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

[StarChild56]

Dr Bolognese just said do a supine MRI. But it might be because I said I’m very unwell and unable to sit up. But from what I’ve read he’s asking lots of patients just for supine MRI scans on this forum?

I only had a supine MRI, although I had flexion and extension but because I had it in an Open MRI it was only a .3T (which Dr. Bolognese said has very poor images). But Dr. Bolognese diagnosed me with CCI. And I had a video conference with him and it was $300. However, my specialist met with Dr. Bolognese for him to review my MRI.

 

[StarChild56]

Hi, by PT, do you mean physiotherapist? My main worry is that my problem may not just be CCI. And if I do some kind of manipulation without knowing exactly what’s going on, I may damage something or end up with some problems. I’ve basically had a lot of autonomic symptoms from birth including severe tachycardia, hyperhidrosis, urinary and bowel issues, heat intolerance and many other things, making me worried I may have chiari or some other genetic issue going on as well.

I am a patient with Dr. Bolognese, I am scheduled for surgery.

I just wanted to chime in that I have been having PT and it has been very helpful (though temporary in one way). But my specialist (who is the one that met with Dr. B to review my MRI) was very adamant that he speak to the PT and give instructions prior to me having any manual cervical traction. He did so. I have had dramatic results and love the manual cervical traction but it is much different than what I've seen people post You Tube videos and such. She is really, really careful. She only cradles my skull and under it just so and applies pressure gradually pulling backwards. If you have severe neck problems even aside from CCI (I do) - you can get paralyzed by someone manipulating your neck. There is no rough pulls or pushes or anything like that.

I do have an overall lower level of neck pain, my migraines lessened dramatically (though they are starting to climb back up) and my migraine meds have been working to take away a lot of the pain whereas before PT the opposite. And any time I miss a week (I only go once a week, not strong enough to get out more though it would help) my symptoms increase.

I have an adult child who takes me, in my wheelchair and that is the only way I could do this...I don't know if you have that option but if there is someone who could take you and you go in your pajamas (I do) in the wheelchair it may be doable?

 

[StarChild56]

Someone very helpful said to me that I should have an MRI/CT of my full spine as actually some issues from lower down can impact the cervical area which is why some patients with CCI/AAI who get fusion don’t get full relief from symptoms. This may be a good point as I actually also have scoliosis and my pelvis is tilted. May be useful to others too.

That is an interesting point.

I have found that my preexisting severe low back problems are helped by the cervical traction and there was a video posted (maybe on this thread) by an Osteopath and PT who showed the link between the low back and neck - it was fascinating. He also claims that the PT exercises you do to strengthen your core and fix your posture are 50% of the equation after surgery. I also thought I read that on Jen Brea's twitter that her surgeon told her now it was her year of hard work to ensure the surgery is successful.

But I wanted to add that the other thing Dr. Bolognese has been adamant about with me is specific PT to strengthen my core, neck and upper back now before surgery and for one year post surgery. This scared me at first because I am almost always lying down in my recliner or bed. I can do almost nothing. However, my PT devised "exercises" that I do lying down. And I was already familiar with "braces"- being able to tighten your TVA (very inner core, not your six pack which is the most superficial muscles) and hold them. It has been a challenge for me the last 2 or so weeks but I have worked up to being able to do a good number of them throughout the day when you add them up. All done lying/sitting. I overdid it several times and paid dearly for a couple days. But truly they are very simple exercises but I see already that I am able to do them so much easier than when I started.

My PT described the core as one that goes all the way around your torso like a back brace, and that this will help support your neck along with the "exercises" to fix my posture.

 

[rainbowbluebells]

That is an interesting point.

I have found that my preexisting severe low back problems are helped by the cervical traction and there was a video posted (maybe on this thread) by an Osteopath and PT who showed the link between the low back and neck - it was fascinating. He also claims that the PT exercises you do to strengthen your core and fix your posture are 50% of the equation after surgery. I also thought I read that on Jen Brea's twitter that her surgeon told her now it was her year of hard work to ensure the surgery is successful.

