2 1/2 years post op - Charite ADR L5/S1

[Blairsara]

I was 22 years old when I had the surgery. About 9 months after the surgery I started having new pain which was due to the surgery. I guess the Charite disc can cause the facet joints to move much farther than they are supposed to and therefore causes degeneration and significant pain. I never had facet joint problems before the surgery. Apparently, there is no way to fix this problem except for a fusion, which I refuse to do. My doctor (Dr. John Regan) is currently working on trying to find a new procedure other than a fusion to fix this problem.

I am wondering if anyone else on here who has had the surgery and happens to be a young patient has this type of pain. How are you dealing with it? For the past year and a half I have had facet blocks every 4 months. I am now going to have a rhizotomy. Has anyone had this procedure? Does it work? I know the procedure is not done to fix the problem, but merely to alleviate the pain.

I recently found out this information - that I am going to have to have another procedure in 3-4 years. That the only thing to make the pain go away is a rhizotomy since the facet blocks don't last that long. I guess I am just frustrated, and figure that since this is a forum for bad backs, I should let out my frustration on this and hope that someone who is having the same problems talk about them with me.

I was off pain killers for a long time. But now the pain has been so bad that I am back on them. Some days are great but other days are terrible. It's exhausting and because of the pain I have insomnia. For those of you out there that have insomnia problems what helps? I have tried all of the sleeping pills on the market and nothing works. I am going to various sleep doctors, but when it all comes down to it, it's the pain.

This has been a long battle, and I assume this is going to go on for a very long time. Is there anyone else out there that is in the mid 20s to late 30s that is going through the same thing? It would be nice to talk to someone who has the same problem. My family is incredibly supportive and so are my friends. But it would be nice to talk to someone who really knows what I am going through.
Thanks.

[dshobbies]

Blairsara,
I am so sorry for your pain. We enter into this world looking for a happy ending which we sometimes do not reach. I am 1 year post op, 3 level pro-disc and am dealing with leg issues and am still hoping for that happy ending. I can only imagine your frustration level. Please take care and have hope.

Dale

[Blairsara]

Dale,
I'm sorry to hear about your leg pain. You're absolutely right. I went into this thinking that I was going to be sooooo much better. I would probably say that I was a little bit naive and young thinking (is that even a phrase.. haha) since I had the surgery when I was 22.
I hope that you figure out your leg problems.

[chasswen]

blair you may want to contact pro-spine dr. b is using alot of stuff there that cannt be used yet here.
i surely hope things turn around for you soon.
chuck

[Blairsara]

Thanks Chuck, I really appreciate it. It seems like this week my back is not doing well whatsoever, which is pretty stressful because I have my finals for law school next week. Hope you're doing well.

[djscal]

Hi there,

I have the exact same problem, the same surgeon and am around the same age range as you.

I have had two rhizotomies already. Unfortunately they didn't help much, but they may help you a great deal.

Dr. Zeegers recently found a cyst on my right side facet joint. I was just in Dr. Regan's office discussing it with him the other day. Looks like I might need to have it removed. I'm hoping I can avoid a fusion...

Private message me with your contact info and we can talk more in the evening or weekend.

Dan

[ErinENj]

Blairsara: I'm a young one too. I'm 25 currently and have been in this 'experience' for 4 years to the week (I thought it was 5 and was posting everywhere saying it was 5, but my mom was sure to correct me. I always think this has been a LOT longer than that!!). I had my first surgery on Dec. 12, 2002.

I'm waiting for my surgeon to tell me that it's time for a multiple-level ADR at L4/L5 and L5/S1. Since I found this board, I got some suggestions for doctors that are already doing the multiple level surgery. I think my doc is waiting for a specific disc, so I'm not 100% sure where I stand right now.

For sleep, I use a combination of 2 meds and it works okay. The first is Rozerem, which does something to the melatonin in your brain and that is what is knocking you out. My pain doc explained it to me, but it was too complicated for me! The other one is Restoril. I don't know what that one does. I think it's similar to Ambien and those types of meds.

