Using Entire Savings To Go Abroad: Need Advice

[Renee771]

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.

[scoop302]

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.

[jss]

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!

[drewrad]

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.

[Dema]

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

[Renee771]

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.

[Renee771]

Thank you very much

[Renee771]

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.

[Cynlite]

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.

[Stonewall_Boris]

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.

[DrewDotNet]

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.

Whoever you get an evaluation from, make sure they understand this. With these symptoms, you need to go straight to the front of the line.

[Renee771]

Hi, Cynlite: Yes. I am on narcotics. I do have a lumbar mri scan and it does show that I have an issue there. I do have health insurance, two kinds.
I got into a neurosurgeon 2 weeks ago, and he scheduled surgery immediately after seeing my cervical MRI. It's been really, really bad for a very long time. BUT, nobody would help me....Nobody. I left his office in tears that someone was nice to me, showed me where the problems were, let me ask questions, AND he answered them, AND he treated me with respect.....AND he was going to do surgery, and the Mobi-C at C4-6. Surgery was Monday. The pain was bad, bad, bad but that's ok if it gives me my life back (pain like mine is to be expected because I was on narcotics for so long, and injured for so long).
Thank you!

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.

[Renee771]

Thank you very much for commenting, and caring.
I had an appointment with a neurosurgeon proficient in the Mobi-C implant. He took one look at MRI report and scheduled surgery that day. I had surgery this past Monday. Doing pretty good, thanks.
I didn't tell him about the bowl or bladder issues, because he was so concerned about paralysis, and he treated me such respect, kindness and caring that I forgot!! lol I haven't had a surgeon even SHOW me the MRI pictures, or let me ask questions, nothing. And, for him to have been as kind as he was. I felt so---I don't have an adjective for how I felt. I was in tears when I left his office--giddy as school girl while still in his exam room. I was so excited, and just amazed someone was being nice to me. I was on cloud 9 on the drive home. His entire staff was terrific.
Thank you very much.

Whoever you get an evaluation from, make sure they understand this. With these symptoms, you need to go straight to the front of the line.

[Renee771]

Surgery was scheduled immediately after I saw a neurosurgeon proficient in the Mobi-C technology. The only money I had spend was on a driver, and hotel rooms for us night before surgery.

I am not in as much danger, and chances are quite likely I will not be in nearly as much pain as I was.
Thanks a bunch for caring to comment.
I have been absolutely desperate, and scared to death, for a few years now.

Thanks.


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.

[Renee771]

I kept going, and found a surgeon about 4 hours from here proficient in the Mobi-C. He scheduled surgery immediately.
He said I was a good candidate for the surgery. I was worried I wouldn't be either.
Surgery was on 3/30. Was released the next day.
Thanks a bunch.


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

[Renee771]

Thank you for your advice. I had those concerns myself. I am very glad to share that I found a neurosurgeon that scheduled surgery immediately after seeing my MRI (it was *dangerous* mess, alright). I had surgery on 3/30.
I still have some more issues--Mobi-C only good for two levels as of right now.
It's all a start.
Now--My lower back.

Smiles
Thanks again

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!

[Cynlite]

Congratulations on your surgery Renee! I'm glad everything eventually worked out well for you and that your insurance company stepped up to the plate. Sometimes it is the insurance company's fault and sometimes it is the doctor's office fault. I know the communication breakdown often drives me crazy! Navigating through our healthcare system is a challenge for all of us. Sadly, it can sometimes be detrimental to one's health and I'm so sorry you experienced this kind of failure. Thank goodness it's behind you now and you have a good surgeon in your corner. Wishing you a speedy recovery.

P.S. If you continue to have bladder and bowel trouble, I highly recommend you speak to your doctor or his nurse about it because it can turn into something serious.

[jss]

Renee,

Congratulations on making to the other side and on finding a US surgeon that you like and trusted. I trust that a week out of cervical surgery that you're already feeling better than before surgery?

Please update us when you're able; and good luck!

[Cheryl0331]

similar to JSS, I too have fusion at 4/5/6 peek cage at 3/4, which I wouldn't have done that one! thankfully my facet are in good shape going to Clavel for adr c6/7/t1 early may. I feel I have no choice even with the concerns post op back here. they are only giving me two options here: more fusion or do nothing either of which I'm screwed! prayers are welcomed. I feel that I have waiting to long, symptoms are so bad, and we don't leave for four weeks! we have to wire at least 65% of our money today. taking that plunge is :censor:scary!!!

[Dema]

Congratulations Renee, that's wonderful news, finding a surgeon you like & trust and getting the surgery done so quick. Wishing you full & speedy recovery, and look forward to your future posts and love to know your symptoms pre & post surgery!
Dema & Raouf

[ccny]

Hi, Going over seas for spinal surgery is a big deal. I'm also considering going to Germany but have trepidation regarding the financial cost. I will have to borrow money. What if disc replacement causes my problems to worsen? There is very little information regarding long term results. Of the longer term results I've read about it doesn't sound promising enough that I'd feel confident about it just yet. Though, I haven't closed my mind to it either. During my research, I recently came across a couple of articles which mention Dr. Charles Rosen. He is a U.S. orthopedic spine surgeon at University of California, Irvine, is considered to be in high standing and has a special interest in treating patients who have had failed disc replacement surgery. According to what I read, he has done quite a few revisions on patients who had disc replacement done overseas who ended up with failed surgeries and complications. I think that Doctor Rosen is an important contact to know.

[randolf]

i'm in the same place as you, i just sent my newest mri and their data sheet to Dr. Clavel in Spain:clap: i am still considering Dr. Beirstedt in Germany, he is one of the first spine surgeons to use the Premia Tops facet replacement system. which really cool if that is what you need. just keep doing as much research as you can and when it comes to your spine, i say go with your gut:beer:

[ccny]

Hello Renee,

Here's an idea to get your actual radiology images.

Call the medical center that took them and ask them if they have the ability to send you the actual images as jpg's through their patient portal. If so, you should be able to save these images to your computer and email them out to anyone you choose.
If they cannot do this for you, what I suggest is the following.
Register with Dr. Bertagnoli's site and send your medical reports and images to them for assessment. Ask them to please send your radiology images so you can view them as well when they send a response from the doctor as to what treatment plan he recommends. You are not obligated to go forward with that plan if you don't want to, but you will have your images, be able to view them and will be able to send them anywhere else you want.

[Harrison]

Everyone,

This topic was started in January of this year. Renee, are you still visiting this forum and topic? Hope all is well.