Question: Dr. Bertagnoli

[Suzanne1234]

Hello. Does anyone know if there is a way to communicate with Dr. Bertagnoli without going through the local representative who vets the patients? Can you send a letter to the surgeon directly or schedule a consult directly with his office in Germany?

Thank you

[annapurna]

It's been quite a few years since we contacted Bertagnoli's office and, back then, the local rep was optional. Which was fortunate, as we weren't impressed with him.

On the other hand, we did contact another German surgeon recently. We signed up for a month's worth of Skype, US to Germany, for a few dollars and just woke up early one morning and called the office directly.

One thing: be very clear in your mind what you want and what that request might mean to them. It's very unlikely that they'll schedule you for a visit after just a phone call to the office. If the clinic does online consultations, you'd likely be able to get that. The more difficult it is for a non-technical, non-medical person to make sense of what you want and the harder it is for them to work with you during the phone call, the more likely it will be for them to turn you back over to the Americas rep to deal with.

[Suzanne1234]

Thank you. Perhaps I will try to contact the office in Germany directly. Maybe I should find someone who speaks German. Anyway. I will have to wait until my local doc thinks it is OK for me to have another CT. My last one was 8 months ago and usually surgeons like more recent ones....

Thanks again for your help

[annapurna]

If you can find someone who can speak German, even if you end up having to set up a three-way call on Skype, things will go better. I don't know if you have a college with German language studies nearby but "hire a starving college student translator" is always an option if one's available.

In general, I've found that you can get someone who speaks English to a degree about 75% of the time approaching a random person in Germany. The degree to which they're comfortable is high variable and can sometimes be little more than telling you that they're not really comfortable in English. 15-20 years ago ProSpine wasn't as much an international organization and the main reception definitely wasn't comfortable in English but, even then, could get someone to answer quick questions or make an appointment for a consult. I'd hope they'd be better now.

[Suzanne1234]

Thank you. I know someone German and will ask them.

I am trying to ascertain if there are success stories of multiple level ADR's by Dr. Bertagnoli but I cannot really get an idea. I know there are some miraculous type stories on the internet but they seem to be more like advertising. I have found some negative experiences but are there really many positive outcomes with 3 or 4 level ADR's? Are there people on this board who have had 3 or 4 level, cervical ADR's?

Thank you for your help

[annapurna]

We know some of the stories, at least, are real. Laura had one cervical ADR put in by Bertagnoli only to have another level degenerate and require a second ADE surgery by him. The scarring from the first surgery made the second much more difficult but it was successful. We have talked, over the years, with others who've had success with multiple levels. As to whether your odds of having success are good, that's a harder call.

I'd suggest this: as yourself what happened with your spine to lead you to need multiple levels. This isn't a blame game but if you can honestly say that whatever happened to damage the levels at first has been resolved and isn't going to cause problems for ADRs at those levels, you stand a better chance of success.

A motor vehicle accident, for instance, is a good reason to say your natural disks saw unnatural loading and there's no reason to think that would happen to ADRs; unless you're a professional race or stunt car driver. If your disks "just went bad," then it's a lot harder to be sure your ADRs aren't going to be challenged. ADRs are inherently less stable than healthy disks (better than badly degenerated disks, though), so if some mysterious situation took out your natural disks, you may not get good long-term life out of your ADRs unless you work on trying to improve stability and strength in your c-spine.

As for 3-4 levels, the Bertagnoli of 15 years ago was the person I'd get to do the surgeries. He certainly has the skill and experience and I simply don't follow his work closely enough now to know if he lost any fine touch with age. All I could say there is to try to get a phone consult. Even if they don't do "official phone consults," you might be able to get an answer to the questions, "If I presented at your clinic with a need to have 3-4 c-spine disks replaced, do you still perform such surgeries? If so, when, roughly was your last one? How many have you performed in the past 3-4 years?" With those questions, you're not asking him to remotely diagnose you but answer questions about what he's been doing the last little while. A remote diagnosis would still be nice, if you could get films to his clinic but I don't know what they do now.

