L5-S1 (DDD) TBI Clinical Trial What to do?

[tooyoungforthis]

Hello everyone!
This is my first post on any type of public forum. I am 27 years old, and feel that I am too young for all that is going on with my back. As much as I say that, I realize that I am indeed not too young for this. Over the past 4 1/2 years I have been having pain in my back, starting in my neck, then moving lower, and now it has rested in my lower back.

I now have spasms in my S1 nerve root with S1 nerve root damage and deviation. My spasms lunge me forward and are very painful. They shift from my left leg to my right leg. It is always a surprise.
I have seen a chiropractor, 2 spine surgeons, rehabilitation, and a neurologist. I have had aprox. 6 MRI's, multiple CT's, EMG, 3 facet steroid injections, and recently a discogram. The discogram gave the doctor an answer that I have been searching for after so long!

I was diagnosed with L5-S1 DDD. 8/10 VAS. Finally they have found what is causing my spasms, or so they think..

I have been offered to do a clinical trial with Texas Back Institute (TBI). It consists of the new Freedom Lumbar disc, and a control disc. (Which I am trying to figure out which disc it actually is) The control disc is a ball and socket type, which is FDA approved. My neurologist says that I am indeed too young for the fusion surgery due to the problems it will cause as I age, and the future stress on the other discs. I have a pretty small window to decide what to do, and am trying to gather information as fast as I can!

In reading many of the threads, but having many more to go, I am concerned that my leg pain will increase. I am of childbearing age, and the entire purpose of getting a disc to stop the pain is so that I can eventually get pregnant and be fit to carry the load.

I was very excited to find this site, and I want to thank everyone for sharing their stories. I am so thankful.

tooyoungforthis

_________________________
Chiropractics, Surgeons, Neurologists
MRI's, Facet injections, CT's, EMG, Discogram
L5-S1 DDD
S1 nerve root damage

[Deborah]

Wow, you're kind of a difficult case to decipher. The moving down the spine concept of the start of the pain is what bothers me the most, I think, or at least initially it did. That doesn't sound like a lumbar disk pain generator (to me).

What were the results of the discogram you had done? That might be the most telling. There are so many things that can cause and exacerbate back pain that I'd take it a little slow before committing to a surgery (although I am a huge proponent of ADR surgery in general, but maybe not so much so at the L5/S1 level).

In any case, good luck with your journey to find relief.

[tooyoungforthis]

Thanks Deborah,

I know it is very frustrating to me as well due to the fact that they could not figure out what was wrong with me all this time. I continued to get "you are too young for this test, or you are too young to try that." It took me pushing really hard to get done what I had to get done to figure it all out. I am an animal ER nurse, and it does not take us that long to figure out what is wrong, and they cannot speak!

Like I said, they found L5-S1 DDD VAS 8/10 in my discogram. The two discs above it I had told them that I just had pressure, but when it came to that disc I think my pain came out as "holy freakin sh**balls!" then the pain meds came and all was well again. (of course then there is the part of pulling all the needles at the same time..)

In my EMG they found S1 nerve root damage and deviation. My spasms are what bother me the most, due to the extreme pain.

I did sign up for the trial. I feel like I am at the end of my rope. I can't live with the pain any longer. Well living for me at this point is down on the couch for 3-4 days just so I can go to work on the weekends. I am open, and looking at some other possibilities, but most of the other options are still in trial modes.

I hope you continue to heal, and have great success! Thanks for the comments and concerns!

[kimmers]

So Beth or too youngforthis,


I get what you are talking about. I had ADR at L4/5 for DDD and then less than six months after that surgery, unfortunately came up with DDD at L5/S1.

I am waiting to have ADR at L5/S1 or if all else fails, fusion at that level.
I am a people nurse. Or was, haven't worked for more than 2 years.
The spasms that knock you down, are they like sciatica or different?

In my case, I have some severe sciatica (with numbness and tingling), which is like knife-like pains in both legs (sometimes going to the feet) and I have base constant pain, like a deep ache and strong burning pains on the right and left of my lower back and then I am getting what I got before, which is sudden "take your breath away pains" that come out of the blue and almost knock me down.

Sound familiar?

It does sound like you have thought things out s much as possible. A TRial can be a good thing.

pm me if you want to talk to me.

[tooyoungforthis]

Hey Kimmers and all,
Thank you for your reply! I am sorry to hear that so shortly after your surgery, they found something else! Did they see any bulging or anything with the MRI's before, that to show you would have trouble with this disc too?

About the sciatica.. it is really hard to explain in words, esp. because sciatica is really a symptom which can come out many different ways. I do not think that i have any tingling or numbness. (the last week i have been having numbness feeling in my right front thigh) But mine I describe as when the "lighting strikes" occur, it is kind of like someone stabbed me in my left or right butt cheeks, twists the knife, then pull the knife down my leg without taking it out. All at lightning speed. hehe i hope that make sense. I have the constant ache on both sides of my low back, and sometimes strong pain in my butt cheeks with or with out spasm. My lower back always feels like a bruise to the touch.

