[kzlrogue]

Hi to all of you. I am hoping I have found the right place.....for both information and emotional support.

For the past 5 years, I have been living with chronic pain that exists throughout my entire body. After many trips to the hospital and being misdiagnosed numerous times, the doctors finally discovered that I have a split in my spinal cord and a tethered cord that both are located in my lower back. They say this is what caused all my lower back and leg pain. It gets so bad, I have problems getting out of a chair and even walking. When it gets REALLY bad, all I do is cry because of the pain which is not like me. I was brought up where you don't show emotion very often...it can be a sign of weakness. That mindset served me well when I was in the military, but I certainly found my breaking point with all of this. The pain meds that I was given didn't seem to really do anything either. It took a slight edge off but that was about it. The doctors also say I have cervical stenosis in my neck which causes all my migraines and arm pain. Unfortunately, I can only choose to have the stimulator work on either my arms or legs. I have decided on my legs since I feel that I need them more and that is where I have had the pain the longest.

The bad news is the Doctors say there isn't any surgery that will "fix" my problems since I am too young. (I am 37.) However, I am scheduled for the spinal cord stimulator surgery the beginning part of February which I have mixed feelings about. I feel that this is a "band-aid" but at this point I will do anything to alleviate the pain. I was hoping someone who has had the surgery could respond to my post.

The research I have found has resulted in positive outcomes but the doctors are going to also cut bone out to make room to insert a paddle. They are doing this to secure the leads in place so I can lead a more active lifestyle. I use to be every active before the pain started and would like to try and get some of my life back. My main goal is to be able to play more with my 6 year old son! And not be so cranky!! I use to be happy-go-lucky but all this pain has put a bit of a damper on my attitude! I find it a lot harder to stay happy and positive. I didn't have to work as hard at it before!!

I really appreciate any feedback anyone might have!!

Thanks!

[NurseNancy]

hello and welcome.
i don't have any experience with the surgery but i know about daily pain.
it saps your energy and puts a damper over everything.

you might consider a 2nd opinion unless you've already had one.
good luck on this procedure and please let us know how you're doing.

i'm sending best well wishes for a speedy recovery and for you to get some relief from your pain.

[Hockey]

Hi and welcome to NT!

I'm so sorry to read about someone as young as yourself suffering so terribly. I don't know anything about Spinal Cord Stimulators (SCS), but I do recall that there was a spirited discussion on that very subject here in December. In case you'd like to look it over, the link is:http://neurotalk.psychcentral.com/sh...ferrerid=18324

Even though some of us who don't understand your specific condition, few of us are strangers to pain. We're all here when you need an understanding ear.

Again, welcome to NT and thank you for your service.

Cheers

[kzlrogue]

Thanks for the responses and info! This site along with everyone's posts have been such a great help already!!

[Wilbyfree]

Hello, I am new to this forum as well. I am sorry for the pain that you are experiencing, I have widespread pain as well, but have Causalgia in both lower extremities. I did interview last year for the spinal cord stimulator, I did some research, if your problem is in your back it does show some promise. What they explained to me was that it shuts off the pain literally by using electronic impulses. If you have ever used the TENS unit, it does about the same thing except it focuses on the area that it is applied. I chose not to have it due to the fact that I have major trauma in both of my feet and it did not treat that pain, which meant that I would still have to take pain meds. There is a trial session, I do know that. I would recommend the trial, it is only for 3 to 5 days and there is nothing permanent it will just give you an idea.

Weighing out the pros and cons on something you know absolutely nothing about is stressful, I have learned to meditate and ask my body, mind and spirit to move me in the right direction. It is all trial and error, but it is your body and your choice. God Bless

[kzlrogue]

Originally Posted by Wilbyfree

Hello, I am new to this forum as well. I am sorry for the pain that you are experiencing, I have widespread pain as well, but have Causalgia in both lower extremities. I did interview last year for the spinal cord stimulator, I did some research, if your problem is in your back it does show some promise. What they explained to me was that it shuts off the pain literally by using electronic impulses. If you have ever used the TENS unit, it does about the same thing except it focuses on the area that it is applied. I chose not to have it due to the fact that I have major trauma in both of my feet and it did not treat that pain, which meant that I would still have to take pain meds. There is a trial session, I do know that. I would recommend the trial, it is only for 3 to 5 days and there is nothing permanent it will just give you an idea.

Weighing out the pros and cons on something you know absolutely nothing about is stressful, I have learned to meditate and ask my body, mind and spirit to move me in the right direction. It is all trial and error, but it is your body and your choice. God Bless

Hi Wilbyfree -

The problem originates in the lower back that radiates down both legs. I have used the tens unit. I had pretty good results (it took the edge off enough were I could at least function) as long as it was on. The problem was I couldn't have it on 24/7 and as soon as I turned it off, the pain came rushing back and at times the pain seemed even worse after I had used it. It was like my body was saying....."I hoped you liked that little bit of relief because you will pay for it now!!!" I also did the trial and that seemed to help as well. It radiated that "tingling" feeling from my ribs all the way down to the bottoms of my feet. However, it was only in a few days so I wasn't sure at the time how much it was helping because I had a lot of pain in the incision area. However as soon as it came out, I could totally tell that it worked because a lot more pain came rushing back again. I know that this is not a "cure" but if I can get some type of relief, I will be a happy camper!!! As my son and husband will be, too!!!

Thanks for your thoughts!

[Wilbyfree]

Originally Posted by kzlrogue

Hi Wilbyfree -

The problem originates in the lower back that radiates down both legs. I have used the tens unit. I had pretty good results (it took the edge off enough were I could at least function) as long as it was on. The problem was I couldn't have it on 24/7 and as soon as I turned it off, the pain came rushing back and at times the pain seemed even worse after I had used it. It was like my body was saying....."I hoped you liked that little bit of relief because you will pay for it now!!!" I also did the trial and that seemed to help as well. It radiated that "tingling" feeling from my ribs all the way down to the bottoms of my feet. However, it was only in a few days so I wasn't sure at the time how much it was helping because I had a lot of pain in the incision area. However as soon as it came out, I could totally tell that it worked because a lot more pain came rushing back again. I know that this is not a "cure" but if I can get some type of relief, I will be a happy camper!!! As my son and husband will be, too!!!

Thanks for your thoughts!

I totally hear you on the relief, and lets face it when we are in such desperate pain we will try anything. It sounds as though you did have a good response to the trial, that is promising. Trying to managa this pain and family has been one of my greatest challenges. I hide, literally on severe days, just so I don't snap at them. I remind myself that they could not possibly understand. It is all just overwhelming at times. God Bless you and your family, I wish you all the best.