Shipping off medical reports today!

[Jstuckey]

Sending all of my medical reports on CD to Dr Bertagnoli, Clavel, Pimenta, and Boeree today. Wish me luck on asking informed questions, to come to the most successful treatment decision possible in the next few months. This site has been most helpful in being an informed patient! I don't believe my local surgeon took the time to be aware of my possible contraindications to ADR (scoliosis and mild-mod facet degeneration), so quite possibly the insurance denials have saved me from a procedure that might not be right for me afterall. Prior to my insurance denial, I didn't take the time to research. Now I know to ask about those contraindications, as well as many other subjects regarding my dream for a successful outcome. Still not-so-secretly hoping for new discs vs. fusion, which will be sans insurance if that is the route I take, but the focus right now is to hear about options and opinions from across the globe, and ask many, many intelligent, informed questions. So thank you to everyone for sharing your stories - both good and bad. I have learned much from you.

[Harrison]

JS,

Thanks for sharing your progress. In terms of some of the outcomes, did you happen to read Liz's story? She was so kind and eloquent to share her unfortunately disastrous outcome...she had ADR with scoliosis...it's in the outcome forum.

[Jstuckey]

Thanks.... I hadn't read that one. I hope she is doing well. It amazes me that for all the money that is spent on MRIs and Xrays and etc.etc.etc. at the surgeon's request, that I have to be the one to know to bring up the contraindications of "Did you see that I have scoliosis?" and "What about my mild facet joint degeneration at L4-5, and moderate at L5-S1?". But, that is the case, and I'm thankful to know to ask those questions now. I'm even in the medical field and didn't know what to highlight, so this website is truly a service to people who wouldn't know where to begin, and even those of us that should know at least a little!

[jss]

Joey Sue,

Good luck! And please keep us posted.

Jeff

[Harrison]

JS, here is Liz's post. Liz, I hope you are better these days!

[Jstuckey]

For the people early in this process, like me, here is some info on my research progress: Within days of sending my medical reports (only $12 to ship 4 separate packages of CD's with a cover letter - 2 to US addresses, 2 international), I started to get confirmations from the middle man that the reports were received, and the doctor would be looking at them.

Took considerably longer to reach Dr Luiz Pimenta in Brazil, but all 4 places responded. Dr Clavel responded first, that he'd seen my reports and offered a treatment plan - 2 M6s at L4-5, L5S1 ($40K) including 5 days in the hospital and 7 days in a hotel afterward, therapy, etc. He answered all of my medical questions quickly - within 2 days. I also have a phone consultation set up with Dr (Mr.) Nick Boeree (I feel uncomfortable calling him "mister" - but apparently that is culturally appropriate in the UK?) this weekend. 250 pounds ($391 US dollars) paid via credit card - easily accomplished with timely emails. I am most excited about this transaction, and feel it will be useful in my investigations with other physicians. It really is no different than a consultation with a local ortho doc who is looking at your scans and reports and talking with you about options in his office. The good difference is, I actually am getting a 1/2 hour, vs. 5-10 minutes. (The bad difference is no insurance vs. insurance, of course). I invited my family physician to listen in / chime in on the conversation as well as my husband. There are not many ADR patients in the area that I live, so I thought my family doc may benefit from the conversation (and have some background for potential follow-up issues).

In case you were wondering how I came up with these 4 physicians, it was overwhelmingly from this site..... reading, reading, reading people's experiences. I leaned toward similar lumbar experiences, and looked for glowing recommendations from those that have been through it. Contact information is easily found once you get a good feeling about a doctor, by searching the names on the web.

Hopefully this is helpful for anyone wondering what to do next.

[jss]

Joey Sue,

I have only ever heard of good outcomes from Dr Pimenta, but I have never heard anyone compare the price in Brazil with England, Germany or Spain. How does the Brazilian price compare?

Did Dr's Clavel or Pimenta address your pre-existing issue of mild scoliosis? If it didn't come up, I would encourage you to raise it with Dr Boeree this weekend, and quiz him thoroughly. Asking questions such as common complications? The number of ADR's he's done in the scoliosis afflicted? Would he have ADR, fusion or something else if he had your level of scoliosis? Etc... I have never read of scoliosis being a contraindication for ADR, and I don't know why. With a surgeon with the preeminence of Dr Zigler actually referring patients to Dr Boeree, I strongly suspect that this weekend that you will be in the company of one whom is among "the best of the best", and would encourage you to use that expertise to its fullest.

Please let us know how the consultation goes.

Good luck!

Jeff

[Harrison]

Scoli is serious stuff: pls read Liz' post if you have not.

[Jstuckey]

Thanks Harrison, I did read Liz's post and hope she is in better shape these days. It was helpful to know to discuss that topic at length, prior to any decisions.
Just a few hours ago, I spoke with Nick Boeree (The Spine Clinic, Southhampton, UK) today and was very impressed. The investment made for that consultation was well worth it (about $391). He had obviously studied my reports thoroughly prior to calling, and after discussing many details at length with me (together with my husband and my family physician, who was kind enough to sit in on the consultation phone call as well), Dr. Boeree considered my scoliosis, degree of curvature, and the angles/areas affected to be mild enough to not be a contraindication to his eventual recommendation at the end of the conversation. I say it that way because I really felt no pressure for a particular pre-determined surgery, and he really didn't seem to have a definate recommendation until well into the conversation. For anyone reading this... know as much as you can about your own reports. I followed along with his train of thought without any problem, and me being knowledgeable with the details like, "My discogram was negative at L3-4", helped contibute to the decision making process. We talked a lot about specific symptoms (pathways of pain) to try to isolate the biggest culprets. Having my CT scan reports right there in front of me was helpful. So after much discussion:
His primary recommendation is a fusion at L5-S1 since I have such advanced deterioration of the disc, and moderate degeneration at the facets at that level, with an M6 above that at L4-5. With some deterioration starting at L3-4 as well, he said it would be an option to also do a 2nd level M6 there as well, but thought that might be overkill at this point. Likely it will need treatment in a few years, but he's thinking that the improved position and motion below it will preserve the L3-4 a little longer than the stress I'm currently creating. No significant symptoms are being generated there, so I think I'll save that one for down the road. Who knows what will be happening in the medical (AND INSURANCE) world by then.

The costs for the several different options (1 level ADR with fusion or 2 level ADR with fusion) discussed were very comparable to Dr. Clavel's recommendation of 2 level M6s. The Spine Clinic doesn't include the housing cost once you're out of the hospital, like Dr Clavel's quote did, but I have already found a house to rent within a few miles of the Nuffield hospital for about $500 per week, so when you are talking that much money ($32 - $40K), what's another $1000 to rent a house.
Very, very impressed with Nick Boeree, and am having a hard time believing that speaking to anyone else via email will impress me more!
Still waiting on personal responses from Bertagnoli and Pimenta though, before a final decision, but honestly think there's a trip to England in the spring in my future.

Next project.... any good links to finding, planting, and caring for a money bearing tree? Finding a long lost rich uncle? Winning lottery ticket?

[jss]

Joey Sue,

Wow. That all sounds very positive! Especially about mild scoliosis not being a problem. It is so important to have confidence in your doctor, and I'm so glad that you do. Of course with everything I've heard about Dr Boeree, especially that Dr Zigler occasionally refers patients to him, I can't imagine anyone not having that confidence. This is all such good news that I'm sitting here with an ear to ear smile!

Here's hoping that Dr's Bertagnoli and Pimenta come back with surgical prescriptions very similar or even identical to the one that you've just received.

Please continue to keep us posted, and good luck!

Jeff