It's really hard facing the rest of our lives like this. I had a major "incident" (I don't know how to describe it) last March where after the length of a week, I couldn't stand up straight, walking was amazingly difficult, and sitting was nearly impossible. One night, for example, my mom and dad had to try to get me out of one of our kitchen table's chairs. My father was lifting me from behind me, and my mom was pulling me up from the front, but I couldn't stand up, even hunched over. That was the worst pain I have ever, and hope will never that kind of pain again. My parents finally got me up and immediately rushed me out to my mom's car to take me to the ER. I didn't want to, since I figured it was just a muscle issue and didn't want to waste both my and the ER's time. It's a good thing I went. I found out that I had somehow managed to herniate what was left at those two levels. After I found that out, I immediately scheduled an appointment with my surgeon to see if there was anything that we could do to get rid of this pain. Unfortunately, there isn't except for replacement. He walked into the exam room and immediately said, wow, you sure look depressed. That was a great boost to my ego! NOT! But, and here's the point, in our conversation (during which he told me that there wasn't anything they could do until the ADR), he told me that, even with the surgery, I won't ever get rid of the pain. This will be the rest of my life, without question. The procedure may lessen it some, but I will be in some level of pain for the rest of my life. I've only lived a quarter of my life and the other 3/4 will be spent the same way. And that's the most terrifying thing that anyone has ever said to me. I always held onto that hope in the back of my head that, once they do the ADR and I recover, I'll be fine. I'll have the ability to get my life back. My doc basically dashed that hope in one sentence. And it hurt.

It's hard to face the future when you know that it is going to be the same as the life we're living now. It's terrifying. There are too many days where I don't think that I can make it through tommorow, let alone another what, maybe 70 years if I'm lucky. BUT, I also consider those of us who get hit with this when we're young are better off. I know it sounds weird but just hear me out on this. I don't have kids, I don't have a mortgage to worry about, I don't have a full time job that I have to keep so that both I and my family have health insurance. I don't have even a quarter of the responsibilities as people who are older than us. (I mean absolutely no offence to anyone with this) You never know what these docs will come up with next. Who knows, maybe in 5 or 10 years they will have found the magic cure for this. And because we're so young, we are the optimal candidates for those types of things. When I started this 4 years ago, there wasn't the adr being used, and now that's an option. You never know what tommorow may bring.

I'm really lucky. My parents are understanding enough to allow me to still live at home and support me in every way, including financially. My parents pay all of my bills. But they do that so I can have a shot at a future. They do it so that I can stay in school and get my degree. They want me to have a career, not just a job. They want me to be happy, and to be happy in the future, I have to be able to finish this. I've been working on it for 7 years now, on and off with my surgeries. If I were to quit, I'd regret it for the rest of my life, and I know that I'd feel worthless. Even in the summer, when I don't have anything to do, I feel like there is no point for my life. It's hard.

I know this post is really long, and I apologize. I'm a journalist, so I tend to write, a lot! But, the bottom line here, is that I want to tell you that I'm here if you need someone to talk to about this life. I haven't had the adr yet, and I don't know what's going on with your surgery, but I'm here for you if you need me. Feel free to email me or private message me whenever you need. This next week is finals week, so I may not be able to get back to you right away, but I promise that I will get back to you. And, as hard as it is, try to hang in there!! Remember, you never know what tommorow will bring. Yes, it may be worse, but it also may be better. You never know.

[Blairsara]

Erin - just wanted to say it was good talking to you on IM. Good luck on your finals and I hope your back doesnt act up on you.

I have been trying to figure out the medical terminology for "stuck" facet joints. I'm thinking that it's subluxation/dislocation? Does anyone know? I'm seeing my doctor in the beginning of January but I would kind of like to have a complete understanding of what is going on before I go in.

Thanks.

[Poncho]

Dear Blair,

I know that you initially requested someone in their mid 20's - early 30's for support. I don't know if I would count or not. However, I was first injured when 30 and I'm now 37.

Been through the injections, micro-d, endo-scopic discectomy, and then finally ADR at 2 levels L4-5 and L5-S1 (overseas with Dr. Bertagnoli)

I have not had the Rhizo done, but I have seen where they have been a "God send" for some and others it didn't help much. It will take a bit of time to know if it works, crossing fingers that it works for you.

As you well know by now, the least invasive measure is the best (though I do understand your sense of urgency to feel better ASAP). As someone else has mentioned already, perhaps facet replacement would be an option later - but atleast it leaves you with more rather than less choices that are out there.

As for the physicians saying that one will be in pain for the rest of their life. Well, maybe - maybe not. Don't let some of the physicians with the negative commentary let you think that way. Erin - this means you too! My docs told me the same thing - I was told that I would be in the same excruciating pain the rest of my life and to learn to deal with it at the age of 31. I'm here to say that they were wrong! After having this ADR procedure done, it took some time to recover, get off the pain medications and get back to work. Am I completely pain free? Some days during the week I am and other days during the week - I get the "aches" and some sciatica. However, not near as bad as pre-surgery. I do think that the symptoms are from the facets, but I can tolerate it at this point. (keeping fingers crossed)

So - I guess what I am trying to say is keep your chin up and do what you can to stay positive. Hard to do I know, but it is important.

