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

[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

[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