Bad news update

[Blairsara]

As some of you know I have been having a lot of problems for almost three years because of facet joint pain caused by the Charite artificial disc. From the time I had the surgery in June 2004 to the present my joints have gone from completely healthy to completely degenerative. I have bone spurs, forming arthritus, and now a minimal bulging disc at L4/L5.

Since this past September things have gotten much worse. I was off pain meds for a long time, but since the end of September I have been back on them every day. My symptoms have gotten worse - my hands and feet go numb (which hasnt happened since before i had the Charite ADR) and I have tingling running up and down my back. The last time I went to see Dr. Regan he said to have a facet block on my right side, which I did and it didnt provide any relief. I had a rhizotomy in December which helped, but only lasted for a few months. I had another rhizotomy last week on my right side since the facet block didnt work, but it has yet to provide any relief. The doctor who did the rhizotomy said that it might not help because my pain is all "mechanical."

So now to the bad news update. I saw Dr. Lanman and Dr. Regan in the past two weeks. Both have said that there is really nothing left that I can do besides having the disc removed. Basically, I am going to have the disc removed and have a fusion. Dr. Lanman wanted to also go through my back and cut out the bad joints and put in a cage and screws. Dr. Regan didn't think that I should do that in addition to having the disc removed and a fusion. Instead, he recommeded a less invasive surgery that entails taking out the disc, fusing the spine, and drilling four holes in my back to put in the screws and the rods.

I am going to have the surgery at the end of May once finals are over with Dr. Regan. It's the least invasive and the most effective way of treating this problem. I've come to the point where I have to have it removed because I can't deal with being in this constant state of pain where every day I'm at an eight or nine out of a pain scale of 10. I think that if I waited until law school is over I'd probably have a break down, and that's the last thing that I want.

I never thought that I'd be back in this situation... that my back has completely taken control of my life, where I have no life except for dealing with my back and trying to do the best that I can in my classes. I never thought that almost three years after my surgery I'd have to have the disc removed. But life, as we all know, throws us many obstacles that we have to face head on and deal with. But overall, I'm glad that I'm going to have it taken out because this is really the only way that I wont be in this much pain.

Only three other patients out of around 108 from the study that I was in had to have revisions/removal. I guess I'm part of the lucky .04%!

I hope that my experience can be a learning experience for those who are thinking of having ADR, or are in a constant state of pain and have trouble remaining positive and not let frustration and anger consume them. It's all about never giving up - never give up on hope that there will be an answer, that there will be a solution, and that one day the pain will stop.

I hope that those who have had the Charite disc have not or will not have to deal with what I've gone through. i don't wish this upon my worst enemy. But it has made me have a clear and true perspective on life. I hope one day we will all be pain free!

[mmglobal]

Sara... I'm so sorry that you are having to go through this. What do your cervical / thoracic MRI's show?

Mark

[annapurna]

Blairsara,

I can't tell you how sorry I am that you are going through this. Living with an 8-10 pain every day and still taking law classes? You are an amazingly strong person and a wonderful example of human perseverence.

On the bright side, come next fall, your fusion revision should be well healed and you should be looking forward to a "low-pain" fall semester. If anything happens to your L4/L5 disc or facets in the future, there will be better technology by that time that will very likely address the problem.

Since I have similar (albeit MUCH less severe) facet symptoms behind my L5/S1 Charite, I would be interested to learn why your facet pain suddenly became so bad? I wonder if the facet degeneration got so bad that you are now dealing with some stenosis from the facet osteophytes?

Best of luck (you sure deserve it!) and thanks for keeping us posted on your situation and decisions. Our prayers and thoughts will be with you this spring.

Best,
Laura

[dshobbies]

Blairsara,

I am so sorry you are experiencing painful problems with something you hoped would have been your cure. I can only hope that your revision surgery brings you the relief you so desperately need and deserve.

To be going though law school while in this severe pain is a testament to your character. Many in your situation just give up.

I wish you every success in your upcoming surgery. My thoughts and prayers are with you.

Dale

[Maria]

Sara,
I think you've reached the point where when someone asks him/herself "should I have surgery or not?" you know the answer...

While I'm really sorry to hear that you're in that much pain, and that you have to have another surgery, I do think that your decision is one that is made because of necessity, and that's the bottom line~

You're an extremely positive person and I look forward to your future posts~ and again, I'm real glad I got to meet you and your Mom in person as I feel that much closer to you and your situation~

take good care, Maria

[Blairsara]

Maria and Mark - quick correction, my name is Blair, Sara is my middle name.

Mark - the CT scans showed that my facet joints have greatly degenerated since my ADR and that it progressively had gotten worse to where I am now. It showed facet arthropathy, bone spurs, stages of arthritus, a bulging disc at L4/L5. Also, this is all at my L5/S1. I called you after I met with Dr. Lanmen to tell you what was going on (you sat in on my meeting with Dr. Regan when Maria came to see him and Dr. Apostle).


