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  #151  
Old 05-22-2015, 10:07 AM
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randolf randolf is offline
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finding a surgeon is a daunting task, i have contacted 4 different ones so far. all have there own favorite thing to do. i am in the same place with Dr. Pettine as Cynlite is with Dr. Zeegers. i have been waiting 6 weeks for a report. one hasn't even got back to me at all. others are as high pressure as a time share condo sales rep. since some people have considered and even gone overseas, if 2 people were considering the same doctor, has anybody considered doing a buddy system in traveling over seas?
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2007 mri revealed all but 2 discs of entire spine are either bulged, some torn, a few herniated and compressing foramenal nerves or chord c3-4 fusion. myelomalacia at 2 levels, facet arthropathy, spinal and foramenal stenosis, yadda, yadda...
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  #152  
Old 05-22-2015, 10:28 PM
Dema Dema is offline
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Hi Cynlite, I am in same waiting game for Dr. Zeegers' report, but I started the process a few weeks after you. And the recommendations from other surgeons range from "pain is in the brain, and surgery is not likely to help, more pain management" to 3-level ADR (C3-C6), and hoping Dr. Zeegers will help me determine what to do!
With all the background info Dr. Zeegers asked for and all the photos in his homework, I think it is worth waiting for his report and hoping it will help us decide on the procedure to help us to pain freedom!
__________________
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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  #153  
Old 05-25-2015, 09:37 AM
Karger Karger is offline
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i had to wait about a month for my second unbais opinion from Dr Zeegers too. I know the waiting can be frustrating, but it was well worth the wait.

I would go back to him again if i needed another surgery.
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  #154  
Old 05-25-2015, 09:55 AM
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Cynlite Cynlite is offline
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Quote:
Originally Posted by Karger View Post
i had to wait about a month for my second unbais opinion from Dr Zeegers too. I know the waiting can be frustrating, but it was well worth the wait.

I would go back to him again if i needed another surgery.
Thanks Karger. Today starts the beginning of the second month as the package was completed on the 25th of April. It's important because the opinions I've received so far are all different. I hope to get some answers to my questions this week.
__________________
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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  #155  
Old 05-25-2015, 03:09 PM
Cheryl0331 Cheryl0331 is offline
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Default now thta's a good idea

The Buddy system! You may have something there. It's a lot less scary to go with someone else that is having surgery as well. I found my phone consult with Dr. Zeegers frustrating. He has this delay in between thoughts and when he's speaking. I wondered if he was bored with talking to me. He called me promptly, but it was just a strange conversation. I had sent him a pain diagram and my patient history and he still wanted all of these forms filed out and sent back. Plus, I find it daunting when someone want me to spend nearly $1000 to even fine out if they are willing to treat me. Sorry, that was money that I could put towards surgery. Having said that; he is a world pioneer of ADR and I am truly thankful for him for that! He is an excellent surgeon; just seems like it takes so long to work with him. Truly; I waited to long before moving on this. I had no time to wait any further. Dr. Clavel's assessment was spot on and I am glad we went to him! It's hard to wait when you are in the most pain you have ever been. I can really wear down your spirit...
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #156  
Old 05-28-2015, 07:03 PM
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Cynlite Cynlite is offline
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Red face Dr. Clavel

I spoke to Dr. Clavel this morning. What a gracious man! I expected no less after reading so much about him here. I feel a little less freaked out about his diagnosis.

It was a very good conversation and I'm glad I spoke to him because he answered my questions and helped me to develop a plan of action. I want to work with my pain specialist to get some epidurals hoping to determine if my L3/L4 and/or T7/T8 are pain generators. Dr. Clavel is the only surgeon to address these problems even though they are on my MRIs! I want to get a few more x-rays done to rule out injuries to my shoulder and hips. I also want to see a doctor to rule out fibromyalgia. I don't think I have it but, I've never been evaluated for it. I also need to get the metal allergy test. It's very hard to understand where the pain is coming from when one has pain all over the flippin' place! Once I rule out these other things, I will have the information I need to move forward with my surgery plans. I'm pretty sure I'm looking at 3 cervical ADR's (C3/C4, C4/C5, C5/C6) although Dr. Bierstedt only recommended two. I just don't know if I want to tackle a lumbar fusion too! Apparently, my facet joints are shot at L3/L4 so, I can't do an ADR there...that is such a bummer! I doubt I'll tackle the thoracic issues and didn't really talk to the doctor about it. Wish I had in hindsight. I'll email him about it later.

I'm still waiting on Dr. Zeegers' report and want to know his diagnosis as well. Hopefully, he will confirm what Dr. Clavel thinks but, of course this is still a work in progress until I get the other tests. I feel like I'm finally seeing an end to this very difficult and long journey. Most likely it will be 2 - 3 months before a surgery date. I hate this hurry up and wait part but, it is what it is. I'll try to use the extra time to get another opinion and set up a U.S. based surgeon in case I need one. I do plan on buying the insurance so, that (God forbid) I can go back to Dr. Clavel if there are problems after the surgery. I hate to even think that way but, it's a risk that we all take.