But I wanted to add that the other thing Dr. Bolognese has been adamant about with me is specific PT to strengthen my core, neck and upper back now before surgery and for one year post surgery. This scared me at first because I am almost always lying down in my recliner or bed. I can do almost nothing. However, my PT devised "exercises" that I do lying down. And I was already familiar with "braces"- being able to tighten your TVA (very inner core, not your six pack which is the most superficial muscles) and hold them. It has been a challenge for me the last 2 or so weeks but I have worked up to being able to do a good number of them throughout the day when you add them up. All done lying/sitting. I overdid it several times and paid dearly for a couple days. But truly they are very simple exercises but I see already that I am able to do them so much easier than when I started.

My PT described the core as one that goes all the way around your torso like a back brace, and that this will help support your neck along with the "exercises" to fix my posture.

I’m very interested in this, because in the past when I have done core exercises while lying in bed (very gentle ones), I have always felt small improvements, which other exercises haven’t really done. The ones I used to do were sort of modified yoga poses.. couldn’t really be called the usual yoga though as very very gentle. I would be interested in knowing what sort of exercises you have been doing that helped? do you by any chance have a sheet with diagrams etc, or descriptions?

I only had a supine MRI, although I had flexion and extension but because I had it in an Open MRI it was only a .3T (which Dr. Bolognese said has very poor images). But Dr. Bolognese diagnosed me with CCI. And I had a video conference with him and it was $300. However, my specialist met with Dr. Bolognese for him to review my MRI.

I think I may do a similar thing but on a higher Tesla machine hopefully. Are you in the US? I do not know anyone in the UK who will agree to work with a US doctor on this (if anyone knows please tell me!!)

 

[rainbowbluebells]

I am a patient with Dr. Bolognese, I am scheduled for surgery.

I just wanted to chime in that I have been having PT and it has been very helpful (though temporary in one way). But my specialist (who is the one that met with Dr. B to review my MRI) was very adamant that he speak to the PT and give instructions prior to me having any manual cervical traction. He did so. I have had dramatic results and love the manual cervical traction but it is much different than what I've seen people post You Tube videos and such. She is really, really careful. She only cradles my skull and under it just so and applies pressure gradually pulling backwards. If you have severe neck problems even aside from CCI (I do) - you can get paralyzed by someone manipulating your neck. There is no rough pulls or pushes or anything like that.

I do have an overall lower level of neck pain, my migraines lessened dramatically (though they are starting to climb back up) and my migraine meds have been working to take away a lot of the pain whereas before PT the opposite. And any time I miss a week (I only go once a week, not strong enough to get out more though it would help) my symptoms increase.

I have an adult child who takes me, in my wheelchair and that is the only way I could do this...I don't know if you have that option but if there is someone who could take you and you go in your pajamas (I do) in the wheelchair it may be doable?

So the main issue is I don’t have a specialist who is working with me. Only a cardiologist who is helping with pots/IST (only just started meds). My GP doesn’t know anything at all and neither do any of the GPs I’ve ever met. And then getting a physiotherapist who firstly knows M.E (I haven’t found any), let alone one who will work with doctors in America or with CCI.. I don’t have much energy at all, it’s been very hard just researching this information and going on forums (completely bedbound, even getting to the toilet is getting very difficult now in a wheelchair, leaning on my mum to use the toilet for a minute or so). So I don’t want to spend energy on anything else, because I need that energy to go and do the MRIs and try to figure out Whats wrong with me. Hope that makes sense.

 

[frozenborderline]

It’s interesting that some people were told by bolognese that if they didn’t have a dramatically positive reaction to traction not to seek imaging. I had some positive reaction to traction but hard to say if dramatic but I had a lot of the symptoms of cci. And I had *some* benefit from a hard collar adjusted right, but I wouldn’t say dramatic. And now it seems my imaging has shown cci as bolognese is going to have a consult w / me.

