New Doctor+ and Failed Back Syndrome

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Hi all I just went to a new Pain Management doctor in Indianapolis because my old PM is no longer accepting my insurance. Anyway the reason I am here is to tell you I have just been diagnosed with Failed Back Syndrome-or Post Laminectomy Syndrome. They are having me get an MRI of my brain and entire spine and sent me home with a dvd about spinal cord stimulator. I understand how the instrument works but I just don't see the purpose of doing this right now because a recent MRI of my neck shows spinal cord compression and severe stenosis in the neural foraminal area and I suspect something is still wrong in the lurabar area as well. So how is this failed back syndrome? And why would I get a stimulator if I have structural problems in cervical and possibly lurabar areas? Does this make sense to anyone? Thanks in advance, Dee:confused:
 
Hi Dee,

I am so sorry that you have received this diagnosis but I want you to stop and take a few deep breaths. Please don't do what I did and sink into a depression and think that it is over because it is far from being over.

What I have learned thru my failed back syndrome diagnosis is that it means different things to different folks and I will try to explain this to the best of my non-medical ability. Failed back syndrome means to some drs as you suspect that simply that:

1. the surgery has failed. For whatever reason, the fusion/union or decompression did not take place. This does not mean that surgery will not fix the situation.
2. Some other drs take it a step further and use it to mean that nothing can never be done to fix it. In their medical opinion, nothing else can be done surgically. You have exhausted all of your surgical options.
3. others feel that your original surgery was a success meaning fusion took place but you still have pain for some unknown or known reason.

Personally in my diet dr pepper opinion for what it is worth, I believe if they are saying your recent MRI shows spinal cord compression and severe stenosis in the neural foraminal area, something can be done. I would without a doubt NOT proceed with the scs and I would go to a teaching hospital or someone with a very well known reputation in revision surgery to get their opinion. I know that there are some drs who will review your MRI's and CT scans for a nominal fee before meeting with you to pre-determine if they can help you or not before bringing you in for an appt. If you want some names, I can find them out for you and share these with you. There are some in California and one in NJ/NY Area.

I am basing my opinion on my case - one year ago I was told that nothing could be done and I would be in pain for the remainder of my life. Now I am being told that my failed back syndrome is a result of a non union and the next level is blown - they are recommending another surgery. In fact tomorrow, I will meet with my surgeon to make my decision to move ahead with it or not. So please honey.....don't give up hope. Go see a new dr.

Also I would like to share my 2 cents on this scs. Read the boarRAB there are alot of problems with these things. Yes, there are successess with them too. For those that have success with them, PRAISE GOD.

My pm doctor believes these should be used as a last resort when medications are not taking care of your pain, all surgical options have been explored with at least 3 medical opinions, and that they are a huge $$ maker for the pm docs.

My heart goes out to you, but don't give up, follow your gut instincts. It does not sound right. Remeraber, I am here for you and you still have options if you have compression problems or bone spurs in my opinion.
 
Hi Diet, It is so good to hear from you-it has been awhile.How are you doing? Hope all is well with you and your family? I am glad that the new office is scheduling an mri for my brain and entire spine the 11th so after I hear those results I guess I will have more to go on. What just does not make sense to me is that the new doctor would even suggest a stimulator after seeing my cervical mri from last fall. Even I didn't know how bad it was until I picked up a copy to take to the new place. It says I have some cord impingement and bone spurs etc... Oh and the natural curve (lordosis) is straitening so there are obvious structural issues. From mri reports it shows that my fusions healed but other problems arose so there is a reason for the pain I am feeling. It really is frustrating isn't it. I guess if we don't advocate for ourselves no one else will. Right now my thinking says get the mri and go directly to a neurosurgeon maybe 2 and get there thoughts on what I should do. And maybe after everything has been evaluated then I would try the stimulator. As my mom would say, " They are putting the cart in front of the horse" lol Take Care, Dee

PS and thank you!!!:)
 
Not a problem and I truly hope that I reassured you somewhat. You take care of yourself and please keep us posted.
 
Hi, Dee. Granted I don't know the details of your situation, but... I've had the SCS concept brought up in app'ts, too. I think they just throw it out there as a possible option. I wouldn't get too upset by it at this point. It sounRAB like you are getting good care in that they're looking at EVERYTHING (brain & spine) before taking any next steps.

I completely concur with Diet on considering a 2nd or even 3rd opinion. Your doctors should not be threatened by this. I have been very surprised by the variability in dr's recommendations using the same MRI.

I think I may be on the "Failed Back Syndrome" track, as well. I'm getting an MRI next week to see if there is anything else wrong. If not, I'm in the "bargaining" phase where I will just have to learn how to deal with my current abilities. I haven't given up hope yet that there is something that can be done. But, I'm prepared that it may be a very real possibility very soon. I've got plenty of Kleenex ready for that day.

It's great you're asking questions and gathering information. I believe you will get the best care for yourself this way.

Hang in there,
- Margaret
 
Hi chatter, I just wanted to Thank You for your support. It is really hard to switch doctors which is part of my problem-it takes me awhile to trust. I have had some bad experiences so I have gotten to the point where I question everything. I am glad that they ordered the complete MRI I know something in my neck and low back just doesn't feel right. I guess I will have a better idea of what is going on after the 11th and I will post the results when I get them. Again, Thank You, Dee:)
 
Hello All! Just wanted to throw my 2 cents in as well. My new PM doc says that Failed Back Surgery Syndrome is when a person has the same pain, or worse after a spinal fusion. It doesn't have to be due to non-fusion. I fused beautifully and earlier than most people after I had a spinal fusion in Oct.07. My pain level now is much worse than before surgery and I am practically an invalid due to this surgery. I drove, cooked, did some cleaning, etc. before surgery. Now I am unable to do any of these things. My PM said that my pain is due to scar tissue. FBSS can be caused by many things. You can find a lot of info about this by simply putting "FBSS" in a search engine of a popular on-line encyclopedia. I was shocked @ what a huge money maker this surgery is for doctors and hospitals. Equally shocking is the sucess rate is much lower than what my surgeon told me. In the past two decades there has been a dramatic increase in fusion surgery. Facts I didn't know about prior to surgery. So, I guess my point is "knowledge is power". By all means get a dozen second opinions if thats what it takes till you find a doc that you can feel comfortable with. There is always hope. I was devasted by this diagnosis as well, untill I found the right PM doc. With extensive PT and the right meRAB, I already feel better; and you can too!! ....:)janiee08.
 
I switched doctors because I moved. I had a non-union and needed to find a doctor who was willing to take on my "damaged gooRAB." It was not an easy process finding a doctor who would treat me. That was not fun at all! So, I am surely sympathetic to the task of finding a doctor you can work with. But, there are great doctors out there.

As best you can, try to go step by step and make decisions from each bit of information you gain. I say this as I'm working myself up about the MRI I'm having on WeRAB. - not the MRI itself, but the possible recommendations or results following. :)

Do post if/when you know anything. I'm hoping that however it comes out, you will eventually feel better!

- Margaret
 
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