Jeff anyone who have consulted with Dr Bolonesse ... help confused!

[humanrising]

I called dr Bolognese office today to get all information I needed to get the ball rolling on the MRI and consult. I wanted to make sure that the order for the MRI was written exactly how he would like it done. Jeff gave such clear recommendation about the imaging studies so I thought I would hear the same. the very sweet gal said to just send my old MRI and he will be able to see if there is anything wrong and if I need to have any other imaging studies done he will tell me.
I am confused because it seemed that what has been emphasized is that the doctor needs not only to see your neck in flexion or extension to view the area but needs the standing or tesla 3 MRI. She was super patient with me asking about it several times but told me that no he can see what others can't see from a standard MRI.
my doctor is leaving for 6 months for maternity leave and I can't really count on who ever I get at a clinic to help me order this. I also don't want to send the wrong MRI image and be told its not there where I might have shown up on the "proper" one.
if anyone who has already been though this beginning process with him wouldn't mind telling me what they think either here or PM me that would be grand! thank you!!!

 

[Mary]

@humanrising - I'm tagging @jeff_w for you here. To get a member's attention, you need to tag them by putting the "@" sign in front of their user name like I did here. That way they will get an alert they are being tagged.

Also, if you hit "reply" to a post someone has done, they will also get an alert that way.

 

[humanrising]

@humanrising - I'm tagging @jeff_w for you here. To get a member's attention, you need to tag them by putting the "@" sign in front of their user name like I did here. That way they will get an alert they are being tagged.

Also, if you hit "reply" to a post someone has done, they will also get an alert that way.

thank you mary!!! I am a real luddite! so can always use the help

 

[jeff_w]

Hi @humanrising,

Here's an excerpt from my website's diagnosis page, addressing your question:

One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.​

Good luck with this!

 

[humanrising]

Hi @humanrising,

Here's an excerpt from my website's diagnosis page, addressing your question:

One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.​

Good luck with this!

thanks for reaching out but I am sorry I must not made my issue clear this is your doctor's office I contacted

I was told I did not need to have the 3t MRI by dr bolonesse receptionist. when I questioned it she went and asked and came back and said I was wrong, they told me to send my old standard MRI. no flexion no extension.

you have emphasized on all your posts that dr bolonsse needed to have the "tesla 3" .
and when you got it the imaging he was using standing with flexion and extension

either way the receptionist said he doesn't need to have that tesla 3 MRI because he can see it in any MRI or he extension flexion

again, I want to not only want to send them what they really need and for everyone else who is also looking at doing this to get the right imaging done.
hoping that since you have been talking to others who have followed suit are they being told to send a standard MRI to dr B like just was or have they all sent a tesla 3 thank you!!!!!!!!!!!

 

[StarChild56]

So I had a supine cervical MRI - in an Open MRI. I had the specific views (extension/flexion but I do not know the details my specialist wrote the additional orders, I emailed them to my PCP and she added it to her regular order for an Open Cervical MRI).

Dr. Bolognese diagnosed me as having CCI/AAI from that MRI.

I just called the MRI office. They are not using Tesla 3. My open MRI machine was only Tesla .3 - far less than a Tesla 3.

Just my 2 cents.

 

[toyfoof]

I had a regular supine cervical MRI (no additional views) in a 3T machine. This is what Dr. Bolognese personally told me to get when I emailed him to ask. I imagine he'll take the non-3T scans as a starting point. He told me that if there was any uncertainty or need for additional views, he'd order those himself once he looked at them.

For what it's worth, I am one of the two people (I think) who did NOT receive a CCI/AAI diagnosis (my issues are lower down in the C5-C7 region). But I don't think it's because I didn't have the correct views, I think it's because I actually do not have CCI/AAI.

 

[lafarfelue]

Sorry to interject on this thread.

my issues are lower down in the C5-C7 region

I hope it's ok to ask: Have you posted about this anywhere on the forum that I could read? (I may have seen it before but my memory is so terrible.) Would really like to hear a little more about what this may mean (at an individual level for you, or a broader level of the Dr mentioned that?) and your experiences in diagnosis and possible treatments.

 

[toyfoof]

Hi @lafarfelue

I do have a thread where I've discussed some of this, look here and down at post #45 and below I discuss my MRI results and what I've been doing since then. I need to update it, but not much has changed -- I'm doing PT and think that as I get stronger in my neck and core, I feel a little bit better. Please feel free to comment in that thread and I will reply!

 

[bjl218]

I'm guessing that Dr Bolognese is trying to save you some money/effort by taking a look at the images you already have first. If he can form a diagnosis based on that, great. If not, he'll probably ask you to get additional images. This is probably what his assistant meant when she said that if you need additional images, he'll tell you.

