2 replies to this topic

[TimRS]

Hey folks...
Got a new one for you. I have just been to see my consultant for my annual check, and we discussed the possibility of a cordectomy in the future.
The reasons that we are discussing this option are two-fold.

1. My L1 vertebra wasn't properly re-aligned at the time of my accident, and as a result, the cordal canal is restricted, causing my spinal cord to be compressed, and increasing the risk of developing a syrinx (spinal cyst) in the future.

2. I suffer with a lot of neurological pain which may be caused in part by the stretching of my spinal cord when I bend.

I know there is no guarantee that my pain will be improved, but just the risk of developing a spinal cyst makes me very nervous, and as a complete injury, my cord is 95% cut anyway and I am not holding my breath and waiting for the right stem cell to come along and fix it, so I am not in principle against having it cut, it's just, well, more surgery without a straightforward outcome/objective.

Anyone had experience of this?

Cheers,

Tim

[kewlcatkez]

TimRS, on Mar 3 2008, 10:35 PM, said:

Hey folks...
Got a new one for you. I have just been to see my consultant for my annual check, and we discussed the possibility of a cordectomy in the future.
The reasons that we are discussing this option are two-fold.

1. My L1 vertebra wasn't properly re-aligned at the time of my accident, and as a result, the cordal canal is restricted, causing my spinal cord to be compressed, and increasing the risk of developing a syrinx (spinal cyst) in the future.

2. I suffer with a lot of neurological pain which may be caused in part by the stretching of my spinal cord when I bend.

I know there is no guarantee that my pain will be improved, but just the risk of developing a spinal cyst makes me very nervous, and as a complete injury, my cord is 95% cut anyway and I am not holding my breath and waiting for the right stem cell to come along and fix it, so I am not in principle against having it cut, it's just, well, more surgery without a straightforward outcome/objective.

Anyone had experience of this?

Cheers,

Tim

Hi Tim,

I am not sure if this poster is still on the boards, but if you follow the link: http://www.apparelyz...h...ost&p=44085 it is to the post of a lady called Debbie Teague, level T12 who said:

Quote

I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.

Other than that I have no direct info for you personally. I am sure others may. What I will say though is that I can relate to the wishing to have the procedure, its something I consider seriously and go over in my head ( pros and cons as I see it) daily. Having baby with no pain relief didn;t come close in some ways...as this has no ending... A bit about me, if I may,

I am a Mum of 2 kiddies (5 and under) and am married to some Bloke! I trained and worked as an RN: I now am in the paralysed 'club' (chair user for around about 3 years) and have severe dislocating EDS ( means I dislocated multiple joints, multiple times daily - which although were present before, were not every day..now they are as a result of hormonal influence, an accident and the fact that it usually progresses due to the trauma of the proceeding dislocations etc etc.- has gotten worse over last few years). I also have the other stuff which goes with all of this ( pain, POTS, Autonomic dysfunction -like AD etc). I also have a lot of pain, Pain from the many daily dislocations, pain which is constant burning and through to the core and then pain which is in the background whilst other pain of a different type still screams in the foreground etc......Maybe, all "the crap wrong" with me may contribute to that "neuro" nerve pain, although they are all different types of pain. Who knows, maybe the collective bunch leads to overload neurologically? - a kind of over sensitization, which the body needs 'resetting' from).

With regards to the Spinal cord severance, you say that your cord is 95% severed due to being Complete, did the drs see that on the MRI? I ask as many say that there is complete severance already when what they mean is 'crushing'. I guess it doesn't matter too much but wondered as it seems that those with crush/contusions have similar patterns of pain. Whilst we are talking of cord severance, dud the drs do/try any spinal blocks? ( I wrote "boloks" then lol instead of 'blocks' - indicative of my writing? LOL) I believe that there are concerns in some medical corners that severance can lead to issues of Hip joint and pelvic issues and a higher risk of Osteoporosis due to the lack of tone etc - although I would think it would be the same as a cord severance through injury, anyway...? I will mooch around and see what I come up with, and get back to you if I do...

Not sure what other methods you have tried before going down this route ( I would think a fair few), but also that drs are reluctant to go for cord severance unless you have tried other avenues. I take it that you have looked into drugs which are Primarily licensed for one use, yet can have a side effect of treating another? anti convulsant meds ( ie Neurontin®, Lyrica®, Gabapentin® etc) Antidepressants, alpha-2-adrenergic agonists? (tizanidine (Zanaflex®) and clonidine (Catapres®). Dextromethorphan? which is basically a cough suppressant when used- under a drs advice, in much higher quantities is also useful for some types of Neuro pain.

I have tried Gabapentin® and Topamax® and am about to take Lyrica® (along with my opiates ) and may even try Zacin® (made out of the stuff Chillis are made out of and is meant to kill like crazy, but block pain receptors) we are just not sure if it will be that useful for Neuropathic pain, I tried extra hot Tiger balm and didn't help.... neither does aversion therapies and Acupuncture (in my case) nor deep and targeted thinking etc.. although some things have distracted me momentarily, nothing has allowed me to escape...I try and keep my mind as busy as I can..

I do wish you well and hope that whatever you decide, you manage to find a solution to the pain.


Take care,

K

[TimRS]

K,
Yes, the 95% is clear on the MRI, and yes, I have tried pregabalin, before going back to gabapentin, as it doesn't space me out as much, and I am also on Amatrypteline, as well as having tried an I.V. iinfusion of lignocaine. BAsically, I'm a patient at the pain management clinic at the Neurological hospital at Queen's square, so we're working our way through the list...

I also find occupying myself the best way of coping. I have a 2 and a half year old daughter who keeps me busy, as well as having written a book etc.

On some occasions, I even find computer games a good distraction, although I'm sure they aren't so good for my I.Q. java script:emoticon('', 'smid_2')

Thanks very much for your suggestions. I will check out the other posting that you referred to.

Good luck with your quest. By the way, is the chilli stuff for eating or topical application? I just lost myself in a dream of curries on prescription!


Tim