• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Is/was there anyone here who has had cranialcervical surgey?

Aerose91

Senior Member
Messages
1,398
I am aware of Jennifer Breas story but am looking for others who have gone down a similar path. My Dr is leaning heavily into CCI with me now after all treatments over 13 years have failed. I do, however, have almost all the same trajectory as her (mold avoidance, etc) and have a lot of occipital region issues.
I have been doing Atlas orthogonal for 3 years now and although sometimes I get a little benefit in calmness and increased proprioception, it hasn't given me any long term benefits. It seems, however, like I need to look more heavily down this path. I'm wondering what the status is on that procedure here.
 

Jyoti

Senior Member
Messages
3,365
There are a few threads (long ones, I am afraid) on CCF surgery.

If you have patience you could sort through them: https://forums.phoenixrising.me/thr...instability-cci-as-a-cause-of-your-cfs.56908/ ;

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/

https://forums.phoenixrising.me/thr...tested-for-cci-aai-chiari-stenosis-etc.76887/

https://forums.phoenixrising.me/threads/connective-tissue-problems.56788/

I too had some small benefits from Atlas Orthogonal, and still get a quick uptick from cervical traction. Have you had the MRIs and CTs done yet?
 

Aerose91

Senior Member
Messages
1,398
Thanks for sending me these. I have, in fact, gotten the upright MRIs and X-rays. It showed lowered CSF flow and increased pressure in the brain as well as frontal lobe atrophy.

What is your plan of attack, @Jyoti ? Are you following the cervical instability more? And which particular cervical traction did you do
 

Jyoti

Senior Member
Messages
3,365
It sounds like you have some identified issues that might really call for a surgical consultation. I think Bolognese did and maybe still does Zoom consultations if getting to him is hard, or if you aren't sure who to see.

I saw someone in Henderson's office a few years ago. I was really enthused and thought it might be the solution for me. The doctor I saw did spend a lot of time and looked at all my many images and did the calculations and said: yes, you definitely have AAI and you have borderline CCI, but you know--you are SO much better off than all of our patients here.

So...no surgery for me. I have to admit to being both relieved and disappointed. To have the miracles that Jeff W and Jen B had..... But not for me, apparently. I flirted with going to see Gilete a year and a half ago when a friend was in Barcelona getting CCF and also tethered cord release. But I don't think I am likely in bad enough shape for such extreme surgical intervention to make sense. Yet?

I have a Saunders horizontal cervical traction device which I find very helpful. I got to try one out at a PT's office, which allowed me to decide to spend the money on it. I use it most days, and when I am doing well, I forget.
 

Aerose91

Senior Member
Messages
1,398
I'm nit really up on the current people dealing with this stuff- it sounds like Bolognese is the best guy for it? Is he the one at Harvard?
I'm torn between it like you describe. Based on what Jenn Brea describes herself to be like when turning her head, etc, im not that bad. But I'm WAY worse in the psychological/mental stuff. The derealization and loss of feelings is horrid and 24/7.
So if you weren't bad enough for surgery, but are chronically ill, what is the fix for you? Have you tried PRP or other?
When you say the horizontal traction device is helpful, does that mean you have a reduction in symptoms when using it? I'm trying to find self-administered ways to test myself but I question if traditional traction devices are enough.
 

Jyoti

Senior Member
Messages
3,365
I am not totally up to date either. There is Bolognese on Long Island, Patel in SC, Henderson in MD/DC. I have a sense there are a couple more people doing CCF in the US in the last few years, but I can't recall names. And then abroad--Gilete and Hernandez in Barcelona (two practices, now, I believe) and also someone in India who I have heard is reputable.

Bolognese is the one who did Jen B's and Jeff W's (have you looked at his website? https://forums.phoenixrising.me/threads/connective-tissue-problems.56788/ in case you haven't seen it) surgeries, and I think Jeff still works with him on patient navigation or something similar.