I was able to record our Skype conversation and am glad I thought of that ahead of time because already I want to go back and review what he said about a few things. Even with taking notes, it's hard to remember everything! I did let him know I wanted to record the call and he gave me the okay to do that. In case anyone else wants to do this, you have to download a free program to do it because it's not part of Skype. The program I loaded brought along a couple of other programs that ended up screwing up my Chrome so I had to uninstall it completely. I'm trying to get it reconfigured again...what a hassle. Still glad I have the video though.

Also, I asked him about the Mobi-C compared to the M6-C. He said he used the Mobi-C 10 years ago but, doesn't want to use a device that is unconstrained. This is the part of the video I want to watch again. I can't remember the rest. I don't want to risk further damage to my facet joints so as long as I don't have issues with any of the metals in the M6-C, I think it's the way to go for me.

Last thought to share is that I did start using hormone creams over the last week (talked about in another thread I posted) and I think they are already helping me to feel better and have less pain. I hope this is not all in my head LOL but, I do feel a little better....I'll take it!
__________________
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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  #157  
Old 05-29-2015, 07:42 PM
bwink23 bwink23 is offline
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Quote:
Originally Posted by Cynlite View Post
I spoke to Dr. Clavel this morning. What a gracious man! I expected no less after reading so much about him here. I feel a little less freaked out about his diagnosis.

It was a very good conversation and I'm glad I spoke to him because he answered my questions and helped me to develop a plan of action. I want to work with my pain specialist to get some epidurals hoping to determine if my L3/L4 and/or T7/T8 are pain generators. Dr. Clavel is the only surgeon to address these problems even though they are on my MRIs! I want to get a few more x-rays done to rule out injuries to my shoulder and hips. I also want to see a doctor to rule out fibromyalgia. I don't think I have it but, I've never been evaluated for it. I also need to get the metal allergy test. It's very hard to understand where the pain is coming from when one has pain all over the flippin' place! Once I rule out these other things, I will have the information I need to move forward with my surgery plans. I'm pretty sure I'm looking at 3 cervical ADR's (C3/C4, C4/C5, C5/C6) although Dr. Bierstedt only recommended two. I just don't know if I want to tackle a lumbar fusion too! Apparently, my facet joints are shot at L3/L4 so, I can't do an ADR there...that is such a bummer! I doubt I'll tackle the thoracic issues and didn't really talk to the doctor about it. Wish I had in hindsight. I'll email him about it later.

I'm still waiting on Dr. Zeegers' report and want to know his diagnosis as well. Hopefully, he will confirm what Dr. Clavel thinks but, of course this is still a work in progress until I get the other tests. I feel like I'm finally seeing an end to this very difficult and long journey. Most likely it will be 2 - 3 months before a surgery date. I hate this hurry up and wait part but, it is what it is. I'll try to use the extra time to get another opinion and set up a U.S. based surgeon in case I need one. I do plan on buying the insurance so, that (God forbid) I can go back to Dr. Clavel if there are problems after the surgery. I hate to even think that way but, it's a risk that we all take.

I was able to record our Skype conversation and am glad I thought of that ahead of time because already I want to go back and review what he said about a few things. Even with taking notes, it's hard to remember everything! I did let him know I wanted to record the call and he gave me the okay to do that. In case anyone else wants to do this, you have to download a free program to do it because it's not part of Skype. The program I loaded brought along a couple of other programs that ended up screwing up my Chrome so I had to uninstall it completely. I'm trying to get it reconfigured again...what a hassle. Still glad I have the video though.

Also, I asked him about the Mobi-C compared to the M6-C. He said he used the Mobi-C 10 years ago but, doesn't want to use a device that is unconstrained. This is the part of the video I want to watch again. I can't remember the rest. I don't want to risk further damage to my facet joints so as long as I don't have issues with any of the metals in the M6-C, I think it's the way to go for me.

Last thought to share is that I did start using hormone creams over the last week (talked about in another thread I posted) and I think they are already helping me to feel better and have less pain. I hope this is not all in my head LOL but, I do feel a little better....I'll take it!


