame of thinking and realised I wasnt living this agony life for me, I lived for me sons, me family, me friends. Without them I certainly would not put meself thorough this agony everyday.

I felt at peace with meself them hours before I went to surgery. I had always told everyone I loved them, I always chose to think positive to get the best in life I could for me and me boys and I succeded. I had no regrets in life. Ok I never had found a loving relationship with a man but on the scheme of things that was very small. I felt I had been of some worth in me life as I hd spent it caring for others - and doing this well.

When the pain gets real bad, think of your nicest memory and if you can hold something soft or have something soft on your skin to bring comfort. Trust me it works and keeps the brain as free of pain as is possible.

I did explain to all I may die. The hardest to break this to was me children By explaining to them that if I did die, it woud be the kindest thing for me - as I would have spent a life like I was at that point. I explained that just like they talk to me on a telephone, so could they speak to me when I was gone from this earth. You cant see the other person on the end of the line but you hear they are there. I explained that everytime they felt sad by missing me, to replace that sad thought with a happy memory of me. That way although the future ha been took away from us with this injury - didnt mean it could have the power to take away the memories of me. I decided to tell all, they cried, they had the chance to tell me again they loved me and by giving them this option, they could tell me all they would say at a funeral, except the most important person they wanted to hear it from was me.

I did pull thorough. I walked when it was thought not possible. now I am at a point where I have deteriorated, and time to be strong to preserve any mobility I have left has come around again, I'm trying me hardest. too have a peace to know that no operation can help me and that no-one knows how I will be, my minds focused that it will be good and I can beat this injury. If not, I know that theres worse than the release death brings. I wish you a most peaceful time that is possible, to come. I hope that if you do wish to go into a hospice or go back home, this happens. If you start hurting more, ask for medication as soon as you feel the first twinge - so you dont have to wait too long for the medication.

Feel free to post on forum or pm me. I dont have any magic cures to offer yet I can offer you a caring ear.

Best wishes, Miss Cloud

[Smileyblue]

I'm sorry you're going through this! It must be totally mind-blowing!

I had a very close friend who knew his time was coming real soon, and I loved his attitude! He lived by "If you worry, you die.. And if you don't worry, you still die.. So why worry?". He passed on 31st December 2010..

My point is; once you have not just accepted your fate, but come to terms with what this really means for you, as painful as this may be, you will enjoy a happier, lighter life..

My thoughts are with you in these trying times..

[pinkcloud]

Halfman I forgot to mention.

The brain and spine foundation - a big charity, they have a helpline run by fantastic, caring neurology nurses. Whereas I and us ca give you our own pesonal experiences, these nurses can give you the proper emotional and medical information advice, The number is on their website and they also have a facebook page.


Also try and contact an indepenant advocacy worker - they are charity run and cost no money, they tie up any loose ends thats there, if you dont already you may be able to claim a special aspect of dla. Contact DIAL or citizn advice for further advice.

[Tetracyclone]

Halfman,

We will all be with you... soon enough. And I will hold you in my thoughts.

[jayleon]

I'm having it done (cordectomy)monday 11/7/2011 for my horrific pain. It has taken me 20 years to find a doctor that would do it. His name is dr. Boulis at Emory University Hospital in Atlanta. This is my last effort to end my suffering, I pray it works cause if I were a dog or a cat, they would have put me to sleep ten years ago...I will let you know how it comes out. here are a few links I found:

http://www.ncbi.nlm....pubmed/20061079
http://www.ncbi.nlm....pubmed/21080006

jay

[Trinity]

jayleon, on 06 November 2011 - 01:15 AM, said:

I'm having it done (cordectomy)monday 11/7/2011 for my horrific pain. It has taken me 20 years to find a doctor that would do it. His name is dr. Boulis at Emory University Hospital in Atlanta. This is my last effort to end my suffering, I pray it works cause if I were a dog or a cat, they would have put me to sleep ten years ago...I will let you know how it comes out. here are a few links I found:

http://www.ncbi.nlm....pubmed/20061079
http://www.ncbi.nlm....pubmed/21080006

jay

Good luck! Please please report back, I would be very interested to hear how it goes, fingers crossed you finally get relief