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

[CurlsGirl]

G'day there,

I am 2 years 9 months post op from a Charite at L5/S1 and am still suffering "distraction" pain, peripheral neuropathy, call it what you will.....It is nerve pain that extends from hip to foot and is in fact worse pain than that which led me to have the ADR in the first instance.

However, I suffered with facet pain some two years out of surgery which responded for a time to facet joint injections but last April my surgeon discussed with me the possible value in having a DIAM (Device for Intervertebral Assisted Motion) stabilising device inserted.

It is a butterfly shaped silicone and polyethylene device that is fitted under the facet joint and opened out to elevate the joint and stabilise it. The logical theory for me was that it should also lift the joint away from the S1 nerve and hopefully gain me some relief from the nerve pain. It did assist with the facet joint pain but the logic of the nerve relief didn't happen.

PM me if you want to know more.

Happy days

[Michelle]

I'm 27, and only 3 months out from my ADR (ProDisc). I just got an order today for a facet block. I was told I had facet arthritis years ago, and even had a successful block, but got pregnant and didn't have the Rhizo. It was a small part of the problem then, and not really worth pursuing with a newborn at home. Now I'm hoping it will remove the last of my post-op pain. I feel for you suffering so much!! I know what you mean about your hopes-I admit I really expected to wake up and not hurt at all anymore. After 8 years, like that's realistic!! But, I am better than I was, significantly, and glad I did it. I'm glad your family and friends are there for you! I don't have any advice, just wanted to say I'm sorry and I'm glad you've come here for support!!

[Blairsara]

Thank you so much for all of your comments. Yesterday I went in for a Rhizo and let me tell you, that was sooo not a fun procedure! Especially when they wake you up to ask if you're feeling pain down your butt!
Anyways, I finally found out the real source of my pain. Yes it is my facet joints, and yes it was directly caused by the disc (which I already knew). But this is the freaky part.... my right facet joints... are TWISTED.. theyre stuck... they're fing twisted and stuck!!!!!!!
So my doctor who did the rhizo (Dr. Fuller) made it very clear that I have to see Dr. Regan and my PM (Dr. Apostle - who is awesome by the way) ASAP. This can't be good. I was supposed to have my crim law final yesterday but was able to get an extension till next week. So hopefully this will make me feel somewhat better so I can take my finals.
Again, thank you all for your comments.

Blair

[Jim M2]

Blair,
This is a first for me, I haven't heard of twisted and stuck facets before. It's hard for me to imagine what this looks like. How could one facet be twisted without the other being not-quite-right? Maybe there will be a clue here that helps all of us post-ADR patients with facet pain. Good luck with getting to the bottom of this.

Jim

[Blairsara]

sorry I was on pain killers when I wrote that and wrote the wrong word.. overextension is much better than "TWISTED." so, basically what happened was that the joints on my right side after being overextended became stuck in that position which makes sense of why I have been in a lot of pain since September (before my left side only hurt and not my right side - and everything slowly got worse from when i first noticed the pain).
so ya, not twisted but overextended (which I already knew) but the stuck part is the crazy thing. My doctor said that it might go back by itself but he's not sure and that's why it's so important that I go see my doctor. So I made an appointment and I'm bringing in my family support group :P
This is some crazy stuff.. you know I always said that I liked being unique but *&$%#$ that!!!!

[Jim M2]

Oh, okay, overextension. I've often described my pain as feeling like I've got a hyperextended lumber. So this makes sense with what I've experienced. I like having my lumbar flexed. It gives me some relief.

[Blairsara]

does your pt do the lumbar extension? or do you know just how far to go before hurting yourself? did your joints ever get stuck in the hyperextended position? I'm kind of freaked out about that... that can't be normal. it's like pulling your finger all the way back and having it stay there.. not good stuff.

[Jim M2]

That's exactly the way I think about it! Like pulling your finger way back and leaving it there. If you stop pulling it back right before it gives you sharp pain, that's what it reminds me of. When I walk the sharp pain can appear briefly with each step. It's more pronounced with bigger step size.

Post surgery imaging (MRI, x-ray, CT Myelo) shows a lumbar that's straight, no curvature. The doctor that did CT myelo injection had trouble getting the needle in. He said I might have ligaments that are calcifying because of lack of motion. So am I locked up? The loss of motion was voluntary after I figured out that extension aggravated me. I trained myself to be neutral to flexed in most all situations. Overall it helped alot. Here's an example. I put some plastic bags on the seat of my car. When I get into the car I sit in the seat sideways with both feet on the pavement. Then I lift both legs together and then spin my feet/legs together into the car. Sort of like a woman wearing a short skirt would do it to keep from exposing herself. I do all kinds of weird things like this. Often I can tell people wonder what the heck I'm doing.