 

[xrayspex]

I have read from Jeff and elsewhere that Dr B is ok with supine mri's whereas some of the other experts might want upright etc I would trust what their office most recently told you and go with that

 

[frozenborderline]

Bolognese said he was fine with supine but I wanted to get upright w flex/ex Bc I was nervous it wouldn’t show on supine and also Bc I wanted to eventually show it to other doctors without getting a second mri. The main pitfall w/ upright mris is if you can’t sit still enough due to pots /pain/fatigue. I took 4 Ativan plus some gabapentin for mine and apparently the views were pretty clear. I do not think I could’ve done it without the sedatives. I had also gotten saline beforehand but that may have worn off by then. Just my 2 cents. Bolognese was fine with reviewing my upright flex ex mri even though he prefers supine 3T.

 

[humanrising]

I spoke to the sweet Vanessa and Dr B's office again and since we have been calling them a lot... they had a little meeting and wrote up what they want from here going forward in terms of paper work and MRI's. He is fine seeing an regular MRI, he asked for a cervical and a lumbar which I had already had both recently and then a good deal of paper work. I finally got it in yesterday and I will keep you posted. thanks for everyone's input

 

[humanrising]

I posted in another section where I should have done it here. I sent it and he found something without the flexion and extension and it not being a tesla 3. I have to wait till june to here about it.
I really hope that what ever he concludes its based on the image and not my symptoms.
I went though my savings and lost five hellish years of my life to treating lyme disease. when I am now sure I don't have lyme, my doc didn't read test properly and we went on symptoms. Dr klinghart does muscle testing and I tested positive for 4 tick related illness so I am very gun shy on "symptom's" when my symptoms look like a hundred things. I will keep everyone posted on his findings.

 

[bombsh3ll]

I had already seen Dr Gilete in Spain who diagnosed cranial settling and suggested C0-2 fusion. I sent my scans to Dr Bolognese (the only thing he didn't have was the cinerradiology done in Spain) for a second opinion and he said no sign of CCI and to get checked for intracranial hypotension (which I already have - negative). The scans I sent were upright flexion, extension, neutral and rotation and a supine 3T brain and whole spine with contrast.

Somebody one one of these forums said that Dr B only diagnoses cranial settling through some form of traction scan which you have to go there for in person and costs thousands.

I really don't know what to do now. It seems the only way I will ever know if this is my issue or not is to have the c0-2 fusion surgery which is very expensive and not without risks.

B xxx

 

[bombsh3ll]

I spoke to the sweet Vanessa and Dr B's office again and since we have been calling them a lot... they had a little meeting and wrote up what they want from here going forward in terms of paper work and MRI's. He is fine seeing an regular MRI, he asked for a cervical and a lumbar which I had already had both recently and then a good deal of paper work. I finally got it in yesterday and I will keep you posted. thanks for everyone's input

I don't know which country you are in, but I am in UK, used the cheapest postage option to send my CDs, and literally had a brief email response from him about two weeks later. I wasn't charged anything for it either which was awesome, but I had been expecting to be scheduled for a telephone/skype consult in a few months where I could ask questions.

B xxx

 

[bombsh3ll]

Hi @humanrising,

Here's an excerpt from my website's diagnosis page, addressing your question:

One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.​

Good luck with this!

What concerns me about this though is the idea that if you have EDS, or even if you don't, things could look normal in the supine position (which also corresponds to when we feel best) but move into a pathological position under the effects of gravity. I guess he knows what to look for though.

B xxx

 

[hezza]

Hi @humanrising, have you had your consult yet?

 

[humanrising]

I had it a few weeks ago.
I was honestly disappointed. I had no idea why he scheduled the appointment since he told me almost nothing. after i pressed it he said, that I should see a PT to see how I do with that, recommended a guy in Rhode Island who specializes in EDS.
I live in California so going to RI for 6-9 months for PT is not an option.
I was left feeling that maybe it wasn't a "good enough MRI" or that he had looked at it prior to sitting down with me. (my feeling not any evidence of that)

I wanted to know if there was anything on my MRI that spoke to ANY issue or something become an issue latter. maybe i should n't have expected that from a surgeon who specializes in CCI. I know that in order to warrant surgery they need to go by not only the MRI results but also symptoms and my symptoms are messy....so like i said before I wanted the image read more then "me being read". I have had only negative response to traction by PT because it caused me neck shoulder and back pain my fibromyagia doesn't help things
If i am laying flat on a massage table and someone who knows what they are doing does manual traction that helps. Not what he is looking for to make a diagnosis but i stated all this in my paper work.
i don't want my disappointment to discourage anyone from pursing this I think we have to look at what speaks to us and keep the faith!

 

[hezza]

Thanks for that, all input is helpful, my videoconference w him is not until Sept 23. This will help me not to pin too many hopes on it, just to be cautiously optimistic, maybe.