Advice needed on cervical ADR decision

[Cynlite]

"I started suspecting they may be caused by trigger-points in the neck muscles referring pain into head.

This is so true! It's really hard to pin down what causes the headaches but the trigger points do have something to do with it some of the time. I just scheduled an appointment with my Pain Specialist to now jab me with needles in the Thoracic area of my back to try and release the spasms. I know from seeing a neuromuscular massage therapist in the past that there is a point in my mid-back that when she got it to release, she also got the headaches to go away temporarily. Sadly, fighting the muscle spasms is an ongoing war. I am hopeful that the ADR surgery will fix all the interrelated issues. Until then, I go through my check list of traction, working pressure points, hydration, needle work from pain specialist, deep breathing, and the radio frequency ablation of my facet joints and lastly drugs.

Did you move forward with the stem cell treatment?

Hope you are finding answers!

[Cynlite]

Another duplicate!

[Cynlite]

Weird! I waited over 10 minutes for my post to show up because it wasn't there. Now it is showing up as a duplicate. This is the deleted duplicate since I can't delete it!

[Cheryl0331]

Originally Posted by Throttlejockey

We too were biased against going to Europe. You would be crazy to not be! But at the end of the day we wanted to have someone with the professional edge and selected Dr. Clavel.

First of all, as a professional pilot, I can tell you that the riskiest pilots are the ones that know how to operate the airplane, but lack experience in its peculiarities and seasoning in the cockpit. We call these guys "High Mins" Captains - they are allowed to fly the line, but are not allowed to fly in challenging conditions. So when the weather is bad, the company substitutes a more experienced guy for the flight.

Like pilots, we found that many of the highly regarded US surgeons whose names are often tossed about on this forum are still "High Mins" surgeons. They can do the procedure well with exceptional outcomes. But if you exhibit a clinically challenging diagnosis, they will revert to recommend a fusion or hybrid just as Antifragile has experienced. Call it CYA or whatever, but it is really frustrating to get your hopes up, and then have them quickly dashed when they so NO and push for the fusion.

Our experience was that Dr. Clavel felt that he had a 95% chance of getting it done, but told us he would have the fusion device at the ready. We asked him why the US doctors didn't approach it the same way, and he suggested they likely didn't feel comfortable with de-compression at the C6/C7 due to the advanced stage of my wife's condition.

As for the Mobi-C vs M6, we preferred the constrained design of the M6 over the unconstrained design of the Mobi-C, but at the end of the day, the Mobi-C was OK for us and we were prepared to have the Mobi-C. However, since we could not find a US Surgeon who gave us any confidence they would do the procedure the Mobi-C was not an option. On the other hand, Dr. Clavel has a lot of experience with the M6. In addition, there have been over 32,000 of these devices implanted so far so it is not something new.

Finally while some get reimbursed by insurance (Congratulations! You're in the minority of the minority), most that require a multi-level do not. As one of the seven doctors we talked to here in the US said to us, "your insurance won't cover it, so why talk about something you can't have."

I believe that once the insurance issue is resolved, multi-level ADR will become more common, and the issues of experience and seasoning for US Surgeons will go away. Until then, this problem will persist.

Overall, so far, we believe the decision to go to Europe was the best decision we could make given the information we had at our disposal at that time. We are happy with Dr. Clavel and the professional staff in Barcelona, but only time will tell.

TJ

"Our experience was that Dr. Clavel felt that he had a 95% chance of getting it done, but told us he would have the fusion device at the ready. "

[Antifragile]

Looks like I may be getting the surgery in Germany after all. Does anyone recommend flying in at an earlier date to allow time to adjust for jet lag? If I'm having surgery on, say, the 10th, should I leave on the 7th or 6th to adjust? Germany is 6 hours ahead of me. I didn't k ow if 2 or 3 days was enough time.

[TPatti]

If you can I would recommend getting in at least 3 day before. I say this because it gives you a buffer if any problems arise with flight delays and a chance for you to get settled and rested before a major surgery. I planned on arriving 4 days before but my connection was in Chicago, is there any need for me to keep explaining I was happy to have the 3 days we ended up getting. My wife and I took the train to Cologne one day and saw the Cathedral, Lindt chocolate factory, spent some tome along the shore of the rivers, and had a very nice lunch.
If you would like to contact me about specifics such as things your supporting partner can do and evening places to go the last few days if able besides Medicos shoot me a PM.

[Cheryl0331]

Harrison,

I understand your concern for medical care outside the US. I have been an US Army dependent wife; and I have had surgery in Panama Central America and Germany. My care in Germany was excellent. My doctors were not English or American. May be they don’t need malpractice there because they do it right the first time. Can you sight anyone that has been paralyzed or died here from having seen either Bierstadt or Clavel?
You also forget; there are those of us here on this site that have prior fusion and need more than two levels done, so no option here in the US. I don’t want a Mobi-c that is going to cause more adjacent level stress. I need the most shock absorption I can get.
I recently had a US doctor want to put a Bryan under my fusion, remove my plate and screws, possibly takedown the fusion at my C 5/6 just to get to a bone spur, and said he would check the PEEK cage at C ¾ to see if it was loose from not having fused. WOW! Doctors here that are that aggressive may have need for malpractice because that surgery would be very risky!
Let us not forget also that doctors here only sell what they are trained to do, or will be paid for by the insurance companies. What happened to “the Patient Bill of Rights”? Why didn’t my US surgeon tell me that there were other options rather than fusion? I could have had a 2 level ADR back in 2008. Now I am sitting here with this domino affect……………………………….
So I will go to Germany or Spain. Thank you very much!

[Romakis]

Cheryl,

Well said. My previous US doctors NEVER mentioned ADR. They also NEVER educated me the sightest about DDD, until it got too late. I honstly believe some of them want you to get worse.

[Cheryl0331]

Originally Posted by Antifragile

Still not getting good communication with Germany. Waiting on hearing back from Malte again.

Dr. Clavel said it's ok to stay in Spain only 8 days after the surgery (potentially December 15th) and fly out on the 23rd to be back home for Christmas. I don't want to feel like I'm rushing it. How long did other cervical patients on here stay in Europe after the surgery? Can I drive?

Also, discussing the options of using bone wax or not. Apparently Dr. Clavel uses it, but Dr. Hamlyn and bierstedt do not. With my history of staph infections, Dr. Clavel said he may not use it. I'm afraid of him altering his normal procedure. But I'm wondering, are there other techniques that need to be done instead if he doesn't use it?

Very confused.

I have sent two email this poast week to Malte without reply and one to Kelli. I hear back from BCN rwithin 24 hours. Dr. Clavel gave the best assessment thus far. He caught something the other did not. It's more money, but my health and out come is worth it!

[Cheryl0331]

Hi Romakis, People like us only have one more shot to get this right!