Tracking CCI / AAI MRI & Treatment outcomes

[jeff_w]

Hi @Julia_S -

I feel fully well. Sound sensitivity is still there but it is only that „I don’t like a motorcycle right beside me“, nothing more. My brain is so crystal clear that only now I realize for how long brain fog sneaked into my life and built up over many years. Light has not been a real issue for me so that’s the same.

Most amazingly is this total brain fog freeness. I am talking and singing and talking and on and on. My family is speechless 😂

Perfect!!!!

 

[Julia_S]

@suevu as my fusion goes all the way down to t1, my mobility is limited to a 100%. Can’t look sideways, up or down without moving my whole upper body. It’s only a matter of adjustment though. I’ll take this any time in return to the new life I have. I am a single mother of a 6 year old. I missed the last two birthdays of my child and everything else. I will now be able to go with him to his school enrollments and have him move back home with me.😀
I have had very severe tinnitus. It is still there, it improved a lot though. They could not decompress the right side of my jugular veine because I lost too much blood and my right ear is much louder then my left so I think the tinnitus might be connected to that.
All other symptoms: either gone or shrinked to an absolute minimum so that I can’t say if this is a) just normal body reactions or b) might even go away completely over time.

 

[hezza]

Several hernitated discs, scoliosis and severe kyphosis of the cervical spine. CCI, AAI, subaxial instability (actually that was so bad, my spine looked like a spiral when they opened me up). My fusion goes from C0-T1 also they replaced C5-C6 disc and decompressed my almost collapsed jugular veine by bone reduction of C1.

Gracious, you were a tangled mess. So, they can put humpty dumpty back together again, after all. This news is filling our hearts to the brim for you!!

 

[Julia_S]

@jeff_w thanks to you really!!!! Thank you.

 

[Julia_S]

PS. Got a clinical diagnose for hEDS now. Not extremely hypermobile in other joints though. Will proceed with genetic testing because lots of EDS indicators within my family for generations from my grandma to my son.

 

[brando]

I'm interested in that, can you give us more details please?

i dont want fusion surgery either.

If you want to go down this route I’d get DMX / video xray done and get in touch with regenexx in Colorado. That’s what I plan to do. The guy in Belgium told me to get tested for Lyme and EBV, i have neither despite a ambiguous test result from ArminLabs. That lab are to be avoided too, they refuse to have their methods looked at by outside orgs who run trials and studies, so no one uses them.

 

[Malea]

Congratulations @Julia_S !! This is so great to hear.

 

[Malea]

What I wondered and I hope it isn’t inappropriate at this point: Are people who‘s spines are fully fused are still allowed to drive vehicles? Because the movement is so limited. 🤔

 

[Yuno]

PS. Got a clinical diagnose for hEDS now. Not extremely hypermobile in other joints though. Will proceed with genetic testing because lots of EDS indicators within my family for generations from my grandma to my son.

Interesting. Did you suspect before? Im wondering about this too... do you test positive on the Beighton score? Though iam wondering if this is an adequate means of testing, as it just takes into account a few selected joints....

 

[suevu]

If you want to go down this route I’d get DMX / video xray done and get in touch with regenexx in Colorado. That’s what I plan to do. The guy in Belgium told me to get tested for Lyme and EBV, i have neither despite a ambiguous test result from ArminLabs. That lab are to be avoided too, they refuse to have their methods looked at by outside orgs who run trials and studies, so no one uses them.

Why in Colorado and not Belgium?

Im in Europe, I could afford going to Belgium but not to Colorado certainly, if we add that medical costs are astronomical in the US...

I wish Gilete did those threatments.

 

[suevu]

@suevu as my fusion goes all the way down to t1, my mobility is limited to a 100%. Can’t look sideways, up or down without moving my whole upper body. It’s only a matter of adjustment though. I’ll take this any time in return to the new life I have. I am a single mother of a 6 year old. I missed the last two birthdays of my child and everything else. I will now be able to go with him to his school enrollments and have him move back home with me.😀
I have had very severe tinnitus. It is still there, it improved a lot though. They could not decompress the right side of my jugular veine because I lost too much blood and my right ear is much louder then my left so I think the tinnitus might be connected to that.
All other symptoms: either gone or shrinked to an absolute minimum so that I can’t say if this is a) just normal body reactions or b) might even go away completely over time.

Well I understand that in your case or others its well worth the price , is ther any possiblity of removing the fusion implants once you recover fully and the tissues are recovered too so you can gain again your mobility? Did the surgeon tell you anything about that?

 

[Julia_S]

@suevu nope. And it would be a bad idea in my case as my spine was a hot mess for a long time even before ME 😀
@Yuno I still expect another generic Eds type within my family. Testing coming up. Not a single score on beighton for me though. Not even close.
@Malea dont knowing I would be allowed but definitely will never drive again. Not good for me- gut feeling.