Did the Atlas Orthogonal help with the psychological/mental stuff? It is so complicated--all the bits and pieces that need to co-exist and thrive in that small area of the body.

I haven't done much for my neck since being told I was well off! Sometimes I wear a stiff collar when I have a flare, I use ice on my neck whenever things get bad and that is super helpful (indicating some sort of swelling or vagus nerve dysfunction I would think), and then as mentioned, I use traction.

Traction clears my mind, sharpens my eyesight, lowers my heart rate. I can pinpoint the moment when things shift because my vision shifts into clear focus. For ways to test this out---I used to just pull up on my head and I would feel a bit better. When I was driving and felt awful, my daughter would reach over and lift my head from the passenger seat and I could access enough energy to complete the drive.

I also got a couple of collars as means to trial some manipulation to my neck. I have the Aspen J, I think, which is pretty stiff. And a Philadelphia, which is less so, but still gives some support. The Aspen lifts my head a tad and so I can tell--this helps. My cognition, my energy, my pain, my heart rate.

And I suppose you could order the Saunders or this one, which is actually the slighter cheaper and PT-approved model I have, see if it brings you any relief and return it if it doesn't?

Just some thoughts about how you could get some real life feedback that might help point you toward the next step.
 

Aerose91

Senior Member
Messages
1,398
@Jyoti Thank you for everything. I just contacted Dr Gilese tonight to see if they will look at my MRIs since they will do it for free.
Atlas adjustments havent fixed any of my worst symptoms, unfortunately. The psychological ones. What it mostly does is leave me feeling calmer and my coordination/proprioception improves. But those will go back in time. I had high hopes for this, but after years and thousands of dollars have been left disappointed.
I will look at the Austin and Philadelphia. I want to start doing something on my own to see if I respond. Do you know if anyone has improvement from a door mounted cervical traction device? I'm not sure how many mm that can decompress someone.
Again, thank you for all your help. A few yrs ago I believe I burned out and have had trouble prioritizing this but its something that can't take the back burner so I need to kick myself back into gear.
 

Jyoti

Senior Member
Messages
3,365
I just contacted Dr Gilese tonight to see if they will look at my MRIs since they will do it for free.
Well...that is a big step. If you want to move on this, then that is a great start.

I know that @mattie had CCF with Dr. Gilete. He might chime in. From what I recall last reading, he had indeed improved, from severe to moderate, I believe, though of course those are broad ranges. But POTS remained along with plenty of ME. (Please do update us @mattie if you feel up to it!)

I have a friend as well whom I mentioned above. She had both tethered cord and cervical fusion (C-0 to T-2). She is a year and a half out and while she went from VERY severe to nearing the top edge of severe, she is far from well like Jeff and Jen. She is totally housebound, and bed bound much of the time. She can now make herself a smoothie or other simple food and she can take care of her own hygiene needs. She is able to engage with screens to pass the time for much longer than she had been previously. But it has been a long haul and a lot of work and .....OMG.....money...to get these improvements.

I am not wanting to be discouraging. In my friend's case, this is a huge uptick in function. But it was a mammoth effort (for her, her friends who spend thousands of hours raising the money, her family who gave up so much to care for her, etc.) and it is likely just a good thing to consider the cost/benefit as you discover more about your own situation.

Also, there are a few Facebook groups devoted to this subject that might be worth your joining. ME/CFS + Brain and Spine is the one I joined and found somewhat helpful. Just this morning, there was a report someone posted from Gilete after looking at their images....

Best luck and keep us posted.
 

Aerose91

Senior Member
Messages
1,398
Thank you, I appreciate it. What you speak of scares me, though. The idea of living with a cervical fusion when it doesn't deliver enough result to make you well again. It sounds like Jenn Brea and Jeff has the invasive cervical traction done first and that was their indicator that they cam achieve full remission. I wonder if @Daffodil and @mattiehad that prcedure done, as well? And if so, did the effect from traction mimick that of after the surgery?