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  #1  
Old 01-25-2015, 01:54 AM
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Renee771 Renee771 is offline
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Question Using Entire Savings To Go Abroad: Need Advice

I have been denied surgery multiple times for bull**** reasons. I am in desperate need of surgery. I have been told how serious my situation is (possibly why I was denied. I do not believe so), and I can not take this constant rejection while I continue to get worse.
I am so unsure of whom to go to.
I was told I would need a three-level disc replacement. I was quoted 42G's for a 2-level with Dr. Ritter-Lang but have heard so many nightmares about him. I just read something quite disturbing about Dr. Bergatolini (sp?). Highly disturbing.
I have the discs of my MRI's but I do not know how to get the images on my PC and send to someone. The programs I have looked at for this purpose are all quite expensive. Any suggestions?

I have such significant and multiple issues (but I can't get anyone to give me a detailed diagnosis or prognosis...Very frustrating) and all I know is what I had to learn myself from the MRI reports, and few things I was told over the phone by docs that I sent my records to. They all said the smallest of accidents would be detrimental. I don't know why not one surgeon I saw last year would tell me. My pain doc is a D.O. and said the same thing. Told me to wear my soft collar while I sleep and drive. Said I would need surgery from the back of my neck too, so I am making the deduction that he is referring to a laminectomy of some kind because of the stenosis. He won't tell me anymore, just to get to a surgeon asap.
I am opposed and have waited so damn long for disc implants. So I have decided to use the only savings I have to go to someone who has been doing this for a long, long time and is proficient and skilled not just with disc implants but the other issues I have going on as well.

Any advice is appreciated. The pain is unbelievable. The weakness is my arms so significant, and my legs. My bowls are barely functioning, bladder is causing problems.

I can't fight until I am fixed. I can't protect myself, and my circumstances are not good.
I am begging for help.
Please, please, please help me.
__________________
Mild bilateral facet hypertrophy C2-C6 and with severe posterior osteophyte complex from C2-3/C5-6. Herniations at C3 to C5-6 with severe bilataral foramimal and canal stenosis at C4-5/C5-6 contacting cord. SURGEON REPORT: Moderate to severe cord compression C4-5/C5-6. Flattening cord at C4-5 Severe narrowing of the C5 nerve root. Cord is compressed, forced against lamina. C4-5/C5-6 worst. ADR suggested at C3-4, C4-5 and C5-6 Associated Diagnoses: Brachial Neuritis
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  #2  
Old 01-25-2015, 03:09 AM
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scoop302 scoop302 is offline
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Hi and welcome. Sorry to hear you are in such pain, both physically and mentally. I went to Spain to Dr. Clavel. I think he is the best and would not hesitate to go back or tell someone to go to him.
As far as getting your images to him, all you need to do is get dropbox, which is free, load the disk into your PC, and dropbox should pop up a window asking you if you want to import the images. Import all the images and you can send and email to Dr. Clavels office inviting them to see the images. They will be able to only download the images you have selected to send, not your whole dropbox account. This way, if you get more images, you can only invite to see those. It is pretty easy, just search for dropbox on the web. You should be able to see the images on any PC, as most of the imaging places use PC based equipment. I have been able to read my images from three different places on PC's running XP and 7. On my mac, I can see them after they are downloaded into dropbox, they will not run on my mac's unless I run a program, which there are two or three, all free. Hope this helps.
__________________
1979 car accident: rear ended
1980 ACDF C4-5
4/8/11 stopped, hit again
3 epidurals, PT, 2 MRI's,etc.
scheduled 3 times for C5-6, 6-7 fusion,
plus laminectomy at C3-4, and C 7, advised to do Bilateral lamino-foraminotomy C5-6, C6-7,a Percutaneous Discectomy L4 -L5
7/14 RFA on L3 to L5 (awake, local only)
C5-6,6-7 M-6 ADR with Dr. Clavel 9/17/14,
12/7/15 RFA L2-S1, Facet injections C2-7
6/3/16 RFA L2-S1, epidural L4,5, 8/26/16 RFA C1-7
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  #3  
Old 01-25-2015, 10:31 AM
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jss jss is offline
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Renee,

Sincerest condolences and welcome.

While I am a huge proponent of European ADR surgeries, you should know that they may not be appropriate for everyone. If your case is one that has a high incidence of excellent outcomes and a low incidence of complications and revision surgeries in the next several years, then you are a poster child for a foreign ADR surgery. If however you ... are "a mess", and will require extensive follow up and/or multiple surgeries, then there are significant problems with a foreign surgery when you need further surgery after returning home. Transatlantic communication and time zone differences aside, a great many US doctors will refuse to treat or even evaluate you. For subsequent care you will not get the US doctor of your choice, but rather the first one that is willing to see you, or even be required to borrow money to back to the European surgeon. If you are going to require long term follow up care and don't have money for much/most/all of that care in Europe, that is not a good formula.

If you condition is as extensive as it sounds, I would strongly encourage you to gain the support of the US doctor of your choice before traveling to Europe.

Good luck!
__________________
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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  #4  
Old 01-26-2015, 05:51 PM
drewrad drewrad is offline
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Is neck pain worse than lumbar or vice versa? If bowel problems are creeping up I am surprised lumbar is not more central to this discussion with neuros. Perhaps both need to get knocked out in one surgery.

It's doable but may be more expensive. The key is to not do too much and not do too little. You want the goldilocks that is just right, and everyone is different.
__________________
Weightlifter since 12 years old, now mid-40's and figuring out this wasn't such a good idea.

