Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

B

Bowser

Senior Member
Messages
141
hezza said:
He will look at them for free to let you know whether he will accept you as patient or not, he will not interpret the scans for free. From my experience. Videoconference if he accepts you is $300
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Thanks. I emailed him and he replied back within an hour! He said my MRI isn’t impressive enough by itself and that I’d need to report positive traction results to get in.

That scares me a little bit. What percentage of PTs out there have experience with doing traction safely and how do I pick one?
 
hezza

hezza

Messages
57
Bowser said:
Thanks. I emailed him and he replied back within an hour! He said my MRI isn’t impressive enough by itself and that I’d need to report positive traction results to get in.

That scares me a little bit. What percentage of PTs out there have experience with doing traction safely and how do I pick one?
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I wouldn’t have made the cut based on imaging alone either. If you can find an EDS literate PT, fantastic. Mine is not but he is focused on the spine. Did a very gentle heavenly traction the first visit, after that visit he read jeff’s story & seemed a little more confident about applying more lbs of pressure, the 2nd visit is when the lights went on for me. Are you in a position to pursue surgery if needed? If so, go for the manual traction!
 
V

Viktor11

Messages
25
mwmaxwell said:
So sorry to hear that. I am having surgery on February 3rd with Dr. Sunil Patel at The Medical University of South Carolina in Charleston.
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Hi!
I just read your post. This might be too soon for you to even look at this after surgery. But if you by chance are reading this and have the energy to answer it would mean a lot.
I saw Dr Patel last week and was diagnosed with CCI, AAI and EDS. He recommends surgery. I would like to know more about how he does the surgery. So if you feel like it, please could you please reply to me?
I hope you’re doing ok, considering everything!
 
C

Capecodder

Messages
34
I am curious about traction and EDS. I have EDS, and lots of problems with my neck. I was told my measurement was .9mm in flexion, which is by definition pathological. However, manual traction made my neck worse, as does bracing. I am Homebound by spasms throughout my scalenes and brachial plexus, as well as neck pain. Does the fact that bracing and traction made it worse mean anything?
 
mwmaxwell

mwmaxwell

Messages
25
Viktor11 said:
Hi!
I just read your post. This might be too soon for you to even look at this after surgery. But if you by chance are reading this and have the energy to answer it would mean a lot.
I saw Dr Patel last week and was diagnosed with CCI, AAI and EDS. He recommends surgery. I would like to know more about how he does the surgery. So if you feel like it, please could you please reply to me?
I hope you’re doing ok, considering everything!
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Hi. Yes I had CO-C3 fusion one week ago. Some post-op pain which is to be expected. Dr. P explained how he does the surgery but I don’t know if I can repeat it in detail. He uses the occipital bone which is good and strong to anchor the fusion and then fuses each side of the neck. He uses cadaver bone for the fusion. Takes about an hour. Does this help? If not you could send his team a message through My Chart for more info. Please feel free to contact me with more questions!
 
V

Viktor11

Messages
25
Thank you! I am so happy to read you are recovering well! Yes, pain is expected. When I saw Dr Patel last Friday he said jokingly that he avoids meeting the patient the first days after surgery because of the pain. But it sounds like a pretty quick surgery! 1 hr!
What was your diagnosis? Why did he do the fusion? Did you consider other surgeons? Did he do any invasive cervical traction before or during surgery?
Sorry, lots of questions!
 
mwmaxwell

mwmaxwell

Messages
25
Viktor11 said:
Thank you! I am so happy to read you are recovering well! Yes, pain is expected. When I saw Dr Patel last Friday he said jokingly that he avoids meeting the patient the first days after surgery because of the pain. But it sounds like a pretty quick surgery! 1 hr!
What was your diagnosis? Why did he do the fusion? Did you consider other surgeons? Did he do any invasive cervical traction before or during surgery?
Sorry, lots of questions!
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My diagnoses are ME/CFS/EDS/CCI, AAI, and TC. Dr. B didn’t accept me into his practice, Dr. Henderson doesn’t take Medicare. I did send my imaging to Dr. Gilete who confirmed the diagnosis of CCI/AAI. When I met Dr. Patel I knew he was the one for me. He doesn’t do invasive traction but I had a positive response to home traction. My CXA was very pathological at 125°. Quite a kink in my medulla. Based on my years of disability (18), my age (55), and the severity of my pathology that is why I decided to have surgery. I’m a PT and I work closely with a PT in Charleston who has EDS named Susan Chalela who treats lots of Dr. Patel’s patients.
 
V

Viktor11

Messages
25
mwmaxwell said:
My diagnoses are ME/CFS/EDS/CCI, AAI, and TC. Dr. B didn’t accept me into his practice, Dr. Henderson doesn’t take Medicare. I did send my imaging to Dr. Gilete who confirmed the diagnosis of CCI/AAI. When I met Dr. Patel I knew he was the one for me. He doesn’t do invasive traction but I had a positive response to home traction. My CXA was very pathological at 125°. Quite a kink in my medulla. Based on my years of disability (18), my age (55), and the severity of my pathology that is why I decided to have surgery. I’m a PT and I work closely with a PT in Charleston who has EDS named Susan Chalela who treats lots of Dr. Patel’s patients.
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Then we have the same diagnosis apart from TC. Yes, 125 in CXA is definitely pathological! I've been disabled for the same years as you, I am 48. I will have surgery too, but need to figure out where. After my appointment with Dr Patel we drove by Susan, by chance actually. I was recommended by Patel to get a hard collar fitted, and she was so kind and helpful. I wish she was closer to where I live so she could help me with PT as well.
Have you noticed any improvements in your symptoms yet, or is it too soon?
 
mwmaxwell

mwmaxwell

Messages
25
Viktor11 said:
Then we have the same diagnosis apart from TC. Yes, 125 in CXA is definitely pathological! I've been disabled for the same years as you, I am 48. I will have surgery too, but need to figure out where. After my appointment with Dr Patel we drove by Susan, by chance actually. I was recommended by Patel to get a hard collar fitted, and she was so kind and helpful. I wish she was closer to where I live so she could help me with PT as well.
Have you noticed any improvements in your symptoms yet, or is it too soon?
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Susan does remote video appointments. That’s what we mainly do! I notice improvements everyday. I was upright 6 hours yesterday which was amazing!
 
mwmaxwell

mwmaxwell

Messages
25
Viktor11 said:
Have you noticed any other improvements?
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My cognitive envelope has always been my largest if I could be supine for my POTS. But my deficits have included word finding, only being able to focus on one thing at the time, inability to listen to live television. The other night I was listening to music while dictating a note. That’s huge! And I can listen to live television with commercials!
 
V

Viktor11

Messages
25
Capecodder said:
I am curious about traction and EDS. I have EDS, and lots of problems with my neck. I was told my measurement was .9mm in flexion, which is by definition pathological. However, manual traction made my neck worse, as does bracing. I am Homebound by spasms throughout my scalenes and brachial plexus, as well as neck pain. Does the fact that bracing and traction made it worse mean anything?
Click to expand...

Did you have your collar fitted by a PT or similar?
 
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