Hi I'm a New Member (Lumbar Spine Problems)

[Susanna]

My name is Susanna, I'm 47 and as my neurologist puts it...I'm a mess! I was in an auto accident in 2007 in WI where the other driver T-Boned me in my drivers door at 45mph. trying to make a left hand turn, while talking on her cell phone. She didn't see me in the intersection, obviously, being distracted. Being only 5'3 and at the time only 110 lbs, the airbag did a good number on me. It collapsed my septum, hitting my head pretty hard, the seat belt tightened and while securing me, also squeezed me so tight that I had bruises all over my body. Both arms where badly bruised, not sure from what, the right hand was on the stick shift and took a good jab to the arm, causing a frozen shoulder injury that appeared later.

The roof of the car collapsed and the engine was moved over. The police were amazed that I was a live. The other driver had actually accelerated to miss the "on coming traffic" so she could make her turn. The police said that she had many tickets on her license and had no insurance. Okay then!

I am a dental hygienist by trade, and I have to sit for long periods of time. I have to bend forward over patients all day long. I had a CT scan which said my brain was ok, but they didn't do an MRI. Even though I was in pain, I had to work. My nose kept bleeding without warning, I should say gushing. I spent more time in the ER trying to get that taken care of. After three cauterizations they finally got it to stop. My doctor ordered an MRI and then sent me to physical therapy. That caused me such great pain that my husband made me stop. Every time she move my neck, I thought I was going to die. The PT also suggested that I see a message therapist, so I did and that actually helped more than anything the PT did for me.

But my pain just kept getting worse. My doctor then sent me to see an orthopedic specialist. I had to see his doctor that reviews each patient first before I could get in to see the actual surgeon. But she said that there was nothing wrong with my neck (they had only MRI'd my upper back and neck so far) She said I just had what she called "dust bunnies" from years of wear and tear. So she ordered injections in my neck. None of which helped. I had 3 of these. During this time (we are now in May) I have had to stop working because I am in so much pain in my neck and my right arm and hand. I can no longer even hold an instrument. My toes have begun to go numb. She says that I need to wear better shoes.

My husband has now taken a promotion to Alaska and we move there in September. By this time I can no longer move my right arm away from my side and it is very painful. I find a Chiropractor and start to see him. He gets my MRI and refers me to a neurologist. The neurologist tells me I have Adhesive Capsulitis (frozen shoulder) in my Right shoulder, but what concerns him more is that my reflexes in my feet are what they call Babinski's reflexes. I saw the Surgeon on a Monday and they had me in surgery on Thursday. I had four levels in my neck fused and they trimmed off part of the vertebrae to take the pressure off of the spine. I got instant relief! But he said that my lumbar region was not surgical. I didn't know what that meant at the time. But now I understand that that meant that my disk wasn't bad enough to do anything to.

I started Physical therapy a month later for the frozen shoulder and for the lumbar pain. I fell on my left shoulder in January of 09 and my Left shoulder froze in February. I finished Physical Therapy January 2010. Just after I was discharged, I missed a step when walking and my lumbar disk herniated. (as shown by the MRI) They tried an injection the beginning of February, with no results. Then they tried surgery, removing the herniated portion of the disk, still with no results. They did another MRI and determined that they disk had re-herniated. (I did nothing during recover for this to happen!) They tried medication and bed rest. I gained 35 lbs from January to March! They did another injection. This time I got relief from the pain down my right leg!!! They sent me back to physical therapy for 6 weeks.
Six weeks later and I am back to square one. I have the leg pain back going down my Right leg, and now I have a pulled muscle on my left side of my low back.

I think my neurologist had it right! I'm a mess!

So I want to know more about the new disks that they are coming out with. I want to know if I am a good candidate for one.

I see my doctor tomorrow 5.14.10, and will be talking to him. But my only hope would be to get in on a trial, as I doubt my insurance will cover it and I don't have the cash to pay for it.

[jss]

Susanna,

What a terrible story! I know that this isn't helpful at all, but you are a mess!

There are many artificial lumbar discs that are FDA approved. As you noted, getting your insurance to pay is another story. If it is determined that you are an ADR candidate, I would encourage you to not take a denial from your insurance carrier laying down. Google "Laurie Todd". She claims very good results in getting insurance companies to overturn their initial denials of coverage of a procedure. Her book and associated CD on how to win such coverage from your insurance company is $35-40.

I just went to clinicaltrials.gov and searched for "artificial disc", and saw 24 trials pop up. A handful of them were in the recruiting stage. Perhaps some of them are lumbar?

A note on ADR with disease at adjacent levels... Most trials will accept only patients that have disease at exactly one level. To test their device, they have to eliminate as many variables as possible. The Nuvasive NeoDisc trial that should be nearing completion was going to accept me with my two adjacent fusions; but that is unusual. Because most artificial discs underwent trials in patients with disease at only one level, when insurance companies do cover ADR, it is usually (but not always) under the conditions in which the trial was conducted.

Is your situation such that you will not be able to travel outside Alaska for treatment?

Good luck, Jeff

[ajj1001]

Hiya Susanna, Welcome to the forum and I hope that you get a longer term solution to your lumbar issues soon.

alison x

[Gilbert P]

And

You have been through the ringer, How is your neck at this point?
As for your lumbar this is the place to read and learn that their is a solution for your spine. You just have to do your homework and find the correct surgeon and procedure. We are here to help and support you.
I also have a recent herination on my lumbar spine and now seeking a solution, Germany may be my best answer?

