Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[bombsh3ll]

Thanks for that B,

Do you know how much Dr Bolognese charges for his initial evaluation? (I've sent him my scans and forms as well.)

He didn't charge me anything but all I got was a two line email stating I had no apparent instability and I should be evaluated for CSF leak. BUT the supine contrast scan in 3T of my whole brain and spine WAS what I had to check for CSF leak, and it was negative. That makes me wonder if he actually looked at it. I also sent my upright MRIs in flexion extension rotation and neutral.
I understand from others though he is only diagnosing cranial settling based on traction, which was not mentioned at all in the email I got. Also I could not send the DMX scan I got in Barcelona as I don't have it, which was also what Dr G used to diagnose Cranial settling.

B xxx

 

[AnkeC]

$300

Thanks Remi....
I hate that money has to be such a consideration where health is concerned.

 

[bombsh3ll]

$300

I have the impression he would only let you have the skype or phone consult if he saw something abnormal on the scans you sent, but I could be wrong. That is what seems happens with others, his office contacts them for a consultation. Perhaps that is why he charged me nothing as he didn't feel I had anything to consult on.

B xxx

 

[bombsh3ll]

That is also why I am conflicted, I sent the same scans and symptom list independently to two specialists and got two different outcomes. Dr Gilete did not even see the supine 3T scan that I sent Dr B, as I only had it this March.

B xxx

 

[mattie]

Yes I will do, that is why I have booked a further Skype consult so that I can ask the questions I need to ask & be clear about the risks of perioperative mortality.

I personally feel that as long as the surgery didn't kill me or leave me paralysed or on a ventilator, it is worth trying, because without that I will never know.

Amy told me they are now requiring a MR venogram pre-op, and an opthalmology examination, was that the case when you were there recently?
B xxx

No it was not. Actually I am having an MRI venogram tomorrow.

 

[AnkeC]

He didn't charge me anything but all I got was a two line email stating I had no apparent instability and I should be evaluated for CSF leak. BUT the supine contrast scan in 3T of my whole brain and spine WAS what I had to check for CSF leak, and it was negative. That makes me wonder if he actually looked at it. I also sent my upright MRIs in flexion extension rotation and neutral.
I understand from others though he is only diagnosing cranial settling based on traction, which was not mentioned at all in the email I got. Also I could not send the DMX scan I got in Barcelona as I don't have it, which was also what Dr G used to diagnose Cranial settling.

B xxx

It certainly sounds like you have had just about every possible scan to investigate the area (potentially) involved. But you're right... he might have seen something had he been able to look at the DMX...then again, maybe not. It's pretty full on, and terribly confusing.

I didnt have access to an upright MRI without having to fly to another state, and then I probably wouldnt have been able to afford it. So I opted for a 3T supine MRI and xrays with flex, extension and rotational views to send off. My brain MRI's are a couple of years old, but I'll use them if needed.
I have lots of "interesting" neurological symptoms and potential tethered cord signs, so I have my fingers crossed that they don't see anything as I have no idea what I would do if faced with a decision to have spinal surgery.

 

[MEPatient345]

Obviously I will never ever recommend this surgery to anyone. Even if I would recover to 100%.

I understand that Mattie. I appreciate nonetheless all that you are sharing. It’s generous of you to give so much time to answer our questions.

I personally feel that as long as the surgery didn't kill me or leave me paralysed or on a ventilator, it is worth trying, because without that I will never know.

Amy told me they are now requiring a MR venogram pre-op, and an opthalmology examination, was that the case when you were there recently?

I’m feeling similarly to you @bombsh3ll.
Do they do the venogram and ophthalmology in house in Barcelona?

 

[bombsh3ll]

I understand that Mattie. I appreciate nonetheless all that you are sharing. It’s generous of you to give so much time to answer our questions.


I’m feeling similarly to you @bombsh3ll.
Do they do the venogram and ophthalmology in house in Barcelona?

Yes they do.

B xxx

 

[bombsh3ll]

So I opted for a 3T supine MRI and xrays with flex, extension and rotational views to send off. My brain MRI's are a couple of years old, but I'll use them if needed.

I think that should give him enough to work with initially. Amy just said today it would be worth me sending in my supine 3T of brain and whole spine (although it was done with contrast, which on Dr B's website it says without contrast - perhaps that is why he may not have looked at mine).

B xxx

 

[bombsh3ll]

No it was not. Actually I am having an MRI venogram tomorrow.

Can I ask what is the reason for the venogram now, after your surgery?

B xxx

 

[mattie]

Can I ask what is the reason for the venogram now, after your surgery?
B xxx

It's just a checkup. If anything irregular shows up I'll post it in my surgery update thread.

 

[bombsh3ll]

It's just a checkup. If anything irregular shows up I'll post it in my surgery update thread.

Please do. Did Dr Gilete's team advise it? Amy said they are requiring it on everyone now pre-op.