I continue to do some of the exercises I've been taught by various pt's over the past 5 years, but I haven't been to a therapist lately.

[annapurna]

Blairsara,

So sorry you had such a difficult time with your rhizotomy. Mine was a piece of cake and I only needed a local anesthetic. I'm also sorry to hear about your hyperextended and stuck facet joint. The facet joints each have a little meniscus just like the ones in your knees. Sometimes those meniscii can get trappped and effectively "lock" the joint (just like in the knees). Maybe that's what happened when your Charite allowed such excessive hyperextension?

Did your images show how bad your facet degeneration is? If your facets have been hurting because of an entrapped meniscus, then it's possible you don't really have much if any arthritis. In that case, you could consider a moderately invasive posterior dynamic stabilziation device like CoeFlex or Wallis to correct the excessive motion permitted by your Charite while still permitting proper motion at that level. The interspinous devices are not nearly as invasive as a fusion or even Dynesys, so, it's really worth considering if your facet joints are in good shape.

While I also have a Charite and facet pain, my situation is very different. I don't get excessive motion either in flexion or extension, however, my facets are truely arthritic, so, motion correction will not be enough for me. Looking back over four year to my pre and immediately post-op images, it's clear to me that I just waited too long to get my ADR after my natural disc collapsed. I will need true facet arthroplasty to really fix my problem, and that technology is just too new right now.

If it ends up that you have really bad facet arthritis AND that's the real cause of your pain, then you might want to ask Dr. Regan about the AFRS (Anatomical Facet Replacement System). I think that he may be one of the PI's in the clinical trial which is getting underway. Sometimes just learning about future solutions makes it easier to put up with today's pain and problems.

Best of Luck!
Laura

[Blairsara]

Jim - Ya, it's really the best way for me to think about it, actually that's how my Dr told me I should think about it - in terms of understanding what's going on. So what happens if your ligaments are in fact calcifying? The example that you gave is pretty interesting. What are some other things that you do? Maybe that could help me. And about people wondering, for me what i think is basically ... who cares what other people think. lol! Do you think that going to a PT would maybe help you? I know that for me it does. My PT does this release and also hands on work to release the muscle tension. But I also do exercises that focus on strengthening my core. One thing that the dr who did the rhizo said that doing the exercises are very important. So that will definitely help. Do you find that doing the exercises help you?

Laura - Thank you so much for all of that info! I really appreciate it. I'm going in to see Dr. Regan and my pain doctor the first week of January to discuss my options. Also, I didnt know that the facet joints had that so that was helpful information! I don't remember what my films showed about my facets, just that they were obviously overextended and that my right one is stuck in that position. I do remember that Dr. Regan said he didnt think I had much arthritus at all. So that's a good thing. But he said that from looking at my old films and not my new ones (it's been a while since I've taken new MRI's and C-T scans).
I'm sorry to hear about your problem. Are you going to go through with that procedure? How long did you wait before getting ADR? I hope that you're feeling somewhat better and that the pain isnt constant.

Thanks again for your comments

Blair

[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]

So today I went in for my doctor's appointment and had a visitor (Mark). The good news: my left facet joint pain that has been the bane of my existence for the past 2 yrs is G..O..N..E (because of the rhizotomy)!!! YAY!!!!! Let's hope it lasts for a while.
Now to the bad news - my right facet joint which has been the bane of my existence since mid October still hates me right now. I'm going in for a CT scan at the end of this week then it's back to my doctor's office to see what is going on with my whacked out joint.

I found this quote somewhere and I just felt that it was perfect for this forum so I thought I'd share....

"When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined."

I hope you guys are doing well!!!

[Poncho]

Hi Blair,

Sorry that I have not responded sooner. I am glad to hear that you are getting relief from the rhizo - yet - the other facet is giving you trouble. Atleast it is somewhat of a "break" of the constant kind of pain you were dealing with.

DANG!!! - You were sitting through 6 HOUR exams?!?!? Holy crap!!! Let me guess they are all essay? I don't think I could do that.....OMG! No wonder you were hurting after the rhizo!!!