Keep us posted and let us know how we can help

Good Health

Gil

[linda]

Dear Susanna,
Welcome to the site. I'm so glad you found it. It has been so much help for me even though I can't stay on the computer very long at a time due to lower back pain. I'm sorry you have so many things going on. How did your appt. go today? I hope you got some positive feedback. Which disc or discs do you think are affected? Looking forward to hearing from you soon.
Linda

[Susanna]

Thanks for the warm welcome everyone!

Well I met with my surgeon today and we discussed all my options. He is a very good surgeon. He does it all. He even does the Pro Disc L (I hope I have that right!). He is one of the best surgeons in Alaska. I found out that the disk that is bad is the L5 S1 disk. Does that make sense? I'm not very good at that. I had so many disks in my neck fused that I can't remember the levels, just that it was 4 and I am completely pain free from it. Every once in a while I get a stiff neck from keeping my neck a certain direction, but that is it. I have pretty good mobility. The surgeon who did that was a different doctor, also very good but horrible bed side manner and I just couldn't go back. He always ran 2 hours behind on his appointments and would answer his cell phone to talk to his cleaning lady (I am not joking!). Very rude!

The surgeon I have now is very is very conservative. He even told me that if I felt like I needed to, I could go get a second or third opinion. I don't think it's necessary.

This is the information he gave me today:
1. Because my pain is due to the ruptured disk and is mainly leg pain, I wouldn't qualify for a new disk.
2. What is causing me pain is the stuff that comes out of the disk, that is irritating the nerve.
3. If we JUST did the disk replacement, that wouldn't remove the stuff that is already leaked out, and that it is very hard to get all of it from the front access.
4. IF I end up with back pain once we have removed the disk, then I would qualify for the disk replacement.
5. Other wise it would be "off label use" and no way would insurance pay for it.

In my research on ADR, it was advised to find someone who does fusions and disk replacements to get a balanced view point. I really feel like he is giving me that. He doesn't feel like being a part of a study is a good idea because he said that you just don't know how good that product is. He said it's kind of like all the fad diets out there. There is some guy out there (I don't know if he is just in Alaska or what) that does these laser surgeries and he has had to fix a bunch of people that this guy has worked on. He said that just because it has been used in Europe doesn't mean that is is safe. They don't do any kind of real studies over there.

I am not sure that I agree with the Europe comment, though I know he is just looking out for my best interest. He talked to me about the very first ADR and what a failure it was. He just doesn't want me to end up with something like that.

He did feel that my insurance would have no choice but to pay because this product is approved by the FDA, but I have a very lovely insurance and have already had to go a few rounds with them to get things paid for. It is a "self insured" type insurance. So the state has no true control over it. Truly a lovely plan!

So our game plan as of right now:
1. EMG on Monday to make sure there is no permanent nerve damage.
2. I will see him Thurs. to go over the results
3. Depending on the results (assuming no nerve damage) Injection to reduce pain temporarily (Hopefully!)
I am going on a trip to the lower 48 at the end of the month for a week and 1/2. Not looking forward to that plane ride! Although he wrote me a script to have a bulk head seat, not sure if that will work.
4. Have surgery to remove the remaining disk
Not sure if this will be before or after my 2nd trip back down to the lower 48. My daughter AND my sister are getting married and so I will be there for about a month. There will be about 6 weeks between my two trips. I don't know if he will get me in for surgery between the trips or not. He doesn't want me sitting and flying until I'm healed.
5. If this doesn't work, we will either look at fusion or disk replacement. It depends on if I have leg pain and /or back pain.

Comments/ Questions/ Suggestions?

Thanks everyone! You guys are great!
Susanna

[New-disc]

Susanna,

Hang in!! Sounds like your on the right path....

Please keep us posted

Todd

[Susanna]

Susanna,

Hang in!! Sounds like your on the right path....

Please keep us posted

Todd

Todd,
I was wondering, what kind of pain you had before you had your implant.

Susanna

[sportsnut3007]

If you do end up going for the ADR, I would recommend getting in the Freedom Lumbar Trial in Texas at the Texas Back Institute. If you dont get the new disc, you get the pro disc. And your surgeon is right in a way about some of europe in that they are more surgery happy etc, but remember knee replacement started out in europe I believe also and now it is a main stream surgery. Try to avoid the ADR or fusion if possible though. But again if you do end up getting ADR and cant afford to go to Germany for ADR, then if u want adr get in the freedom clinical trial in texas. But I would strongly urge you if you do get ADR, go with the Ranier or Freedom Lumbar or if you can find someone one in my humble non medical opinion if you can find anyway to afford it. Just know with ADR's that revision is basically a very complicated surgery. There is a guy named Mark on here who had a revision ADR to fusion on here and said he wishes he had fusion in first place. They have done lateral removals I think of the pro disc before. The freedom lumbar disc looks like it would last very long, but on the flip side removal I think is probbably nearly impossible for it. The Ranier is an even newer disc than freedom but has that elastomer design which one would think would be good and last a long time. Also, In case of removal I suspect would be easier since it has no keels. But again, no long term studies to see if its good or if it can hold in place with no keels. If you end up having to go with fusion on l5/s1 I would say go with the Trans One approach if dr thinks a fusion done like that would help you. Again, take advice of Doctors though and not just my rambling, always do your own research and listen to good drs.

[Justin]

Hi Susanna,

Welcome to the Spine Patient Society. It seems like you have made yourself at home, which is great. Good luck with the EMG today.

Keep us posted.