Thank you for the encouragement for the adr. It has been so long going in and out of doctors, telling me nothing was wrong, or writing scripts that it was a shock when they actually found out what was wrong. I went from being frustrated about having nothing, to worried about what to do. But at least I had options!! The trial definitely takes pressure off, since it is covered. I am so sorry about all the insurance stuff you have had to deal with.

<-- kind of jealous that a smiley can do this, and I can't!

[Amapola]

Originally Posted by tooyoungforthis

But mine I describe as when the "lighting strikes" occur, it is kind of like someone stabbed me in my left or right butt cheeks, twists the knife, then pull the knife down my leg without taking it out. All at lightning speed. hehe i hope that make sense. I have the constant ache on both sides of my low back, and sometimes strong pain in my butt cheeks with or with out spasm. My lower back always feels like a bruise to the touch.

Beth,
That describes my pre-op pain pretty well, only my butt cheek and leg pain was only on my right side. Going into surgery, my doctor was not sure if he would be able to get all the disc material out from the anterior incision and said if he couldn't, he would have to do a discectomy from the posterior as well. Luckily he was able to get it all from the anterior and I woke up sciatica free.

[Harrison]

Beth,

In my case, my "shock" was probably caused by the instability at my L5-S1 joint as it was so diseased & degenerated...totally pancaked. I think the movements from big steps caused too much friction & irritation in that area that the inflamed nerves screamed!

Any way, that was in 2004 and those days are gone. I am glad that it was only at one level and the discectomy and ADR resolved the issue. I am also glad that I had a good surgeon, right indications and a little luck! I wish you the same!

In the meantime, have you seen the new Q & A in the Cutting Edge forum? You might find some of the information on testing interesting.

[tooyoungforthis]

Thank you so very much for your replies!
Amapola: When I read your last post about your sciatic pain, it almost made me cry. I am not sure if it was the wine I was having in the morning after working an overnight, but I am sure that it was the relief that I am not alone or crazy! I have been told nothing is wrong for so long that I think it began to get to me. I am however, not expecting the same exact outcome. I know everyone is different. When I spasm at work everything and everyone stops, usually with arms out to catch me or something... eyes wide and people asking if I am okay. I laugh it off, silently scream, and move on.

Thank you for sharing with me, it means a lot.

Harrison: Thank you for the direction to the Q & A. I have been on this site for at least 4-6 hours per day since I found it, and am soaking up as much as I can. I am really interested in the neurography. Has anyone had this and it be successful? I tried to search for it on the forum, but have been unsuccessful so far. I am asking due to the fact that I am signed up for another ESI for tomorrow, and thinking now maybe to prolong it..

This site has helped me gain so much knowledge in a short time, and I have much more to swim through. When I started I had a hard time due to the fact that I did not seem to have the severity of others, or not taking as many medications as other people have to. However, the feedback I have received has been a positive reinforcement that I have needed!
I have tried so many medications that just do not work. I have signed up for the trial, but the phrase "back pain worse than leg pain" stays in the back of my mind all the time and haunts me. This is said so many times over when it comes for the adr surgeries, and that is not all the time true with me. I had the "easy discogram" and I think it actually provided me some relief for a couple days... I am not sure if that was because the gel bumped up my disc space, or the fact that I laid on my back for 2 days before this. Isn't that so strange?! So many ups and downs, and no two days are the same!

Ok sorry for the rant. Only 4 hours of sleep in the past 37 hours. I will keep my future posts to the point.

[Amapola]

Beth,
I just read in your last post that your leg pain is much worse than your back pain. This was not the case with me. My back pain was probably 80% of the total pain. I think you are wise to do more investigating before you jump into ADR. So your MRI never showed any herniation of the disc? That's what your symptoms sound like. The herniated disc material presses on the nerve and causes the sciatica -- at least that was the case for me. Then of course when the disc material was removed off the nerve, the sciatica was gone.

[tooyoungforthis]

Greetings Ama and all,

No I do not have a complete herniation of my disc. My disco results came back as "Contrast dissected into multiple, small annular defects." All the dye remained inside the disc, but came really close to the edge of the annulus fibrosus.

The thing is, they know my disc is a "pain generater," but have never connected it to my nerve/spasm pain. I am considering neurography or a movement fluroscopy or some other test I have not found yet to see if I can get the two connected some how.

I just got another ESI yesterday. This was the first time they used "sedation" on me. Due to money and restrictions I did not know about before I could not have it. I am almost pain free today!!!! WOAH! I feel like a new woman! All the other times I had to lay on my couch, and it had felt like a grown man beat the small of my back with a baseball bat! I really think the pain medication.. they used Fentanyl and Versed really helped. I didn't go under or anything, but I think it totally helped me relax!

I have got to go! I have so much to do! I think you forget how much pain you really are in, until they take it away!