As for going to Europe - I have been there twice for treatment.

Once at the Alpha Klinik in Munich, Germany for an endoscopic discectomy.

Then, to Vienna,Austria for a 2 level ADR.

I would say that with the endo - I spent about 1 1/2 weeks before flying home.

Then, after ADR....I would say I was there for about 3 - 3 1/2 weeks after surgery before flying home. Flew first class this second time because I was able to recline, stretch & etc.


Anyways, I hope that you are getting enough pain relief so that you are able to focus more on other things than your back - ya know...... that school thing??? Wish I was in California right now to get away from the weather up here. Mostly rainy, a warmer than usualy this time of year - but I am sure it is soon to change.......

Take care,

Sending pain free vibes,
Poncho

[Blairsara]

Poncho,

Not a problem, this time of the yr gets pretty hectic and crazy, so it's all good. Ya I am so happy about my left facet joint, and now just applying how I handled my left pain to what's been going on since mid September. I wouldnt say it's somewhat of a break from the constant pain because I'm still in constant pain, it's just switched to the other side of my body. But in a sense you are right that it is a break from the left pain.

Yup 6 hour finals, I get double time because of my back so the exams were actually set for 3 hours but I used the whole time. It was both multiple choice and essay, and in both I ended up having to take pain killers during the middle which was during the essay part so I think I might have gotten a little creative? I don't really remember some of the stuff I wrote so lets just hope it sounded like english! haha. It's hard not to laugh at these kind of things!!! I mean it is pretty funny in a sense (or I just have a sick kind of humor)

I still have the weird muscle leg pain going down to my knee on my right leg but I've been told that it should go away soon. I actually went in for a CT scan yesterday and let me just tell you my films did not show good things for my right facet joints. I don't really read those kind of films very well and dont know what to look for but it was blatantly clear that something very wrong and something that shouldnt be happening is going on with my joint. So I'm going in next week to see Dr. Regan and then figure out a plan to get me through this semester, since classes start on Monday.

I hope you are doing well!

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!

[Blairsara]

Laura and Michelle - thanks for your kind words I really appreciate it! Being in constant pain is a daily battle and I look at it as though I will not give up and be defeated.
Like I said I went to the back doctor on Friday and found out the results of my CT scan. But I asked for a copy of the cd with the results for my own records. I just looked at it now and my doctor failed to mention that I have a bulging disc at the L4/5 level and it said that it was 1.5mm. I havent done any research about bulging discs but it said on the results that 1.5 is minimal. If it's at 1.5 now will it continue to grow?
I am a little confused on some of the terms so I was wondering if someone could help me out. This is what it said:
L5/S1: bilateral facet arthropathy; bilateral anterior projecting osteophytes from facetes which are mild sclerotic, left greater than right. What is sclerotic?? than it says that my central canal and nerual foramina are widely patent. What does that mean?
Hope everyone had a good weekend!

[Poncho]

Hi Blair,

Bulging discs - it may be a benign problem at this point. Many people live with bulging discs every day and have absolutely no idea they have them because they present with no symptoms. Then, there are other people out there that have a slight bulge of the disc and are in horrible pain. This is one of the reasons that it is soooo hard to diagnose spine problem(s). AND this is why finding what the cause of your pain is.....

This bulging disc at L4-5 could be nothing.... and I hope that it is nothing....

What dermatome path is the pain following? It sounds like the PM doc has things narrowed down to the facets - considering that you received some relief with the left sided rhizo.... This also makes sense because it corresponds to the arthropathy or enlargement of the facet joints.

Mild sclerotic in this case appears to mean a mild narrowing. Think of the heart when they talk about arteriosclerosis which is a "hardening of the arteries" - basically this type of sclerosis is caused by a plaque narrowing a heart artery - Same concept applies to the spinal canal they are saying that there is some mild narrowing there.... Keep in mind that narrowing and inpingement are two different things.

Now - they are saying that the spinal canal is widely "patent" meaning that there is nothing obstructing the spinal canal - my impression is that they are saying that even though the spine has some areas of "narrowing" there is no obstruction or impingement of the neural structures.

Hope this helps..