Laura – Thank you so much, I really appreciate it. It has definitely been very hard and frustrating these past 6 months, but I swore to myself that I would not let my back interfere with getting my law degree and doing well in my classes. Surprisingly, I can write well while on pain medication. Some of my professors and the person at the disability office told me that if I had not told them what was going on with my back and how bad it was, they would have no idea by just looking at me. That made me feel better, because the last thing that I wanted was for everyone to know how bad things were that didn’t need to know. I’m a private person, and I don’t like random people who might not have a clue about what living in this kind of pain is like.

Thank you for calling me a strong person and an example of perseverance. Every day I give myself a pep talk, telling myself that I won’t get upset, frustrated, sad, or angry because of what’s going on. Everyday I say to myself that I will never give up. If the pep talk doesn’t work, I just look in the mirror at my tattoo that’s about my ADR surgery and my recovery. That knocks some sense into me. :P

I know that I have done everything I could to try and alleviate the pain. I believe that since there is nothing else at this point that I can do, that to let it consume my mental state would mean that I let my crappy situation defeat me. We all go through hard times in our life, whether like us it’s pain, or being scarred from traumatic events, etc… I refuse to have it consume my life and destroy my ambition of doing very well in law school and becoming a successful attorney.

I am definitely happy about the fact that after the fusion and the recovery I won’t be in as much pain. That is the one thing that I hold on to, and even before I knew I was going to have the surgery I held onto that idea that one day I would have a revision procedure that would stop this pain. I think that looking at the bright side of this crappy situation has helped me not only for the present, but also for the future when I will be faced with difficult situations.

First, I am glad that your facet joints are not similar to mine. I hope that they never reach that stage. The reason why the pain has gotten so bad since September is that the degeneration is getting worse. The Charite disc put too much pressure on my joints, allowed them to extend too far, and didn’t move properly. I know that the bone spurs are sclereotic but I don’t know if I’m dealing with stenosis. What exactly is that? Again, thank you for your comments I truly appreciate them.


Dale and Maria -
Thank you so much for your kind words. Hearing these things from you guys helps reassuring myself that I'm handling this the best possible way that I can. Maria, I think you are exactly right in terms of a decision of necessity. There is really nothing else I can do in terms of outpatient procedures. The facet blocks stopped working, the rhizotomies didnt really help that much. The pain killers arent that effective, and physical therapy hasnt provided as much relief as it used to. I truly believe that I am making the right decision, that hopefully after I recover from the surgery I won't be in as much pain as I am now. Again, it was also a pleasure meeting you as well. By the way, how are things with your back? Do you have a date for your surgery?

As of today my surgery date is May 24th.

Again, thank you all for the kind words, I really appreciate it. I hope that my experience can be a learning one for others dealing with constant pain, or problems stemming from the Charite disc.

Thanks.

Blair

[ans]

Blair: You're amazing and I wish you my very best.

Allan

[Maria]

Blair,
Reading what you wrote about the facet degen at L5S1 has made me think that possibly the fusion at this level is the best option for me even tho mentally I detest it... seems like I have some facet degen going on but between Dr.D and Dr.R it seemed like it may have been negligible and ADR could be a possibility there. Of course WC isn't hearing of a two level disc replacement while only one level is FDA approved.

I have been doing quite well actually. Much less pain, much more active. Of course, I don't work, don't go to school and can kick back at my leisure. It's just that some activities that were previously difficult to impossible to do, I can do easily with no repercussions and I've been riding on the back of a BMW motorcycle intermittantly which is something I never thought I could do.

I'd even like to buy my own motorcycle!! Will start w/riding my bike tho~

Ok, all that being said, I do have a surgery date of May 10th and I was planning to have bunion surgery on my right foot beforehand. Recently my 3rd left toe had a tendon go into spasm and lock so my toe wouldn't straight out, and was flexed into a painful position. 3 cortisone shots later it's a bit better but still painful to bear weight on and I have to splint it to walk .

Podiatrist is talking multilevel toe surgery to cut bone and straighten 3 toes out vs. cutting tendon to one which would leave it floppy and other toes compensating w/grip.

Who'd thought my toes would crap out on me????!!!!! Anyway, I'm taking it day by day to see if this will improve w/o surgery as I'd like to avoid it if possible~

So far, that's what's going on w/me~

[Blairsara]

Maria,
I'm so sorry to hear about your toes. You're exactly right... who'd think that with everything that's been going on that your toes would crap out.

I don't want you to think that you should do a fusion because of what's going on with me. I'm in a very low percentile with everything... I think out of the 5% of the people to end up with facet joint pain after ADR I'm part of the .05% of people to need a revision. Also, I think that the other discs don't allow as much movement as do the Charite. But I'm really glad to hear that your back is doing better than it was when I met you.

Tomorrow I go and see Dr. Fuller about time release pain meds. Both Dr R and Dr L recommended that I go on them because at this point there is nothing left to do besides the surgery. I'm worried that I won't be able to get through these next two months of school. I wish that I could just have the surgery now and get it over with but I cant. Oh well, I've lasted the last 6 months, I can go another 2!