Chronic back pain started in 2010 while shrugging weights that a 40 yr. old shouldn't even try.

MRI in 2012 showing L4/L5, L5/S1 herniations and L2/L3 bulge.

L5/S1 taking on new shape, chronic sciatica, etc.

DEXA bone scan performed 5/7/14 showing mild osteopenia.

Surgery performed July 9th, 2014, Dr Clavel, hybrid three level lumbar.
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  #5  
Old 01-28-2015, 02:49 AM
Dema Dema is offline
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Hi Renee, sorry to hear about your suffering, and pray relief will be near!
I think Jeff makes a good point about a local surgeon, for follow-up care, but also depending on the condition of your discs and vertebrae, you may not be a good candidate for ADR.
If you are having problems with bladder & bowl movement, this could indicate pressure on the spinal cord, and you will need attention soon. I am not sure about your location, but from the surgeons I contacted in the US I liked Dr. Lauryssen (Los Angeles) & Dr. Wohns (Seattle).
Wishing you the best,
Dema/Raouf
__________________
7/2007 Whiplash injury
11/2009 Cervical disc herniation C3-C6 (C5-C6 worse)
2010-2013 Conservative treatments (drugs, PT, epidurals, prolotherapy, acupuncture...etc)
, little effect on pain
Considering surgery (typical questions, which type & which surgeon!)
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  #6  
Old 02-02-2015, 05:21 AM
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Renee771 Renee771 is offline
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Default Helps A Lot

Quote:
Originally Posted by scoop302 View Post
Hi and welcome. Sorry to hear you are in such pain, both physically and mentally. I went to Spain to Dr. Clavel. I think he is the best and would not hesitate to go back or tell someone to go to him.
As far as getting your images to him, all you need to do is get dropbox, which is free, load the disk into your PC, and dropbox should pop up a window asking you if you want to import the images. Import all the images and you can send and email to Dr. Clavels office inviting them to see the images. They will be able to only download the images you have selected to send, not your whole dropbox account. This way, if you get more images, you can only invite to see those. It is pretty easy, just search for dropbox on the web. You should be able to see the images on any PC, as most of the imaging places use PC based equipment. I have been able to read my images from three different places on PC's running XP and 7. On my mac, I can see them after they are downloaded into dropbox, they will not run on my mac's unless I run a program, which there are two or three, all free. Hope this helps.
This helps quite a bit.
Thank you very much.
__________________
Mild bilateral facet hypertrophy C2-C6 and with severe posterior osteophyte complex from C2-3/C5-6. Herniations at C3 to C5-6 with severe bilataral foramimal and canal stenosis at C4-5/C5-6 contacting cord. SURGEON REPORT: Moderate to severe cord compression C4-5/C5-6. Flattening cord at C4-5 Severe narrowing of the C5 nerve root. Cord is compressed, forced against lamina. C4-5/C5-6 worst. ADR suggested at C3-4, C4-5 and C5-6 Associated Diagnoses: Brachial Neuritis
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  #7  
Old 02-02-2015, 05:27 AM
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Renee771 Renee771 is offline
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Thank you very much
__________________
Mild bilateral facet hypertrophy C2-C6 and with severe posterior osteophyte complex from C2-3/C5-6. Herniations at C3 to C5-6 with severe bilataral foramimal and canal stenosis at C4-5/C5-6 contacting cord. SURGEON REPORT: Moderate to severe cord compression C4-5/C5-6. Flattening cord at C4-5 Severe narrowing of the C5 nerve root. Cord is compressed, forced against lamina. C4-5/C5-6 worst. ADR suggested at C3-4, C4-5 and C5-6 Associated Diagnoses: Brachial Neuritis
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  #8  
Old 02-02-2015, 06:01 AM
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Renee771 Renee771 is offline
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Default Willing to Move Over-Seas

Thank you all very much for your input. I appreciate it. I am so, so, so lost. I don't mind moving over-seas to be near an excellent doctor.
__________________
Mild bilateral facet hypertrophy C2-C6 and with severe posterior osteophyte complex from C2-3/C5-6. Herniations at C3 to C5-6 with severe bilataral foramimal and canal stenosis at C4-5/C5-6 contacting cord. SURGEON REPORT: Moderate to severe cord compression C4-5/C5-6. Flattening cord at C4-5 Severe narrowing of the C5 nerve root. Cord is compressed, forced against lamina. C4-5/C5-6 worst. ADR suggested at C3-4, C4-5 and C5-6 Associated Diagnoses: Brachial Neuritis
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  #9  
Old 03-30-2015, 11:31 PM
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Cynlite Cynlite is offline
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Renee, if you are still around I have a few questions. Are you taking narcotics or pain medication? I'm assuming you are so the next question is are you doing anything to manage the constipation from them? If yes then the next place to look would be your lumbar spine for bowel problems. If you can't get the insurance company to work with you then perhaps you need to call a lawyer to help you. If you can handle the hours of phone calls it takes to get the insurance company to cooperate, then you need to insist on speaking to supervisors only. The low level people will give you different answers to the same question on the same day. You will need to appeal and push! I sure hope you are doing better.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #10  
Old 03-31-2015, 12:55 AM
Stonewall_Boris Stonewall_Boris is offline
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Hi Renee,

I would advise not to spend your entire savings going abroad for surgery. Quite simply put there are no guarantees. I don't visit this site often but I felt a need to repy to your message.
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