One thing that kind of bums me out is just having a hard time gauging my response to traction. I generally get a positive response but it doesn’t help w PEM a lot, usually only w the pressure headache and dizziness, and so to get an accurate gauge of my response to traction, it was difficukt when doing it scheduled w a Pt as sometimes I wouldn’t be having vertigo or symptoms flaring during the time we were supposed to do traction. When the PT trained my sister to do traction, this was good as I could do it whenever I had a flare, and so I got more positive results that way. -and we wrote that on the writeup we sent to bolognese. Hopefully e takes that into account. All in all I think that the traction trial has been difficult because of my staking so much on this diagnosis that I have gotten nervous and second guessed so much that it is difficult to gauge my true reaction to traction. It’s generally positive I think, but when there’s so much resting on this decision, I think my mind becomes clouded by doubt and I am not paying attention to my body. Which is part of why I took so long to get back to bolognese with the writeup.

But all in all, with the symptoms that I have, which I have written about in more detail elsewhere, I am fairly sure that I have cci and that it is contributing to my problems. And I am also fairly sure that the PEM would prevent me from just doing conservative treatment for it and strengthening my neck muscles. So that basically leaves surgery and the expensive stem cell treatments that some have benefited from.

Although I have to admit I’m also curious about bpc-157 and electromedicine.

 

[sb4]

Although I have to admit I’m also curious about bpc-157 and electromedicine.

I was thinking about this the other day. What if you could hold your skull in proper position (halo, cervical collar, etc) then inject your neck with bpc-157?

 

[frozenborderline]

I was thinking about this the other day. What if you could hold your skull in proper position (halo, cervical collar, etc) then inject your neck with bpc-157?

It’s a thought. But I’m not great with diy injections and that’s a VERY sensitive area. I’d be more curious about electromedicine. But it doesn’t seem like many people are doing Becker’s style of dc microcurrents using silver electrodes, at an injured site. I think it could work well. Either way I’m kind f mad I dragged my feet on this whole thing Bc now it looks like I do have cci but will have to wait for treatment. In the meantime I don’t have much plans to help w the vertigo , pain, and boredom (my quality of life has been so much worse since the cci symptoms appeared in December and I became bedridden). And now Bc I dragged my feet and presumably because lots of new patients are flooding bolognese, I have until June 3rd to wait for my video conference w/ him. And who knows what he’ll say. I am almost tempted to pay extra for gilete to review my imaging but I don’t even have a rotational view. This year , I gave myself an ultimatum of sorts,

 

[bombsh3ll]

@bombsh3ll i also just had a thought. You said your scans didn’t show any clear CCI.. the scans you had done in the UK. Whereabouts did you have them? I’m wondering if it’s because the MRI scans were weaker in strength.. because I’ve heard 3T MRI scans show a lot more.(think they’re only available for supine though).

I went to Upright MRI in London and Medserena in Manchester. Medserena was recommended by Dr Gilete.

I do not know what tesla the scans were. The flexion and extension from London seemed very clear pictures when Dr G had them up on the screen.

B xxx

 

[bombsh3ll]

I only had a supine MRI, although I had flexion and extension but because I had it in an Open MRI it was only a .3T (which Dr. Bolognese said has very poor images). But Dr. Bolognese diagnosed me with CCI. And I had a video conference with him and it was $300. However, my specialist met with Dr. Bolognese for him to review my MRI.

I wish we could get this kind of care in the UK! Can I ask what symptoms led to you being evaluated for CCI?

I am trying to work out whether a) I have it and b) whether surgery will help.

I have spoken to more people online whose orthostatic intolerance didn't improve with surgery than those whose did.

I have decided against the halo given the cost & fact it was only offered for 48 hours and it took Jeff 4 months of playing around with it before establishing its full benefits.

I think if both Dr Gilete and Dr Bolognese concur that I need surgery then I will just have to try and fund the surgery in Barcelona somehow as it seems the only real way to know. I personally don't think having anyone tug and pull on your neck or faffing about yourself with various collars is either particularly safe or informative.