Is Dr. D doing your surgery on May 10th? Are you going to have the bunion surgery? Again, I'm glad that you're doing much better! I hope that it continues to get better, and that you might not need the surgery. That happened to my mom, she had a bulging disc hitting her sciatic. She went to Dr. D in the early 90's and he said that she could have surgery or do nothing. She did nothing and it went away after about a year or so.

Anyways, I hope you had a good weekend, and good luck.

Blair

[Maria]

Blair,
Yes, it's Dr.D that I'm scheduled to have the surgery with. I have been commenting on how great I've been doing and the last few nights my spine has been really bothering me as well as mornings. Really aching/painful.
I took my Methadone today and my back didn't feel as good as I would have liked, but I was pretty busy this morning and had to sit driving back and forth a bit.

I don't know whether I'm still tender from a kind of long drive this last Weds (2 hours back and forth) for which I still didn't actually sit completely but rather reclined the passenger seat and laid on my side as best I could.. or just starting to really feel that it's time for another ESI as it's been 5 months from the last one and usually by the 6 month mark in between I'm a screaming back pain mess...

My bad back history is very very long so to have a good 5 month period really isn't like saying I'm well, but perhaps I've been fortunate enough to do well, enjoy myself and question whether surgery is necessary "right now".

I did find that when my toe was really painful and I was limping, I had some pretty intense radicular pain on the right side going on, and additional pain across my low back that made it more painful than usual, to the point of curtailing activities to some degree.

If I were going to school or working, I would have had this surgery already quite some time ago as I'd be flat out horizontal screaming in pain ~ yep~ that'd all have made up my mind for me!

Next podiatry appt. is this Thurs ~ no surgery scheduled yet. Will see what's up by then~

[Poncho]

Dear Blairsara,

I hate to hear of your continued pain. I wouldn't wish this on my worst enemy.

You have demonstrated such strength through all of this and have set such a positive example of someone living a life of chronic pain. I certainly hope that your surgeon can correct the mechanical issues causing your pain and get you back to living the life of a 20 - something law student.

I encourage you to come back to the site often - even it is just to vent out frustrations. It definitely helps to get things off of your chest.

Sending you a PM and pain free vibes (as Mark would say)

Poncho

[fortitudine]

Blair,
You are amazing. I have been feeling sorry for myself lately because I have to get a total knee replacement and I'm probably twice your age with much more than half of my life lived in great health. But having read your posts I feel pretty small and will take inspiration from your strength and determination. I'd give you a law degree based on that alone!

BTW I know nothing about what you have been taking for pain, but I'm on time-release morphine ( as much as I need which seems to be 60-80 mg./day) for knee pain and I found it made me dopey and sleepy for a couple of hours the first day or two I took it and then it seemed to settle down. I'm sure you'll be okay at school. I hope it helps.

[Blairsara]

Fortitude,

Thank you very much. I appreciate your kind words. I'm sorry to hear that you have to have a total knee replacement. I hope you have a fast and as pain free recovery as possible.

Don't feel small! That's the last thing that I want. The one thing that I hope for, from my experience with all of this, is that people will learn from my own experience. That life throws us obstacles and no matter how difficult they seem and how much they suck we will be able to get through them and come out on top. These past 6-7 months have been very difficult and the one thing that got me through it was the phrase "never give up" - never give up that the pain will stop; never give up that there will be a solution; never give up that other people hopefully won't end up with the same problem. I wouldnt wish what I have gone through on my worst enemy.

For pain I was taking immediate release oxy but it didnt do anything. I saw my pain management doctor last week and he put me on time release oxy 10mg 3 times a day, but I'm still in a lot of pain. It seems to work half of the time. I'm going back next week to give him an update. It was either time-release morphine or the time-release oxy. My goal until I have my surgery is to get through these next two months and pass my classes, and I know I won't be pain free but hopefully I wont be at a 9-10 level of pain every day. I'm going to see if I can take the 20mg 3 times a day instead of the 10. Maybe that would help more. I was up last night till 6am because I felt like my right side was going to collapse and the meds didnt do anything.

Again, thanks for your kind words. I truly appreciate them. When are you having surgery on your knee? I hope it helps.

Blair

[fortitudine]

I think Oxy and morphine are similar in strength - I don't know for sure though - so perhaps my experience will help you.

My doc told me that even 60 mg a day is a fairly low dose, and to play around with the dosage til I found what worked best. She knows it's for the short term and I guess she knows me well enough to know that I hate taking any drugs and will not get carried away. She gave me a prescription for 15 mg MS-Contin, so I could try different combinations. I tried all sorts of alternatives, starting with just 15 mg at night. Right now, I'm taking 15mg. twice a day(7 am and 3 pm) and 30 mg at night to help me sleep. Still the odd sleepy feeling but no problem with work (I'm a freelance writer). I may crank it up more if the pain gets worse. I've heard it said that if you really need the drug, you won't develop an addiction. I sure hope you can get that pain level down to a more bearable level.