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

[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!

[Poncho]

Hey Blair,

Thanks for including me - I was beginning to feel old LOL

I have not mastered the art on this website yet to look at both screens while replying but I will try to remember what you have written.

I really liked Dr. Bertagnoli. He seems honest, caring and was pretty realistic regarding patient outcomes. Most importantly good at diagnostics and surgically.

How I injured my back.....It is a long story, but I will try to give you the "Cliff Notes" version because I know that you are cramming for your law finals.

Okay, I am a nurse by profession and ended up injuring my back the first time around working as a nurse and then it finally went out at home trying to bend over to pick up a bottle of ibuprofen (ironically). Herniated L5-S1. Had a micro-d, recovered and 6 weeks later back to work. Almost a "textbook" case. UNTIL

18 months later - In the interim of the 1st injury and this second injury, I was training to be a flight nurse. Taking the worst of the worst trauma cases that came to the ER. One night, I had a gun shot victim trying to "crash" on me/us and he needed lifted from the ER gurney to the CT table and back. There was little help and I only had one tech with me with a surgeon screaming obsenities and every monitor known to man going off. After lifting this patient that was about 180 - 190 lbs (I weigh 130 lbs) - My back started hurting and then the pain progressed down the left leg. Eventually diagnosed with herniation at L4-5.

Thus, I was a work comp patient and went through work comp hell. They are the ones that told me that I would be like this the rest of my life and that may never have children - yada, yada, yada.... Career was shot in the "arse" at the time, failed every least invasive measure you can think of. So, much for being a flight nurse.

After many procedures (mostly non-surgical, except for an endo procedure in the L4-L5 region), obtained multiple opinions, lots of research, lots of pain medications - I eventually decided I could no longer wait to get this procedure done in the US. (I kept getting bumped in the open clinical trials).

Eventually, landed in Vienna, Austria and had a two level ADR performed. Not a cakewalk procedure to go through - but it did significantly improve my life.

You are certainly an inspiration to many of us here to continue with school and live in chronic pain. I certainly hope you are able to do this or that Erin is able to do that to some of those docs that are naysayers.....

Anyways, I had the surgery in May 2004 with I consider my second birthday. I am not on any pain medications except tylenol/motrin. Back in school for an MBA and hope to graduate in 6 months. (I hope) - Currently, I work at a small rural community hospital in the ER and don't have to do as much lifting. You are right about the weather - it stinks in Ohio with the changes.

You and Erin certainly are an inspiration to those of us that live in chronic pain every day and somehow getting through. I wish you nothing but the best. Good luck with finals this week!!!

Wishing you pain free enough time to get through it atleast.

Sincerely,
Poncho

PS - At this time of night, I hope that I am making some sense

PPSS - What year of law school are you in? Are you havinig an invigoring read related to contracts? constitutional law? case law? (I can't think of the rest) - but good luck.

[Blairsara]

Hey Poncho
I’m sorry I wasn’t able to respond until now but I kind of put my life on hold the past few weeks and I am now catching up.

Glad to make you feel like you’re included. I’m glad to hear about Dr. B, I still have to fill out that form and send it back to them. Time kind of stopped once finals came around, and I am now getting everything back in order and organized.

Thanks for sharing about your story on how you injured your back, it’s never a short story huh? Mine definitely isn’t. I’m sorry that you had to deal with work comp people, I’ve heard that it isn’t a very pleasant experience, and from listening to your experience it definitely wasn’t… so I’m sorry.
How long did you spend in Europe after having the two level ADR? Was that hard for you having such an invasive procedure and then having to fly back to the states? I am so glad to hear that it has improved your quality of life. I definitely believe that is what we all are looking for – a better quality of life from what we are dealing with now; something, anything, that will make us feel just a tad bit better. And I am so happy to hear that you found that answer.

Thank you for saying that I am an inspiration, those words definitely make me feel that how I am approaching this whole situation is the right way and really the only way. This is the first time that I haven’t had anything on my mind in a while and only my back to think about. Let’s just say that last week wasn’t that great of a week but now I’m over it. I randomly go through these spurts where I’m in a “funk” for a week and then I pull myself out. I think that with this one, after having the rhizo and then not really being able to fully recover b/c I had to study for my finals, and then sitting through two 6 hour exams I was just worn out and exhausted. I think that really what gets me through going to law school and being in constant pain is that I am always busy and really don’t have time to concentrate on the pain (or at least I don’t let myself concentrate on it).

Congrats on being back in school and that you’re soon to graduate! That’s awesome. I hope you had a wonderful holiday whatever you celebrate – Hanukah, Christmas, Kwansa – and that you have a wonderful new year!!

Also, I just finished my first semester of my first year at law school and you got it about the contracts!!!

Blair

[Blairsara]

Well I went back to Dr. Regan this afternoon to find out the results of my CT scan. Unfortionately I am starting to form arthritus on my left side, and the films show that my left side is worse than my right side. I'm going in for another facet block sometime next week for my right side and am going to take the same course of action that I had done with my left side to alleviate the pain. Lets just hope that it doesnt take 2 yrs.
I'm a little discouraged that the Charite started the formation of arthritus when it wasnt even there, but I had this frustration before. And it is a definite that sometime in the future I am going to have to have another surgery.

[annapurna]

Blair,

You're such an inspiration to all of us with your determination to finish your law degree despite all of your spine issues!

Sorry to hear about the CT-scan news of arthritis starting in your facets. I'd be furious if it were me. At the same time, my friend Mark Mintzer always reminds me that I don't know whether I would have been worse if I have just gotten a surgical fusion or done nothing at my L5-S1 level. I'll pass that advice on to you: don't regret getting your ADR. It's done now, and for all you know you might have been worse without it. Better to focus your energy on your future -especially at your young age.

As far as getting another surgery goes, don't worry. I'm only 39 and have already had two ADR surgeries so far, four knee surgeries, four toe surgeries, and will probably need another couple knee surgeries in the near future. Not a single one of them has been worse than living with the problem that necessitated it. Look forward to getting the correct surgery for your facets at the correct time and feeling better when you do. Of course, continue to pursue rhizo and other pain management now so you can feel as good as possible while you wait.

Continue to rely on Dr. Regan for help - he's working at the forefront of ADR and facet technology and is a superb surgeon. I've seen him for my facet pain too and he's given me great advice.

Best of luck and please keep posting!

Laura

[Michelle]

So sorry to hear you're still having problems! It's frustrating, huh? I hope they're able to calm your facets down. I'm dealing with mine right now too, though mine were arthritic before my ADR. Can they do both sides at the same time? Mine did. Anyway, I hope it gets better soon for you! Hang in there!