I wish you nothing but the best and pain free days ahead.

Sincerely,
Poncho

[Poncho]

I almost forgot to mention this, but there is a member named "bmills" on ADRSupport. He injured his back when he was like 19 or 20. Went through his undergrad and lawschool in chronic pain until he received a 3 level ADR. He is about my age, but I think it would be inspiring for you to contact him.

I haven't seen him here (yet) - but he may still be hanging out at the other site.

Hats off you you and Erin for continuing to face the vigors of school and manage this medical problem.

Take care,
Poncho

[Blairsara]

Poncho,
Of course you count . The only reason why I posted the age “requirement” was b/c I was wondering if there was someone out there who had the same problem resulting from ADR. The last time I went in to see my doctor he explained to me that he has seen more of the younger patients with this problem. But in my book you qualify as being young .

How was Dr. Bertagnoli? Someone recommended me to contact him because they are doing quite a few less invasive procedures out there than they are here (which is obvious since the Charite was only approved in 2004 and I was part of the study in Los Angeles). They responded to my email but I can’t deal with it until my finals are over. Right now I’m just trying to cram the law into my brain and not have my back interfere.

How did you originally hurt your back, if you don’t mind me asking? Did you have the Charite implant or the Pro-Disc? There are so many discs now, when I had my surgery there was only the Charite and Pro-Disc (but my spine was too small for the Pro so I had to go with the Charite).

I’m just crossing my fingers that I will wake up the morning of my exam and be in a little less pain than normal. All I can do is study hard and do my best and if my back interferes than I’ll deal with it.
Thanks for crossing your fingers! I’m crossing them myself :P

You’re right about the least invasive measure being the best and that is what I want. I guess that after being in pain for 6 years and in a constant state of pain for almost the past 3 years I would like just one day where I am pain free. I don’t know if the facet replacement is really the right thing for me. From the research that I’ve done and talking to my doctor I think I need some sort of spacer. But I also have this new problem where my right facet joint is stuck in an overextended position. Maybe you can answer this question for me – does having a stuck facet joint in an overextended position mean subluxation?

I guess the reason why I’m a little anxious to get this done and over with is because I don’t want my back to interfere with law school. And it really did this semester. I really want to transfer into the day program, but with the pain and my sleep issues due to my back there is no way because I’ll just set myself up for failure. I also want to study abroad, but I'm worried that if I go to Europe and my back turns for the worst I will be stuck in a country in excruciating pain, far away from my family, and ... ya it just wont be a good thing.

About my "team" of doctors, they haven’t really said that I will be in pain for the rest of my life – that’s just my opinion. But they have said that they don’t know whether I will be in pain for the rest of my life, but they think that I wont. I’m quite cynical, I guess that for me to think that I am going to have to deal with this for the rest of my life helps me cope with it and fight through everything. If I learn how to deal with the possibility that I could be in pain for the rest of my life than later on when I’m still in the same amount of pain I won’t be depressed and angry at the world. Thinking that I might be in pain for the rest of my life, in some weird way, helps me stay positive.

I’m so glad that your doctors were wrong and that you are pain free! Even though my surgery was definitely not a success, I am glad to hear that it has worked for people and continues to work. I would never wish what I am going through upon my worst enemy. However, everything that I have gone through has definitely made me a stronger person and I know that when life throws other major problems later on (because as we all know life is not easy and tends to suck) I will be able to handle them, find a solution, and know that I will come out on top with determination and that NOTHING will and can break me down. I was a strong person before I started having back problems, but it has helped me grow even more as a person and have a true and clear perspective on life and what matters.

How long did it take you to recover from your surgery? I’m sure that when there is a change in weather your back starts to ache huh? This season is not injury friendly. :P But I am glad to hear that you are not in as much pain as you were before your surgery. Have you had any CT scans or MRI’s to pinpoint that it is your facets that's causing your pain? I hope your symptoms don’t increase and that you can keep tolerating the pain. I’m crossing my fingers for you.

So thank you for your kind words. I do appreciate it. Every day I give myself a pep talk because I know that if I don’t stay positive than there really isn’t anything left. I promised myself a few years ago that I would not let my back control my life, and I try and do everything possible to keep that promise. But sometimes it wins and there is nothing I can do about it but just remain positive. It took me a long long time to get to the point where I am now – to understand that I have to be strong, stay positive, and never give up, and that things could be worse. So again, thank you! Also thanks for the name I’ll send him a message on ADR.

I hope you had a great weekend and talk to you soon. And I agree with you on hats off to Erin as well!