B xxx

 

[Daffodil]

@bombsh3ll i wonder if, before you have adjacent levels fused too, you should consider getting just the top levels done and maybe opt for PRP or stem cells for the lower levels, which are only mildly unstable?

i guess you could get many levels fused but i wonder if it wont turn into a surgery rabbit role, where you will need several hundred thousand dollars for revisions and/or complications and whatnot.

but then again i have not tried prolotherapy yet so just speculating....and then even with prolotherapy, you might eventually need more fusion anyway.....not sure

 

[bombsh3ll]

@bombsh3ll i wonder if, before you have adjacent levels fused too, you should consider getting just the top levels done and maybe opt for PRP or stem cells for the lower levels, which are only mildly unstable?

i guess you could get many levels fused but i wonder if it wont turn into a surgery rabbit role, where you will need several hundred thousand dollars for revisions and/or complications and whatnot.

but then again i have not tried prolotherapy yet so just speculating....and then even with prolotherapy, you might eventually need more fusion anyway.....not sure

Thanks, that is really thoughtful. I wouldn't have access to those therapies though in the UK, and they are also likely to be very expensive. I am also not sure what the scientific evidence is in support of them. I think I will just see what Dr Gilete advises to fuse. It is probably not that much bigger an operation.

There is a young woman called Melanie Hartshorn who's been in the media, she had whole neck and lower spine fusion with Dr G and did really well.

What I wonder is, if I genuinely did not need this surgery and had it anyway, would there be any long term harm other than the loss of money and less movement in the neck??!! It seems my only way to find out, like Mattie said is to be a guinea pig.

B xxx

 

[Daffodil]

@bombsh3ll since you are in the UK, do you have to pay out of pocket for dr. g's surgery?

in case you change your mind, prolotherapy is everywhere. the most advertised is probably Regenexx. they have clinics in europe too. but i agree, it is very new and who knows if it even works or lasts

thanks for telling me about hartshorn, i think i may have read an article about her.

i know this would require a trip to the US, but you could get a third opinion from dr. Henderson. if one doc told me i need surgery and one did not, i would want a third opinion personally....but thats just me....

you could get an opinion from a NUCCA chiropractor but .... that might be iffy too

xo

 

[Martine form Berlin]

Hello, I am new here and am reading, reading, reading and reading. I just introduced myself on ´the introduction´ page an hour ago, but my name is Martine, I am 46 years old, I am Dutch and live in Berlin, Germany.

I read that Mattie (also from the Netherlands) had his upright MRT in Hannover, Germany. Hannover is only about a three hour drive from Berlin. I´d like to know if there are others here who have experience with CCI-Upright MRT in Hannover? Are the docs acquainted with CCI and do they know how to take the pictures (from the right angles etc. so that Dr. G in Barcelona can judge them)? I would be very grateful for your answers.

Hartelijke groet,

Martine

ps: I forgot a diagnose in my ´Introduction page´ and I've no idea where this forum found this picture of me . Where can I change those little things in my profile?

 

[bombsh3ll]

since you are in the UK, do you have to pay out of pocket for dr. g's surgery?

Yes I was quoted £58 that is just the hospital not travel, accommodation, carer costs etc. It would mean selling my old house which I currently rent out (it is my only source of income besides disability benefits), and maybe some help from my dad. It would be a real stretch for us but I will do it if it looks like it may give me some quality of life back.

I contacted Dr Henderson's clinic to see if he reviewed scans remotely, but have not heard back.

I am simply not well enough to travel to the US, nor have the money, & couldn't risk being admitted to hospital there & racking up bills that would bankrupt us.

I did a very stupid thing a couple of years ago AFTER becoming ill - I had a procedure called Atlas Profilax done on my neck, hoping to improve the blood flow to my brain. It was very rough and painful.

I really regret that, however all my scans have been done since then & show no damage from it, but I would NEVER go near any kind of chiropractor or neck manipulation again. It is way too dangerous, especially if you may have an issue like CCI.

B xxx

 

[Daffodil]

@bombsh3ll wow. i was considering trying atlas profilax but just didnt have the guts. i am glad there was no damage.

about surgery....i guess i would do it too if i were you...i would just want to make sure there was some way i could have revisions if needed in the future.

henderson does not do remote consults.

 

[bombsh3ll]

henderson does not do remote consults.

That's a shame, I thought I read somewhere that he had done that for someone.

Still, I wouldn't be going there for the surgery, I'd still be going to Barcelona. I'll see if Dr Gilete has anything to add re my rotational MRI and supine brain/spine.

No, please don't have anyone not medically qualified push and shove on your skull/upper neck like I did. I was foolish & really think it could have made me worse. It has caused strokes in some people. I was just desperate.

B xxx

 

[Pondering]

We could always leave our names & any personal data off the reports. I would be really interested to see other people's reports.

I think it is less useful and potentially harmful to post medical imaging online for interpretation by non-medical personnel, as is the case on other forums. This invites misinformation/speculation about possible diagnoses that are not necessarily accurate and can cause a lot of anxiety and uncertainty, or conversely false reassurance.

B xxx

I think assembling the information in a single place is a great idea. If nothing else if we start to pull this together here we then can use it to perhaps get a researcher interested. It also would provide a way to be able to start to see (in a very very preliminary way) if this has any basis at all. If I was rich, I would be super happy to fund sending peoples scans/medical histories off to 2 (or more) of the doctors doing the diagnostics to see what we get back. It also could then start to provide a similar function to the various CFS bio-banks... Speaking of which, maybe one of them might be interested in the scans if they are already holding data in a private way? (anyone have any contacts?)

Projecting out... If we could assemble enough of these scans together along with results that could be verified we then could training a machine learning algorithm? My understanding is that in some cases they are now actually as good as or better at reading certain types of scans.

If this does actually work out for a sub-set of cases, it could end up overwhelming the available people to do the diagnosis/work.