B x

 

[rainbowbluebells]

I wish we could get this kind of care in the UK! Can I ask what symptoms led to you being evaluated for CCI?

I am trying to work out whether a) I have it and b) whether surgery will help.

I have spoken to more people online whose orthostatic intolerance didn't improve with surgery than those whose did.

I have decided against the halo given the cost & fact it was only offered for 48 hours and it took Jeff 4 months of playing around with it before establishing its full benefits.

I think if both Dr Gilete and Dr Bolognese concur that I need surgery then I will just have to try and fund the surgery in Barcelona somehow as it seems the only real way to know. I personally don't think having anyone tug and pull on your neck or faffing about yourself with various collars is either particularly safe or informative.

B x

Hi B, sorry to jump in, do you also have EDS?

 

[rainbowbluebells]

I went to Upright MRI in London and Medserena in Manchester. Medserena was recommended by Dr Gilete.

I do not know what tesla the scans were. The flexion and extension from London seemed very clear pictures when Dr G had them up on the screen.

B xxx

Ah ok. Yes. It’s nothing to do with that then. Thanks

 

[bombsh3ll]

Hi B, sorry to jump in, do you also have EDS?

Yes I do - well I am officially diagnosed with it (hypermobile type) by a genetecist, and some features about me & my past medical history and family members do seem to fit - however I have never been particularly hypermobile, and only became ill very suddenly after a forceful valsalva in 2014. I am not 100% convinced of the diagnosis myself, I pursued it as a possible reason for me having severe POTS. It hasn't led to any treatment but I do believe it has been helpful as an officially recognized label in terms of disability benefits and interaction with healthcare services.

How about you, do you have it or think you might?

B x

 

[jeff_w]

Hi @bombsh3ll

I
I have decided against the halo given the cost & fact it was only offered for 48 hours and it took Jeff 4 months of playing around with it before establishing its full benefits.

Oh, sorry I wasn't clear about this.

I was in the halo for 4 months, but it didn't take me 4 months to figure out if the halo would help. Once I realized that I needed more lift from the halo, and had it adjusted, the full benefits of it were immediate. POTS was gone, PEM was gone, etc.

On that note: Jen Brea's POTS has now been gone for a while!

 

[StarChild56]

I’m very interested in this, because in the past when I have done core exercises while lying in bed (very gentle ones), I have always felt small improvements, which other exercises haven’t really done. The ones I used to do were sort of modified yoga poses.. couldn’t really be called the usual yoga though as very very gentle. I would be interested in knowing what sort of exercises you have been doing that helped? do you by any chance have a sheet with diagrams etc, or descriptions?

I will try to describe it accurately
¨Braces¨
Laying on back (on bed or floor)
Knees up, feet on bed
If you imagine trying to suck in the LOWEST part of your pelvis area where the zipper of the jeans are, that is the area you want to pull in
At the same time, sort of push the small of your back into the bed and slightly tuck your pelvis up - you do not want a large curve in your back, you do not want space between your low back and your bed
So tighten that super low core, slightly tuck your pelvis in/up and push the small of your back into the bed so there is no space between your back and the bed/floor
Hold for 5 seconds (if you can, at first I could not)
Now, I did these for years off and on and had not done them for a while

I also do these ¨braces" throughout the day while I am reclining in bed or recliner and actually started this way a couple months ago before moving to the more formal lay on your back, knees up. I would not have been able to do those kinds if I had not already been bracing throughout the day for a while (built up a little strength).

So after I began with the braces on the floor/bed with knees up again - and after doing them for a couple of weeks I added in something I would never have thought I could do:
Marches

So as you hold your ¨brace¨ you slightly lift one foot up off the bed/floor - at first only a few CMs but sometimes a little more (I had previously written 1 inch but no, nowhere near that). Hold for 5 seconds. Then I rest a few seconds and do the other leg.

