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Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 83 76.1%

  • Negative

    Votes: 26 23.9%
  • Total voters
    109
H

HansG

Messages
57
Location
Germany
@Julia_S I'm so glad for your remarkable outcome!

I've been in FFM a month ago. I was happy after noticing the Dr. is familiar with Dr. Gilete somehow. Now i know why. :) He just mentioned that Dr. Gilete often criticizes that the positions are not in full flexion and extension.

He was not trying to hold me from this. So maybe he already started to thinking about.
 
H

HansG

Messages
57
Location
Germany
When you see him, you may ask him, whether he can do some of the measurements in future? Maybe that helps someone with communication to GP, insurance or something. He doesnt need to provide a diagnosis for this.
 
Josch2306

Josch2306

Messages
11
Julia_S said:
@Josch2306 I did the upright mri in FFM. I did get in touch with Dr. Giletes assistant first though to get exact instructions for the imaging. To me that is essential because not everyone who does these knows exactly what’s important; except for Medserena London and I was too sick to travel there.
Regarding the doc- he did not exactly believe in the plan as such. He did not see my CCI and AAI. But he understood how I have zero qol and that I was in a desperate situation. And he did an effort to google Dr. Gilete and find out what an absolute expert in his field he is.
I will meet this doc (yes, neurosurgeon) middle of August and talk to him about my outcome and how I believe that there are more people like me that need this chance in Germany. We‘ll see how that goes. I will keep you posted if you like.
Click to expand...

Would be great if you could keep me updtaed !!
 
Daffodil

Daffodil

Senior Member
Messages
5,875
hi all. is julia another successful cfs/cervical surgery case? i am not able to read the thread at present.

re: regenexx. i had my treatment wednesday. they always treat the ligaments they can reach from the back of the neck first. then, if that doesnt work, you go back for the PICL procedure, which targets the alar and tranverse ligaments through the mouth. the PICL procedure is done only in colorado.
 
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S

suevu

Senior Member
Messages
170
Daffodil said:
oh hehehe bless you!!!!!!!

i did stem cells cuz cannot afford surgery. lets see what happens...
Click to expand...

Can you please reply in the PRP thread I opened?

im interested in alterantive treatments that do not involve surgery, not just for a matter of money but for the dangers it invovles and then being unable to move your head.
 
Daffodil

Daffodil

Senior Member
Messages
5,875
suevu said:
Can you please reply in the PRP thread I opened?

im interested in alterantive treatments that do not involve surgery, not just for a matter of money but for the dangers it invovles and then being unable to move your head.
Click to expand...
please can you link me? i am not feeling too well to find it
 
B

bombsh3ll

Senior Member
Messages
287
@Julia_S I just read this and am thrilled at how things have gone for you, especially as I too am hoping to have this surgery just very scared and not in a financial position to do it just yet.

Can I please ask about orthostatic intolerance, which is my most disabling symptom (barely able to stand a minute without passing out, also constantly lightheaded sitting up). Did you have this and did it improve?

What I am also worried about is if it doesn't improve & I am still fainting after the fusion, that I will damage it.

B xxx
 
B

bombsh3ll

Senior Member
Messages
287
Julia_S said:
Hi @bombsh3ll I had pots and dysautonomia and both was gone after surgery. They say it might come back for an on and off phase for a while but as of now, day 19 after surgery that has not happened.
All the best for you x
Click to expand...

Thanks that is great to hear! I am both excited and nervous in equal measure. It is such a massive gamble to pay all that money and lose all movement in my neck if it doesn't work, but without trying I will never know.

I think for me it is less clear as my neck radiology really doesn't look so bad and I never had any neck problems prior.

Did Dr Gilete give or offer you a halo trial at all before the surgery to decide if it would help or not?

B xxx
 
B

bombsh3ll

Senior Member
Messages
287
@Julia_S thanks, that is helpful to know. I brought it up when I was there & he said it wasn't his usual practice but I could try it. Now, maybe I think I wouldn't, due to cost, possible further damage if I didn't have the surgery, & possibility of missing out on a beneficial treatment if I wasn't sure with the halo.

It just seemed so clear cut with Jeff & Jen, they got invasive traction & had definite benefit. I wonder if he offers the pulley system like Jen had, but then again I don't think I could cope with that if I were awake, done over many hours.

I am now waiting for a further skype appointment with Dr G now that I have my venogram result which was essentially normal, left side a bit hypoplastic & jugular vein very slightly pinched at C1 level but nothing that should cause me any problems.

So glad your surgery was a success!

B xxx
 
R

richymcp

Messages
9
Hi,

If I wanted to look into this as a possibility could I contact the Medserena directly or do I have to find a consultant first - I live in London. I'm not sure what the best route is to getting a diagnosis?

Btw amongst many of my odd symptoms (too many to list) was an odd thing that was happening to my jaw all last year, it would spasm and then open-up and I then couldn't close my mouth (was quite comical apparently!) I was refereed to a neurologist who said I probably had 'tight muscles in my neck' from inactivity - didn't even bother sending me for a scan. Maybe it has got something to do with my neck after all....?

Rich
 
J

Joly

Messages
47
Hi @richymcp
You can contact Medserena directly via their website to arrange a private scan and their radiologist will send you a report of the findings, you don't need a referral for this if you are self-funding. You need to specify that you need flexion, extension, and rotational imaging of the cervical spine and craniocervical junction and that the scan is to evaluate for CCI, AAI, and cervical spine instability and abnormalities. Afterwards, they'll also give you a CD of images you can then pass on to any consultants.

If you are seeking a diagnosis you are best to also consult a neurosurgeon, there have been mixed results attempting this on the NHS and most UK based people are choosing to send their scans to Dr Gilete who is based in Barcelona. If you would rather contact his office first, Dr Gilete can refer you to Medserena and will send you a partially completed form specifying exactly what kind of scans need to be done and Medserena will send the results on to him.

I know Dr Gilete is currently unavailable until September and his office is experiencing a backlog with the increased number of patients, but his assistant Amy is still available to contact at this time. It may be quicker, however, to get in touch with Medserena first and get the ball rolling on booking your imaging before you contact him.

I've seen quite a few accounts of people with CCI also having jaw issues. Have you looked into Temporomandibular joint syndrome (TMJ)? Jaw misalignment can also be caused by AAI or CCI and this can itself create a whole host of painful issues.

Tight neck muscles can also be the result of ligament laxity, the muscles contract to overcompensate - not due to inactivity necessarily, this can be an indication of instability. My neck muscles are very tight and painful and I have CCI and AAI.

Medserena: https://www.trulyopenmri.com/london-centre/
Dr Gilete: https://drgilete.com/contact-us/
 
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