Isn't it amazing...Mobi-C is brand new here, and he says he used it 10 years ago. welcome to the United States....FDA approved
__________________
2013 - MRI and CT scan....DDD L4-S1
left side (where my pain is) interarticularis pars fracture/defect with Spondylolithesis L5 over S1 with 2MM anterior displacement

Feb. 2014 - Hybrid lumbar fusion(l5/S1), ADR(L4/L5)...2-level cervical ADR (C5/C6, C6/C7). Dr. Pablo Clavel of Quiron Hospital in Barcelona, Spain. All M6 implants (PEEK cage and plate from Medtronic at fusion level in lumbar.) SAME DAY OPERATION for both areas of the spine.
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  #158  
Old 05-29-2015, 09:25 PM
Cheryl0331 Cheryl0331 is offline
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Join Date: Dec 2010
Posts: 890
Default Cynlite

Sounds like you had a great enlightenment after speaking to Dr. Clavel. I am way better than before surgery! I trust his assessment totally! He wanted to address the c 6/7/t1 so that I would not have to have yet another surgery. Dr. Bierstedt was adamant only c 6/7. I will be grateful to God for leading to Clavel and we will forever love Spain... I still and will always believe that the M6 is the best choice for me!
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #159  
Old 05-29-2015, 11:26 PM
Dema Dema is offline
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Join Date: Jul 2013
Posts: 169
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Very promising discussion with Dr.Clavel, and hope Dr. Zeegers' report will confirm same, and you can begin your steps toward the pain freedom light at the end of your long journey. Thanks for sharing all the useful info. Best wishes Cynlite
__________________
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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  #160  
Old 05-31-2015, 01:46 PM
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Cynlite Cynlite is offline
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Posts: 666
Thumbs up The Power to Create

Thank you to everyone who has participated in my thread and on this Board! I know there are lots of others who don't because of pain, because of searching and because of the feeling of being alone in this struggle. I invite you to join the Board and the Forums anyway! It is the collective effort of the individuals, starting with Harrison, that has created this WHOLE board and it continues to grow and transform because people take the time to share. Sharing your thoughts, your research and your journey helps all of us to learn and pay it forward.

I've been very introspective in my grief. I am witness to people looking to a doctor to give them a magical pill to fix their health. If we take on that thought process, we surrender our power to someone else and we do this sometimes in desperation. I try to stay conscious and not be this way although if I'm perfectly honest, I have done this before. I know that I am the caretaker of my body and in each moment I make choices to support or not to support it's health. When I work with doctors, I am collecting information and making choices. Each doctor has a piece of information I need to help me find my course. They are not Gods and are not perfect so, I have to choose wisely. Sometimes I have asked the wrong doctor the wrong question and then I got information that in the long run hurt my health. I try to be cognizant that a surgeon does surgery so, he or she will recommend surgery. A pain specialist is not a a surgeon so, when I asked my pain specialist if I should have surgery and he said no, that was a bad question on my part and it steered me in the wrong direction for a while because it was what I wanted to hear! I had an OBGYN desperately try to give me a hysterectomy about six years ago. While I liked the doctor, I left her and still have all my parts. It just wasn't necessary but, that is how she made her living. Doctors are people I pay to help me but, in the end, I have to make the decision knowing that other factors besides my well being can come into play like profits and a surgeon wanting a patient on which to practice their craft.

Cheryl, I would say I felt validated by speaking to Dr. Clavel. What I found was a very gifted human being who is also a surgeon and I think a bit of an artist too. He participated in a conversation with me rather than tell me what I should do. He listened and together we plotted a course without making a final decision on my surgery. But, he reassured me that I'm almost there and that gave me some comfort because it's been a long and painful journey. I really want to have the surgery and hopefully, leave some of this pain behind me! Remember my post about how I think that the really great doctors/surgeons are humble human beings and have great support staff? Yes, he's one of them!

I know that MRIs and x-rays can show scary things and I also know that some of the things that look bad don't always generate pain. Our bodies age and that is a fact of life. I'm starting to accept that I'm aging too. I know from experience that after I have surgery, there is no turning back and there are consequences for that action both good and bad. I share this as I contemplate whether to do surgery or leave my lumbar and thoracic spine alone. I am certain that my neck needs to be fixed but, not so certain about the rest of my aging spine. I know that fusion is not the end of the world but, I'm not sure I want to sign up for the consequences just yet. I'm still trying to figure it out.

Dema, thank you for our positivity! I smile when I read your posts. We seem to be running in a parallel course. Hang in there. We will get through this and find our answers soon.

Bwink, I do think the FDA needs to be overhauled and rebuilt. It is supposed to protect us but, I think it holds us back medically and then once something is approved, the millions that were spent to get the approval get passed onto us. That would be fine if the treatment was not already tried in proved in other countries! I could go on and on....it's frustrating.

Karger, I hope Dr. Zeegers is worth the wait! It's now been five weeks that I have been waiting. Having said that, I waited four weeks for Dr. Clavel. There is a long line of people waiting to get opinions from the best. Sometimes we need to prompt them just to make sure we didn't get lost in the shuffle. Randolf, I think that Dr. Pettine is on the short list of really good surgeons so, he too is a busy guy. I hope you have your opinion now.
__________________
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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