I hope this makes sense. I will see if I can find pics on line and will add a link if I do. I do have a handout but I would have to find it (which I can at some point), make sure that I hide my identifying info and then scan so that might take me some time.

These have really helped me along with my other ¨exercises¨. If I were just starting out, I would not start with the laying on the floor with knees up - I would start just holding that ¨brace¨, the contraction of the correct TVA muscles, for up to 5 seconds throughout the day while reclining. But I am only able to recline most of every day - your fitness level may be better than that.

I think I may do a similar thing but on a higher Tesla machine hopefully. Are you in the US? I do not know anyone in the UK who will agree to work with a US doctor on this (if anyone knows please tell me!!)

That would probably be good to have a higher Tesla as I said Dr. Bolognese said .3 is very poor quality!
Yes, I am in the US.
Oh, I am so sorry and I hope you can find someone to work with a US doc! Best best best wishes

 

[StarChild56]

I would be interested in knowing what sort of exercises you have been doing that helped? do you by any chance have a sheet with diagrams etc, or descriptions?

I found a great article and it has 2 videos - the first no audio just showing anatomy. The second video is a woman showing how to safely do braces. She then goes on to more advanced leg extension which I can not do and then even more advanced things.

Note - I was told to gently try to have my low back where it arches push into the floor/bed and she says just keep it as it is. Also she says hold for 15 seconds and I could not even do 5 seconds at first and again, depending on your mileage I had to start just simply holding the ¨brace¨ contraction while laying/reclining in bed or recliner without the knees being up just however I was in my recliner and that helped me gain strength to then do the more formal lay on bed/floor knees up braces.

https://www.pelvicexercises.com.au/abdominal-bracing/

 

[StarChild56]

So the main issue is I don’t have a specialist who is working with me. Only a cardiologist who is helping with pots/IST (only just started meds). My GP doesn’t know anything at all and neither do any of the GPs I’ve ever met. And then getting a physiotherapist who firstly knows M.E (I haven’t found any), let alone one who will work with doctors in America or with CCI.. I don’t have much energy at all, it’s been very hard just researching this information and going on forums (completely bedbound, even getting to the toilet is getting very difficult now in a wheelchair, leaning on my mum to use the toilet for a minute or so). So I don’t want to spend energy on anything else, because I need that energy to go and do the MRIs and try to figure out Whats wrong with me. Hope that makes sense.

It makes complete sense! I am truly sorry that is a difficult situation to be in.

I am not in a wheelchair in my home, but rarely do I leave my recliner or bed.

When I was first told I had to have PT I was very worried because I could not imagine I could sustain that - even though my adult kids/husband would drive me, push my wheelchair, help me to the car - etc. Just putting on clothes (and I go in PJs or very soft comfy PJ like clothing) and getting into the car, being out and coming home is very difficult for me. But for me, the gains I made with the PT outweighed the PEM I get and now that I have been doing these exercises (there are more than the braces), I feel my neck and core are a lot stronger I really can tell the difference. Which is helpful since my surgery is not long now. I would not have thought I could have gone to PT 2x a week (which I did for a while).

But - it does take energy and it does give me some PEM.

You have to use your ¨energy" that we do not even really have for the most important things so I completely get that <3

I really wish you the best.

 

[StarChild56]

I wish we could get this kind of care in the UK! Can I ask what symptoms led to you being evaluated for CCI?

I am really spacey and my brain fog is like cement so hopefully I will be somewhat coherent.
My specialist was concerned for quite sometime first about CSF leaks (which I have) and also wanted to rule out CCI. He first referred me to the top specialist for CSF leaks, I was accepted but he is so busy his office could give no estimate when I would be seen. Meanwhile, I was trying to get another cervical MRI (I´d had one 4 years previously which showed some significant damage) and my specialist knew I was trying to get it done. Anyway, my specialist asked me to ask for additional views when my PCP ordered my MRI. Which ocurred. Then I had an appointment with my specialist, brought the MRI CD and he just so happened to be meeting with Dr. Bolognese the next day and they reviewed it I was dx with CCI. Here are my sx / history related:

