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

[Aerose91]

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]

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]

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]

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]

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]

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.

 

[Murph]

@Daffodil did it. made her worse I believe.

 

[Aerose91]

Really? Did the doctor fuse her in a decompressed position? @Daffodil

 

[Aerose91]

@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]

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]

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?

 

[Daffodil]

I will say one thing. Unless Dr. Bolognese or Dr. Goel says you have CCI, do not mess with your neck. I made that mistake and will pay for it forever - in spades. On top of still dealing with ME/CFS. Be very careful joining those groups too because, as all groups, it will become an echo chamber and you will, if desperate enough, become convinced you have it.

I actually had C3-C6 fused.

Dr. Gilete wanted to fuse me from C0-C6. Turns out I needed NOTHING. Even though some always trustworthy chiropractors (LOL) were only too happy to diagnose me with every neck problem known to man

I am in another echo chamber now anyway but its a Millon times safer than the neck one, even though it involves squirting strangers poop up your butt

 

[Aerose91]

@Daffodil Thank you for replying, I'm so sorry this happened to you. And thank for the heads up on Dr Gilete, I sent him my photos but still haven't heard back. Do you trust Dr Bolognese's opinion?

 

[Jyoti]

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.

I'm in exactly the same place myself. I investigated, did AO, got a Saunders traction device, saw an associate of Henderson's. Then...COVID hit and everything stopped and I put it on the back burner. Now.....I have what I am pretty sure is intracranial hypertension. It is new magnitudes of awful. And I am guessing it is caused by compression of internal jugular veins. Which apparently can easily happen if a. you have cervical irregularities and b. connective tissue problems.

I've recently had extraordinary relief from a really excellent osteopath. Thing is--ALL my symptoms go away for a period of time (24-48 hours) and then come rushing back. I am inclined to believe that this supports my sense that there is pressure put on some internal structure by misaligned cervical spine bits, and the treatment, like AO, puts my neck back in alignment. However, since my ligaments are 'incompetent' these adjustments do not hold. Which leads me to think more about PICL with Centeno-Schultz.

Let us know what Gilete says. I am eager to hear.

 

[lenora]

I had ACM (Arnold-Chiari Surgery) many years ago. I don't even know if it's being done today. I was fortunate, and found great relief. I never returned to my former self, but a lot of pressure and certain pain was relieved. Lyrica relieves the horrible pain I was in for years, thankfully.

I also saw Osteopaths...and if you can find one who does nothing but myofascial or acupressure, then I would give it a try. I've had a few...things change, people retire or die, but I do recommend them. Not someone who also has an ordinary medical practice, but someone who specializes in what I mentioned before.

Chiropractors may be fine for some people, but the one I went to (early on) left me with greater damage and repeated the same thing over and over. A waste of time.

Osteopaths can also help with vitamins, herbs, etc., and you can learn acupressure to use on yourself...I found that helpful. Unfortunately, they can't help my sleep disorder....it seems that no one can.

Good luck and keep trying to find someone who may help. Yours, Lenora

 

[Aerose91]

@jyotiSo you have a period of total cessation of sympoms from your osteopath but had no relief from atlas orthogonal? What is your osteopath doing? Ill try anything that isnt overly invasive or permenant.

 

[Daffodil]

@Daffodil Thank you for replying, I'm so sorry this happened to you. And thank for the heads up on Dr Gilete, I sent him my photos but still haven't heard back. Do you trust Dr Bolognese's opinion?

Yes

 

[Jyoti]

So you have a period of total cessation of sympoms from your osteopath but had no relief from atlas orthogonal? What is your osteopath doing?

To be honest, I had a near total cessation of symptoms from Atlas Orthogonal the first time. For four hours. The next time it was two hours and soon it was ....nada. With manual osteopathy, I had a cessation of 24-48 hours, but it was with one doctor only. I have seen numerous osteopaths whose treatments make me feel relaxed and a bit looser but do less than nothing for the ME or the cervical spine manifestations.

I wish I thought that osteopathy could fix our problems--yours and mine and everyone who shares them--but I suspect that because of connective tissue failure, these various adjustments to the spine and CSF flow give us a taste, but one that the body cannot hold on its own.

For me, these treatments affirm that there is something in that area related to compression that is causing symptoms. I think now that in order to make anything 'stick' the connective tissue has to be either improved in its tensility (as with regenerative medicine) or made less important (as with fusion).

But as @Daffodil points out, it is tricky to know if issues with the cervical spine (or any part of the spine) are causing the problems we have. I think most of the surgeons we are discussing do invasive traction to assess if fusing in a decompressed position will alleviate those symptoms.

And....I have had a lot of pain and dysfunction in my lumbar spine and SI joint in the last couple of years and have thus read quite a few papers on surgeries of non-cervical areas of the spine. My take-away--almost no one knows anything. (Surprise?!!!) The correlation between imaging findings that lead to surgery and successful surgical outcomes is less than 50% in many studies. It is a hit or miss thing in the lower back, so why wouldn't it be similar in the cervical spine?

All to say--I know fusion has been a life-changer for some (in a good way), but I am pretty leery. Not utterly opposed, but it would take a lot of convincing to get me to do it.

Where have you landed @Aerose91? What is happening?

 

[almost]

For me, these treatments affirm that there is something in that area related to compression that is causing symptoms. I think now that in order to make anything 'stick' the connective tissue has to be either improved in its tensility (as with regenerative medicine) or made less important (as with fusion).

My new neurologist is convinced I have a lot of compression, and that it is the cause of my symptoms.

I had dismissed CCI and the related things earlier in my search for answers, but now I'm right on the doorstep looking at this as a real possibility, and it's more than a bit intimidating.

The Atlas Orthagonal stuff doesn't seem like a long-term answer, and putting myself in the hands of a surgeon to make things work seems like a gamble too. I have to sort it out, and this thread is and will help. Thanks to all contributors.

My problem is time -- I'm getting less able to walk and move around each month that goes by. Doing nothing or analysis paralysis isn't an option either.

 

[JelenaS]

On facebook you can find groups related to Craniocervical instability and the treatments people tried, and also one about PICL (stem cell) treatment for CCI specifically. I am a member of those two groups and people are healing with PRP and stem cells.