9 replies to this topic

[piero]

Hello there,
I'm new on this site, here's my story:
It toke me about a year to recover after my accident in june 2005. I am paraplegic (T3-T5) and soffer the same pains that most of the people do on this site (knife stabbing like feeling, burning, sense of constriction...). I'm taking "Lyrica", 150mg.3xday and "Oxycontin", 40mg.3xday. At night I'm taking "Rivotril", 20 drops, that helps me sleeping, that seems to be the only moment I don't feel the pain!
I feel lucky to have found this site, I had no idea of how many people are going through the same struggle every single day and as mean as it can sound, It makes me feel better, actually, it makes me feel not alone, there are many who can understand what I mean when I try to describe it!
I went through all sorts of medical suggestions, I have an intrathecal pump implanted through which they tried in 2007 when it first came out here "Ziconotide", with no benefits at all! than, "Morphine" which also gave me no relieve. Now the pump is set on the lowest level since is filled with phisiologic water waiting for an eventual new drug similar to "Lyrica" that can be used via intrathecal to come out. I also had the electro stimulater wires implanted in 2006, which besides it didn't do me any good, it also got infected and left me with a 3 inches wide hole in my back that had to heal by "second intention" (by its self), it toke a year. This past april I had the "metal work" removed because one of the screws was about to pinch the Aorta vene and replaced with a longer one (T2-T8), hoping it would have helped to reduce the pain too. The one I had before was too short (T3-T5). I went through surgery two more times after that because the stitches kept on breaking in the area where the infection had left the hole...
I am now thinking about the "DREZ" but it seems like so far no one has had any benefits with that. Unless, anybody out there did it and can tell me about.
Thank you
Piero

[sublux]

piero, on 18 October 2010 - 07:33 PM, said:

I'm new on this site, here's my story:
...
I feel lucky to have found this site, I had no idea of how many people are going through the same struggle every single day and as mean as it can sound, It makes me feel better, actually, it makes me feel not alone, there are many who can understand what I mean when I try to describe it!

Unfortunately, I don't have any experience or suggestions to offer regarding the pain, but welcome to the site! There's nothing wrong with feeling better knowing that other people can truly understand what you're going through. That's the beauty of places like this!

[Smileyblue]

Hi and welcome.. I too go through the everyday pain that has gone with the injury for me.. We are still working on trying to find medication that works for me, before we go the surgery route.. I'm sure someone will be able to help you on here, or even if you use the "search" feature to find previous threads on this topic.. Good luck.. ;-)

[edlee]

I'm still looking, too,, Piero. Maybe tommorrow.

But welcome,,, I know what you mean,,, it isn't that you or I are glad others are hurting,, it' just good to know there are others who understand what I mean,,,, about so many issues.
ed

[araitn]

piero, on 18 October 2010 - 07:33 PM, said:

I am now thinking about the "DREZ" but it seems like so far no one has had any benefits with that. Unless, anybody out there did it and can tell me about.
Thank you
Piero

I find the DREZ procedure an interesting option. Here is some information I have found in my research.

The resultls of a 2008 clinical study by the Department of Neurosurgery, Ankara University School of Medicine, Ankara, Turkey can be found here. The DREZ procedure was performed on 44 SCI patients with a success rate of 77%.

In a 2006 article from New Mobility magazine, Dr. Falci from the Craig Hospital stated:
"The pre-op testing tells us where to look," Falci explains. "Once the cord is exposed in surgery, we can hook up electrodes, measure responses, record activity and analyze for painful and non-painful responses. The difference between pain and normal signals is quite clear, and we use that information to direct our surgery. We can now knock out the pain 85 percent of the time."

At this point, a 77% to 85% success rate sounds like pretty good odds to me. The downfall with this procedure is that there is a possibility that some loss of motor function could happen. I've had some return of motor function in my uppper legs but, I'm at the point that I would give that up to get rid of this awful, everday pain. I'm just now beginning to seriously consider this procedure and I haven't made any contact with Dr. Falci at this point.

Good luck in whatever you decide to do.

[tyvin]

That was great information araitn; I had no idea what "DREZ" was and now feel a little more informed. Welcome piero and there is nothing wrong with commiserating with your fellow peers. Misery loves company; birds of a feather and so on and so forth. To talk to others that are subject to the same plight is good for the soul; reminds us that we are in fact not crazy or have not yet fallen off onto some wizard's paperweight.

[piero]

Thank you all for your support!
Araitn, the percentage isn't too bad after all, don't you think?... I think I'm going to cosider that seriously and go for it eventually at the beginning of the new year. So far I did everything was proposed to me hoping, once done it, to wake out of the anestesia painfree! Unfortunately that hasn't happened "yet". Maybe this time I'll be lucky :-)
Meanwhile I hope someone who has done it already will show up with some good news!
Thank you

[Adil]

I had the DREZ in 1993 at Yale University by Alain C. J. de Lotbinière, M.D.. It was the best thing I ever did to manage my spasms and pain. I was spasm free and pain free for 10 years. The spasms and pain started to increase around 2003, although not as strong as before the DREZ. Before the DREZ my legs would straighten out violently and lock up. I have never gotten that type of spasm again. The pain is also far less than before.

Even though the spasms and pain have returned, they are far less. Almost 20 years later, I am still enjoying the benefits of the DREZ.

Another thing the DREZ did for me was that it enabled me to get off the meds (I was taking way too many). I was able to get off all the meds. To this day I take no meds, except the occassional valium on a plane or ambien to fall asleep.

In 2009, I opted for a baclofen pump because Dr Lotbinière recommended giving it a try in case the spasms returned. But the baclofen pump also effects the brain and bladder, something that the DREZ did not do. I am considering removing the pump and having another DREZ.

The DREZ reduced my lower back and sacral pain from an intolerable level (sharp knife) to a manageable level (dull pressure) but did nothting for the pins and needles sensation in my feet. But the lower back and scral pain was much worse and the foot pain was not so bad. Overall, I was very happy with it.

Dr. de Lotbinière did tell me that I may loose some motor function. I don't notice any difference.

[piero]

Adil, on 03 January 2011 - 05:19 AM, said:

I had the DREZ in 1993 at Yale University by Alain C. J. de Lotbinière, M.D.. It was the best thing I ever did to manage my spasms and pain. I was spasm free and pain free for 10 years. The spasms and pain started to increase around 2003, although not as strong as before the DREZ. Before the DREZ my legs would straighten out violently and lock up. I have never gotten that type of spasm again. The pain is also far less than before.

Even though the spasms and pain have returned, they are far less. Almost 20 years later, I am still enjoying the benefits of the DREZ.

Another thing the DREZ did for me was that it enabled me to get off the meds (I was taking way too many). I was able to get off all the meds. To this day I take no meds, except the occassional valium on a plane or ambien to fall asleep.

In 2009, I opted for a baclofen pump because Dr Lotbinière recommended giving it a try in case the spasms returned. But the baclofen pump also effects the brain and bladder, something that the DREZ did not do. I am considering removing the pump and having another DREZ.

The DREZ reduced my lower back and sacral pain from an intolerable level (sharp knife) to a manageable level (dull pressure) but did nothting for the pins and needles sensation in my feet. But the lower back and scral pain was much worse and the foot pain was not so bad. Overall, I was very happy with it.

Dr. de Lotbinière did tell me that I may loose some motor function. I don't notice any difference.

[mellowgator]

this sounds really good. i'll have to check it out.


mellowgator