1. Severe car crash, severe whiplash (car totaled, rear ended)
2. Severe neck pain and migraines after car crash (6 years ago) - no history prior to
3. Being horizontal - laying down - relief of sx and upright worsens (and this is true for my POTS too but also for my neck pain/migraines)
4. I have EDS
5. Iḿ sorry, I can not remember if there was - oh yes -
6. When I last saw my specialist - I was sitting in my wheelchair and he came around behind me and cradled my head, my skull and gently but firmly lifted my head right up - and it felt GREAT
7. I feel like my head is a boulder that is grinding down into my neck pushing my neck down
8. Where my skull meets my neck on both sides hurts and has pressure all the time (though it can get very bad, there is a baseline pain/pressure)
9. My head just feels too heavy, too big and like it is pressing down into and compressing my neck. I do not describe or feel like a bobble head though, which is what I hear others complain of. I have not heard anyone describe it like I feel it. FWIW.
10. Even before my specialist had the CD of my cervical MRI, I sent him the report and there was so much damage and the herniations were indenting the thecal sac - meaning risk of CSF leaks and also of compression (so I think that confirmed his thoughts I may have CCI)

I think that is all I know right now...

Hope it helps.

Hope you get the help you need

 

[GypsyGirl]

Rotational CT scan question:

Does anyone know if CT scans always give a 3D image as standard practice, or if that's non-standard/a special request?

Googling is giving unspecific results. :/ When I see images from other folks' rotational CT scans for diagnosing CCI/AAI, they look to be two different categories - traditional 2D axial views, and 3D views. I just want to clarify if they come that way or specialists special-requested it.

 

[fredam7]

Does anyone know what is used in the fusion specifically? Rods? Screws? Biologics ?

I noticed a number of people having multiple surgeries . One said the PT made a false move and he had to get another surgery in the same area, another I think had a tethered cord and I'm wondering why that wasn't seen earlier or was it a consequence of the surgery and another spine surgery

There is a woman from Britain I believe who also had the surgery with the dr in Spain I think and she had to do it twice as she said it wasn't done correctly the first time

Why are there this many repeats or re-dos? Is anyone tracking this ?

But I'm curious what is being used for the fusion because there are biologics that were used in fusions that really damaged people, they almost stopped using it and then it re-appeared .

The history with this biologic is a true horror show . The dr's involved in the trials fabricated the data and were paid millions to do so , the biologic went on the market and many many many were maimed and killed .

My concerns are many but I want to put out this message about the biologic and I have very good reason and I want people to be aware . Maybe they're not using it or maybe no one is asking . It is important .

I have not seen anything regarding how these fusiins are being done specifically. It used to be rods, screws and a piece of bone from the pelvis but they used this biologic on top of it . Sometimes they insert a cage as it was easier to push the device through than a biologic but the biologic is in the cage on a sponge .

The biologic damages almost everyone . Causes intractable pain and many disorders so i just want to put that out there

I get the agony of the neck . I'm losing my hearing , my neck is torturing me , my head is heavy , my eyes hurt , when I turn my head I want to throw up, I get it , I can't breathe well either , my arms go numb and wake me up 100 times . On and on. I get the desperation . And maybe I'll die in my sleep from not being able to breathe. I don't know

I just want to put this alert out so maybe people discuss how the fusion is done exactky and that they are aware of the use of this biologic if it is being used . Does anyone know ?

The name is bone morphogenic protein made by Medtronic or it shows up as BMP on operative reports

I don't want to get into bmp because ill
Have ptsd meltdown . Used to be when you googled it , nothing but suicides and lawsuits came up. It went back on the market and now google looks different .

There was an entire issue of spine medicine dedicated to the dangers of this biologic that dr's were shoving into people's spines , often without the patients knowledge.

It's very common to be used in fusions but should never be used in a posterior surgery and not in the neck at all .