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  #1  
Old 05-24-2010, 04:58 PM
waynes waynes is offline
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Join Date: Jul 2008
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Default Another newbie

Hi All…..

My wife Becky has been struggling with neck issues for several years. We believe they originated from a car accident more than 20 years ago. When the pain/discomfort started (about 15 years ago) her Doc at the time found nothing at the time and sent her to a shrink. (it’s all in your head). Living with that for a few years we started seeing a new doc who diagnosed her with Fibromyalgia and started treating her for that with no appreciable relief other than knowing it really wasn’t in her head.

Fast forward a few more years. Becky tripped on a sidewalk and tore a ligament in her ankle. New Doc (the other left active practice to care for her kids full time). During an exam new doc commented on how tense Becky’s shoulder muscles were. The actual comment was hard as a rock, like concrete. Further discussion led us to an orthopedic surgeon for her shoulder. Wound up shaving 1cm shaved off both sides of her AC joint and repairing a rotator cuff. After a year with that recovery Becky’s shoulder is much improved but the neck and arm pain is still an issue. Referred to Pain management doc. Pain Doc does x-ray and MRI. And finds the disc’s at C3-4, 4-5, 5-6 herniated/bulging. This is in ’06. He is a big proponent of ADR and anti fusion. His recommendation is to try and wait till multi level ADR is approved or go out of country.

Spring of 07 while Becky is returning from walking the dogs she hit a patch of black ice and lands on her butt with her back at about a 45 degree angle to the ground. ER finds nothing after lumbar MRI. Everything is fine, well, normal anyway, till March when Becky has sudden onset of severe lower abdominal pain. The kind of severe where she is sobbing constantly. ER says they find nothing and sends her home. Next day Family doc gets her admitted and for 10 days perform every test known in an attempt to locate the cause. Found nothing. Pain Doc thinks it could be lower back. New MRI shows nothing, Discogram confirms L5-S1 is the culprit. He starts the process to get implant for pain control. It is now September ’08.

The process is slowly moving along and Becky’s pain is tolerable at about a 5-6 out of 10. Next procedure is whats called a functional capacity evaluation. This is where a physical therapy provider tests how long you can stand in one place doing gross motor skills, and a few other things standing and sitting. The drive to this facility was about an hour long and kicked her pain to a 6-7. Becky couldn’t complete the testing and they sent her home. The trip home only made things worse. Bad enough that she can’t stop sobbing. That night Doc says go to ER. By the time we got there Becky was incoherent. Started pain pump and Neuro surg called in.

Becky wound up having L5-S1 fusion on 9-11-08. 5 days in hosp and 2 weeks in rehab. She has had only minor reoccurrences of the lower abdominal pain but the surgical pain has been intense and she has developed Sciatic problems. Shooting pain down her legs, Butt pain and low back pain. Her pain Doc has been doing a great job trying to manage her pain. After rehab she was on Fentanyl patches 100mcg/hr and Dilaudid. He brought her down to 35mcg/hr Fentanyl and percocet. Lately though her neck has gotten to the point that we cannot wait any longer. She is back up to 50mcg/he Fentanyl and Dilaudid every 4 hrs. Shooting mostly down her right arm but sometimes down her left also, Migraines and “temple headaches”. We are waiting now to see a Neurosurgeon for her neck. He does perform ADF although Multilevel is still out. We are also starting the process to see Dr. B in Germany and looking into India also.

I’m sure many of you can empathize. Becky’s life is gone. She is a VERY outgoing extroverted lady. She needs lots of people contact and it disappeared with this back thing. She has been fighting depression and trying to grieve the loss. Her friends have stopped calling and visiting and she needs that contact with people she knows. Please keep her in your thoughts and prayers.

Any way that’s where we are.

Thanks, Wayne
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  #2  
Old 05-24-2010, 07:55 PM
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Harrison Harrison is offline
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Default Welcome...

Becky and Wayne,

Welcome to our community – you are now among friends that understand what happens when “things get tough.” That’s why we started this community six years ago – to help people battle their pain while figuring out their next steps.

Wayne, thanks for your eloquent summary. As you both know, multi-level ADR is a really big deal. One question for now: does Becky have a firm fibromyalgia diagnosis?

I’ll chime back into the topic in a few days; but in the meantime, I hope we can help Becky back on the road to wellness...

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  #3  
Old 05-24-2010, 08:13 PM
waynes waynes is offline
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Join Date: Jul 2008
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Thanks Harrison,
The only Diagnosis is from around 95 when Fibro was just coming into vogue. No confirmation since that time but there has been doubt from some doc's. Wether from non acceptance of the disease or the diagnosis its still up in the air. Much of the pain Becky has experienced could be from either Fibro or from the disks. Since the disk issue appeared we havent persued confirmation of the Fibro.


BTW. I ordered the DVD today. Cant wait to see it.

Wayne
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  #4  
Old 05-25-2010, 12:15 AM
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jss jss is offline
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waynes, what a terrible story. Three years of intractable and debilitating pain! Please offer my condolences to Becky, and I truly hope that ya'll get some relief SOON!

I had three months of intractable and debilitating pain, and was tethered to the couch before my double ADR. That's not near what ya'll have had to endure, but I do feel your pain.

I hope that ya'll are able to arrange a multilevel ADR instead of having to undergo fusion. I had two cervical fusions (2000 and 2002), and then two cervical ADRs (2009). While I had successful outcomes with both fusions, I was going to have to keep having them.

As ya'll are considering international options, I'll give you another one. My double ADR was in Barcelona, Spain with Dr Pablo Clavel of the Barcelona Spine Center. He implanted two Spinal Kinetics' M6's for 18565 euros (just under $23k at today's exchange rate).

I felt better upon waking up in recovery than I did when they put me to sleep. That was Nov 25, 2009. Since time I've run two half-marathons and one full marathon; and I feel great!

Whatever you and Becky do, I sincerely hope that your outcome is at least half as good as mine, because it gave me my life back.

Good luck, Jeff
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C4/5 - ACDF in 2000
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C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #5  
Old 05-25-2010, 10:42 AM
waynes waynes is offline
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Hi Jeff,
Thanks for the comments. It's good to hear about the success you have had with both the fusion and ADR. We typicall only hear about failure with fusions and not the successes. This causes us to lump all the fusions in the same bucket. I think the majority of fusions are successful but that doesnt mean it is the best option any more. 20 years ago it was the "Gold Standard" in treatment however the gold value has gone up and we have more options. It's a shame we have to travel out of the country to take advantage of them.
Unfortunately we have to accept the risks also. (insurance issues and international travel)
Becky's pain doc is doing a good job of helping her deal with the pain. If we can figure out the money side Multi level is the way we will go. Best estimate at this time for Dr. B will be around 70 to 80K including travel. So Spain is an option along with other countries.

Again thanks for your comments and support.

Wayne
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  #6  
Old 05-25-2010, 12:53 PM
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jss jss is offline
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Quote:
Originally Posted by waynes View Post
.... It's a shame we have to travel out of the country to take advantage of them.
Wayne, it's a crime that we have to travel out of the country. But that's how it is...

As ya'll are seriously looking at international options, I am familiar with two companies that hook people up with foreign medical providers; healthbase.com and planethospital.com (there are probably others too). You fill out online forms and they get back to you with a phone call and/or email. They can provide you with options with which you would have otherwise been unfamiliar. As you've possibly figured out, selecting the right country/doctor/device are all gargantuan tasks.

Good luck, Jeff
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C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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