PS. I want to emphasize that my energy envelope is gone and pem is gone but some symptomes are still at the back of my head very lightly and I keep monitoring this. But pem, flu like stuff, brain fog, body temperature issues(my worst symptom) are gone.
Still noticeable: tinnitus and loud noises make me incomfortable
Also deconditioning of muscles, very different feeling to pem though.

 

[MEPatient345]

Are people who‘s spines are fully fused are still allowed to drive vehicles? Because the movement is so limited. 🤔

There is a young woman from the Netherlands who had C0 to T1 surgery with Gilete and is driving again using panoramic mirrors, according to her mother who has posted about it online. Some people also report they use swivel seats to turn whole torso. So, perhaps it will be possible for some people?. @Julia_S

 

[Josch2306]

@suevu That wasn’t me I guess. I did have sugar intolerance but it was not in my blod just it made me sick with „the flu“.

Thank you for your well wishes. I am out of the hospital as of today and what I am experiencing is magic. Everything is gone. I have post-surgery pain and my muscles are de-conditioned but my energy envelope is gone. It’s gone.

I have been bedbound for a year and I have had an energy envelope since my pregnancy in 2012 and now I feel like I was never that healthy in my life.

I feel like my nightmare turned into a fairytale.

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Congrats Julia ! Its so good to hear from this !
Enjoy your recovered live !

I am in the same situation now as you was a year ago. Diagnosed ME by the Chartie (Virchow Klinikum), recieving Antibodies, trying out different treatments.... but nothings really helps as Energy is fading away...

Reading from Jeff, Matt and You i am about to getting tested for CCI/AAI/Chiari too.
Berlin based as well, it would be great to hear how you proceeded with that !?
(Hausarzt- > Spezialist -> upright MRT, Involvierung Krankenkasse ? Der Weg zur OP ?)

Maybe PM would be more adequate for this, though i didnt find this option here...

Greetings und alles Gute weiterhin !!

Johannes

 

[suevu]

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Congrats Julia ! Its so good to hear from this !
Enjoy your recovered live !

I am in the same situation now as you was a year ago. Diagnosed ME by the Chartie (Virchow Klinikum), recieving Antibodies, trying out different treatments.... but nothings really helps as Energy is fading away...

Reading from Jeff, Matt and You i am about to getting tested for CCI/AAI/Chiari too.
Berlin based as well, it would be great to hear how you proceeded with that !?
(Hausarzt- > Spezialist -> upright MRT, Involvierung Krankenkasse ? Der Weg zur OP ?)

Maybe PM would be more adequate for this, though i didnt find this option here...

Greetings und alles Gute weiterhin !!

Johannes

I would recommend you Medserena in London since now they have plenty of experience with ME patients and know exactly what and where to look for.

 

[Julia_S]

@Josch2306 I went private on all diagnostics and fundraised for surgery. Charité did never reply to me when I sent them my first report from Spain. No one cared. Not only no help but also a lot of disbelief, unprofessional talking about Spain even though no one ever researched the clinic. I was pretty much told I was crazy to do this from every physician except for 1, who researches and then said Spain was my best option.
Im really sorry I have nothing good or motivating to say here but I will try to make something out of my story for others to benefit from it.
For now I am just afraid going private is the only way to do it, if you don’t want to wait for a long time and fight with a lot of resentments 😞

 

[Josch2306]

@Julia_S
Thx !
So the first step in the race is upright MRT i guess. Did you travel to Hannover to get it done ?
Can you tell who was the one and only physician who believed in your plan? A neurosurgeon ?

 

[CFS_for_19_years]

SEVERAL MORE POSTS UNRELATED TO THE TOPIC OF THIS THREAD HAVE BEEN MOVED TO: HAVE YOU RULED OUT CHIARI OR CRANIALCERVICAL INSTABILITY AS A CAUSE OF YOUR CFS

THE PURPOSE OF THIS THREAD IS TO KEEP TRACK OF ME/CFS PATIENTS WHO HAVE BEEN TESTED FOR CCI/AAI/CHIARI/SPINAL STENOSIS ONLY. GENERAL QUESTIONS AND COMMENTS RE CCI ETC. SHOULD GO IN THE ABOVE LINKED THREAD.

Posters please take notice of this. Thanks.

 

[Julia_S]

@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.

 

[bansealgair]

Upright MRI with flexion, extension and lateral position at Medserena, London on 08/08/2019.
Findings of CCI and AAI with further possible subaxial instability at C3-C4.
C1-C2 neutral misalignment and rotary AAI looking left and right.

Reported from Dr. Gilete on 31/07/2019.
Pending further investigation via cineradiology, venogram and opthamological testing.
Recommended candidate for fusion surgery C0-C2, possibly to include C3-C4.