Bertagnoli was also pretty good at using a mix of ADR and fusion for a hybrid approach for the high-count multiple level repairs. That might actually work better and not leave you with a hypermobile c-spine where you're unable to protect the ADRs when you're not able to actively fire muscles to protect them (sleeping, for instance). I've never heard anyone officially use these terms but I tend to think of dynamic stability (what you get when you're awake and holding your head stable with muscles, tendons, and ligaments) vs. passive stability (what you get when you're not firing muscles). Fusions have high levels of both, for obvious reasons and ADRs have low levels. If you're diligent, you can do something to improve your dynamic stability but your passive stability is pretty much what you get after your surgery. Again, these are Annapurna terms to make sense of what we've been told using our engineering thought processes but it made sense to us.

[Suzanne1234]

Thanks so much for your response. Not sure if you remember me, but I am the one who did c3c6 fusion despite no pain, no headaches, no symptoms whatsoever. After 28 yrs of torture with a serious and hellish autoimmune disease, some people began reporting remission after addressing instabiity in the cervical spine. I was an idiot. Those who benefitted had pain; I did not. In my utter desperation (I had been suicidal for many years), I just had it done, come what may. I did not get better and now am doing very poorly indeed, with new pain spreading down my back....in addition to my other illness. I consulted with 5 doctors. 3 said to do nothing. 1 said to fuse. another said to fuse the entire neck. I do not know how some of these doctors have kept their licenses.

Anyway, I am worse off and even more despondent now. My thought is to get better from the autoimmune disease (which I am doing now), bring down the inflammation, and then address my cervical spine, which is now ruined. But how?

C6-C7 is going. Thanks to my illness, I am the worse candidate for anything. Bone density is bad too. But the fusion reminds me daily of what an idiot I am. I don't know what I am supposed to do.

Sorry to ramble....

[annapurna]

Sorry, I realized who you were after I posted yesterday. I know we briefly talked about Caring Medical as a treatment option; as it happened we returned home from both getting treated Saturday morning (prolotherapy for Laura followed by 12 hours of travel to get home) so I wasn't at my sharpest when I posted.

Remembering that you not only need multiple levels but are looking for potential revisions from fusion to ADR, I would double down on my suggestion to try to call ProSpine to get their take on if they still do those kinds of surgeries and when the last time Bertagnoli performed anything similar. While spine surgery does require fine dexterity, it's not like you're asking him to do wind sprints and keep up with the twenty-year olds. If he's maintaining his surgical skills or has trained someone to follow him, you'd be in good hands; presuming he's still doing that kind of work.

[itsdevo]

Hello Suzanne1234!! When I read your post I felt so validated.
I submitted my records and imaging to Dr Bertagnoli via his American case mgr and received an assessment by Dr. B that I need surgery, and the assessment said that Dr. B's scheduler would contact me. I was so excited and relieved..... but.... That was in December. I have not been able to get anywhere with Dr B's american liaison and I am considering taking a german class to Dr. B's office directly. If you, or ANYONE in this thread has any ideas as to how I can contact Dr B's office directly, or if anyone here has any idea as to how to work with his case manager to move things along I would love to hear it. The case mgr for Dr RitterLang has been wonderful but I would rather see Dr. Bertagnoli.

Another idea I've been working on is trying to find a surgeon that has the same reputation as Dr Bertagnoli, given that Dr B's case mgr is a brick wall.

Originally Posted by Suzanne1234

Hello. Does anyone know if there is a way to communicate with Dr. Bertagnoli without going through the local representative who vets the patients? Can you send a letter to the surgeon directly or schedule a consult directly with his office in Germany?

Thank you

[itsdevo]

Originally Posted by Suzanne1234

Thank you. I know someone German and will ask them.

Suzanne1234, were you able to get ahold of Dr B's office? I am literally going through the same thing you were just one month ago. I would love to know if you were able to get an appointment. I plan on waiting two more weeks (each with a continued weekly reminder email and phone call to the liaison guy) and if still nothing then I will call ProSpine myself in February. I will also send you a PM if I can figure out how.