Poncho

[Blairsara]

Poncho
Thank you so much for responding, I appreciate it. I'm guessing the reason why my doctor didnt mention that I had a bulging disc was b/c that it's not related to my symptoms, and he believes that my pain is directly related to my facet joints. This makes sense to me because all of my symptoms point to my facet joints and the rhizo significantly helped the pain on my left side, since I don't feel it anymore. I'm guessing that when a bulging disc is a problem is when its hitting the sciatic nerve and then causes pain. My mom suffered from a bulging disc, but didnt have surgery and now she's fine.
I think youre right that the bulging disc is nothing at this point considering my symptoms, but I wonder if it's directly related to the Charite because I didnt have a bulging disc before my ADR.
Again thanks for the info on those terms I tried googling it but was having problems. Hope you're doing well.
I'm going in for a facet block next week so hopefully that will help with the pain.
Thanks.

Blair

[mmglobal]

With more advanced DDD, the doctors describe 'modic' changes to the vertebral bodies. These refer to changes in the bone and are representative of how far you are down the degenerative cascase. After we've had DDD for a while, the endplates start to look like they were dusted with powdered sugar. As you progress down the degerative cascade, these changes become more pronounced. These are sclerotic endplates:



I'm not used to seeing facets described as sclerotic... but Blair's description was talking about osteophytes... are they from the facets or from the vertebral body?

Mark

[annapurna]

Blair,

Thanks for posting your test results so that we can all learn. From what I've understood, the descriptor "sclerotic" when applied to a joint surface refers to densification or hardening of the subchonral bone. This hardening typically occurs in response to a mechanical overload such as would occur in the case of articular cartilage loss (arthritis), or a change in joint biomechanics. Since you've said that your Charite permitted excessive extension to the point of permitting subluxation of the facets, this could be the source of the overload.

The presence of osteophytes on the facet joints would go hand-in-hand with the sclerotic bone as another response to overstress. Osteophytes are typically a joint's crazy way of trying to stabilize itself or increase it's contact surface area in order to reduce stress (load per unit area).

The term "patent" applied to nerve openings typically means "wide open".

If I were drawing conclusions from this description, I'd say that your facets are taking a beating as shown by the sclerotic bone and osteophyte growth. On the other hand, the osteophytes have not yet gotten large enough to even start to close down the foraminal or central canal nerve openings. I'd be interested in seeing the thickness of your remaining articular cartilage on the facet surfaces and whether or not there way any sign of effusion or synovitis in the facet capsules. If you've still got articular cartilage left, then it's likely that the facets would calm down once you corrected the improper loading coming from your ADR. If you have little or no articular cartilage left, you might want to think about doing something else down the road.

Forgive me if I yack too much, but, your CT report reads almost like my MRI reports. I feel like I've found someone else in the same situation as me.

Best,
Laura

[mmglobal]

From http://www.asnr.org/spine_nomenclature/glossary.shtml

discogenic vertebral sclerosis: Increased bone density and calcification adjacent to the end-plates of the vertebrae...

[Maria]

Hey Blair,
I wanted to say how much I enjoyed meeting both you and your mom that day at Dr.Regan's office. Both Dr. Regan and Dr. Apostle were so kind and gracious that day to take the amount of time they did in seeing me, I was truly impressed. I think you have a wonderful team there taking care of you.

As mentioned, I agree that you are an inspiration to us all and I was so impressed to learn that you are in law school and dealing with this spinal "stuff"~ you go girl

No matter who tells us (the patient) what about pain, how long we will have it, how to control it and so forth, ultimately we have to deal with it. No one can most definately tell us that our pain will be infinite or not~ so this is something that we ourselves must move forward with, deal with and hopefully one day overcome or learn to live well with it.

You are young and have the world at your feet~ that is something no one can take away from you. My sincere best wishes for the outcome of whatever you will endeavor to overcome pain and get your spine in order.

take good care and look forward to seeing you again in the future when I may retain you as my attorney???!!!! (before that hopefully)!!!!

[Blairsara]

Hey guys,
first sorry for being mia, I've been really busy since school started and dealing with my back. So I'm here to give a new update. As I said before I had the CT scan and shared the results. I went in for another facet block but this time on my right side and it didnt help at all. Dr. Regan didnt want to see me until 3 months after the facet block. But I cant go through this semester like I did last semester so I want to get a rhizotomy on the right side, which Dr. Fuller thinks is a good idea.
I was a little frustrated that Dr. Regan didnt mention that I had bone spurs, didnt mention that I had a bulging disc, and a few other things. His intern was the one who came in and told me what was going on, and then Dr. Regan came in and said it was my facet joints and wanted to go the same route that we did with my left side. It wasnt until I looked at the CT scan myself and the results and then got answers from you guys plus doing research online that I understood what was going on.
Right now I'm grappling with what to do next, in terms of fixing this problem. The only thing that can fix it right now is a fusion, or I wait a few yrs for the new procedure. But I dont know if I should do the new procedure after the problems that I've had from the disc replacement. I dont want to end up being a guinea pig for and keep going in for these new procedures. What happens if I get the new one and then the same thing happens.. then what I keep waiting and then doing more new procedures?
At least now I finally figured out my daily pain cycle and can take my meds accordingly. Dr. Fuller put me on lyrica because of the burning, radiating, pulsating, aching etc... and it has helped a bit.

Maria - It was such a pleasure meeting you as well! I'm glad to hear that your meeting went well. Dr. Apostle is great, kind of cute too huh?! I think youre right about having them as a great team, but I am going to go to different doctors, a few neurosurgeons and some other ones to show my CT scan results and to see what they think I should do for my next course of action - fusion vs. new procedure.

Thank you so much for calling me an inspiration. The one thing that I've learned from this whole experience is that I can help other people who are going through constant pain and are having a difficult time staying positive and not letting it defeat them. I look at it as though my back will not control my entire life and my dreams, but rather I deal with it face on and will get through anything.

When are you going through with your surgery? I hope that everything goes well and my thoughts are with you!!! Take care and good luck!



Laura -
Thank you so much for all of that information.. you rock and I totally appreciate it. So thanks!! It really helped me get an understanding of what's going on since I didnt get a straight answer from Dr. Regan's intern and Dr. Regan just said, "its your facet joints and lets take the same course of action that we did with your left side."
I'm curious to know what your MRI results said. For me, it's good to knwo that there are people out there that are dealing with the same kind of problem as me. It's hard considering I'm in that 5% group. You had ADR right? Are you thinking of waiting for the new procedure or doing a fusion?
I hope youre doing well, and again sorry for taking so long to respond.

Thanks again you guys for your kind words, I really appreciate it and it really does mean something to me. Thanks.

Blair

[Blairsara]

Mark
It was from my facet joints. The results are all dealing with my facet joints minus the bulging disc.

[Maria]

Re scheduling surgery~ I've been given a brief reprieve from pain and am enjoying it immensely~ I wonder how long it can last? I'd like to schedule surgery for when it's over!!!!!

However, WC being what it is, I'm going to have to name a date and change it if necessary. Before I do the spine surgery I will be doing a bunion surgery~

Last time I did this on the left foot.. since my gait was off for nearly a month (gimping) my back went out for 8 weeks.. and WC wouldn't authorize an ESI so I had to just live with the pain and get over it. Took too long!!!

Hopefully I won't have such a lengthy recovery with this bunionectomy tho I do want to get it over before I would have spine surgery so I wouldn't tork my gait afterwards intentionally.

I hope you will soon get some relief from whichever treatment you undergo! Take good care and hope you are doing OK! Maria

[Blairsara]

Maria,
I am so glad to hear that you're doing really well! congrats! I'm sure youre catching up on things that you were unable to do while you were in such excruitiating pain. I hope it lasts a long time!
Good luck with the bunion surgery. Is it painful? I hope not, and I hope it doesnt affect your back like it did the last time. what's an ESI? I hope you have a fast recovery, and that it doesnt take away from you living without back pain at the moment. When are you going in for that surgery?
No new updates for me.. basically the same thing. I need to contact Dr. Regan's office to find out when I can do the rhizotomy. My PT gave me a name of a great accupuncturist so I'm goign to start doing that. Figure I'd go to him the days that I'm not going to PT. Right now I'm just trying to focus on managing my pain so I can get through another semester. I just hope that I dont have to go through my entire law school education like this.. I know I can do it, but I really dont want to. But we dont always get what we want.

I'm looking into going to other doctors, neurosurgeons and other spine specialists, any recommendations? Considering that I'm going to have to have another major surgery in the near future, I would like to get second and third opinions on what I should do - fusion vs new procedure. Like I said in my last post I'm really afraid that if I do this new procedure I'll end up in the 5% bracket again, and I dont want to end up being a guinea pig. Do you know of anyone who had ADR and than ended up getting a fusion? Did they have problems with their surrounding discs?

Again, its great to hear that you're doing well! I hope it lasts for a while and make the best out of it! Take care. Hope you had a great superbowl weekend!