Going to collate some gathered info from other sources, as well as externalising some introspective processing with regards surgery and declining health, here.
Oh, I know that sense of having paddled like mad only to realize you are almost at the falls and there is no turning back. Maybe that is too melodramatic, but we push hard for what might work because...what else can we do?
Not at all melodramatic for my taste - I actually laughed and murmured "exactly..." to myself while reading this. It was a perfect metaphor for a cliff's edge feeling that's been intensifying day on day lately.
And yes, that is also the conclusion I'm coming to when talking things through in my diary every day - "What else can I do?"
I have nobody else advocating for me, researching for me... If things continue to progress in the broadly linear way they have been the last five years, I recognise that this time next year, I simply won't be able to do these things anymore.
Pushing for these investigations might seem risky, or dramatic, or rash (as per feedback from loved ones), but what are my alternatives, at this stage? There isn't the infrastructure in place to catch me if I fall further. I won't say more.
Thank you for addressing this with such shrewdness and enthusiasm.
And then...neurosurgery? As a concept that 'works' (like it did for Jen and Jeff) so miraculously, we have to reach for it. But then confronted with realities, on behalf of our own bodies, and having the advantage of a number of people's experiences, there is some doubt.
Yes. Probably sensible to add that there appear to be variable degrees of surgical outcome, so far, and from what I've gathered, the majority of the M.E. fusion patients who've been kind enough to make themselves known here, have required minimum one additional surgery, either for post-surgical complications, or to address issues at another spinal level.
Which is something to take into account. I'm paying far more attention to the grittier parts of those few stories, of late.
A long hard road out of hell, would seem the best way to categorise it. What would I do without these pioneering accounts?
I suspect that severity makes a huge difference in how one holds the thing.
Precisely, precisely.
I've lately been tackling The Big CCI thread (on page 42 of 99 as of last night, and rather feeling the effort), and quietly noting that some of the divisions between the curious/questioning and the skeptical/more overtly afraid, and the circumstance / functioning level posters have shared about themselves.
To speak only for myself:
The stories of the first two M.E. fusion patients (only one having take the plunge at that point) were not something I was ready or able to process in relation to my own circumstances, at the beginning of 2019.
Denial and bargaining lasted many months since and I'm still cycling through those in miniature, most days.
Casting as dispassionate an eye as possible inwards, I recognise that there was a part of me that was relieved I had an acute health crisis in another area (gallbladder and liver), which set me back so completely for six months this May,
that I could ignore the fact an ear nose throat surgeon had just told me he felt he could say with confidence, that my auditory and vestibular symptoms were to do with some type of vascular insufficiency in my head and neck.
Because, I was so very unwell after abdominal surgery, what could I possibly do about that? Even the upper abdominal surgeons at the hospital weren't keen on operating on me with that hanging overhead.
And I think that's a sign of the seriousness of this process, that I considered probably the hardest health event of my life so far, as a displacement activity for what's to come.
That choice to deny, bargain and displace, has become less flexible as the year has waxed, and symptoms with it. Now my abdominal symptoms have eased off just enough for me to need to listen to my cranium again.
My body is telling me something and I am endlessly greatful I've at long last the tools to potentially interpret what that may be, thanks to others here. Even if the message I'm receiving from it is somewhat... horrifying (?). Especially then.
I think my recurring thought the last few days has been, perhaps I'm not There yet, symptoms wise. The point where the choice isn't a choice anymore; something which other M.E. fusion patients have faced. But the thing is...
If I can spare myself what comes next (so as not to be coy, I'm referring to central apnoea, extreme nighttime brachycardia, gastropariesis etc, of which three I already have very mild symptoms) and if it is confirmed to me by someone in the know, that that is /surely/, inevitably, what is coming next,
then, I see that I /already/ passed the point of no return back in September last year, when the true vertigo first began. An early warning of things to come.
Although I'm still working on acceptance, I know somewhere in my heart that I'm approaching, if not already toeing, the later stages of this situation, all symptoms considered.
With diagnostic wait times, declining health, and the reality that a crowdsourced surgical fundraiser could take far longer than is comfortable (or perhaps even safe) to yield results, I think I'm acting none too soon.
Or, so my self rationalisation goes, last thing at night. Perhaps I'm being a klaxon of doom, perhaps I'm seeing very clearly. It's hard to gain context from the thick of the woods.
It does seem, though, that if you have anything going on in your CCJ impacting your brainstem (and we all know this is a strong likelihood almost to a certainty) then this is a pretty compelling way forward.
It does seem increasingly to be so, and thank you very much for that affirming opinion (see comments above!).
The further I get into the CCI thread and comparing my experiences to those of others who've already been diagnosed, the paler the arguments of denial appear.
But....you are just gathering information at this point. And that alone is a huge undertaking, one that you need to focus on and get through in one piece. What follows may well be a choice. For better or worse.
/Thank/ you. I was very vocal in responding verbally to your comments while reading!
I may well be getting ahead of myself but it's a good idea to test out future realities and prepare, so as not to find myself incapacitated by the unexpected, if a diagnosis comes.
You've echoed a lot of things I've been saying to myself lately and it does me the power of good to have them coming from a source outside myself.
My family isn't aware of the next steps in these plans - I organised privately and came to them when all my ducks were in line, with a prepared speech about "maybe finally getting a diagnosis", which is something they most definitely want.
Shielding them from the full picture of what the result of such a diagnosis may be, has taken a lot of energy and resolve.
I appreciate the affirmation from someone who sees something like the full picture, very much.
It sounds wise to do no more than an hour with the collar. Good reasoning about time up and time up in collar. At least I think. I have been told no more than 4 hours a day in the collar by several sources, but since that might well be beyond your limits already, conserving neck strength seems smart.
Great, thank you again! The further I read through the CCI thread, the more often I have this confirmed.
One poster was advised by a neurosurgeon to wear a collar consistently in order to prevent further damage occurring, after reviewing their scans. Until I have such advice, I will continue as I am, and logging results.
Interesting though is another poster said they'd had a face to face meeting with the surgical team in Barcelona, and had been advised that wearing the collar consistently for a longer period and noting results would be a good conservative way of seeing if fusion might be something to pursue.
I haven't been well enough to repeat the POTS test again but I wore the collar for 50mins yesterday, and then again for 10 when I needed help getting up for nighttime teeth brush, due to head pressure / pre-syncope later, and had another truly out of the ordinary night with only one wake in a six hour period.
I'm starting to form a picture here, and am curious how 6+ hours of consecutive wearing -- even in a bit of an adverse situation ie the car -- might effect sleep on Sunday night before the scans.
My Philadelphia collar is a two-parter as well. I tried that initially and had the regular experience of getting it just right one day and feeling notable benefit and then getting it wrong the next few days and having more problems than plusses.
Right, interesting to hear you had a similar experience to mine!
Perhaps this isn't at all uncommon and it does make sense it happens this way, considering the pathologies we're talking about are often a matter of things being out of place by millimetres.
I had it in my head the Philadelphia was something of a continuous inflexible loop, which, on probing that idea a little further, turns out to not be my most sensible moment c:
The Aspen Vista strikes me as less 'wiggly' or variable in position than the Philadelphia, but it does seem to offer a host of positions and with the narrow range of movement (or lack thereof) that seem to be sufficient to trigger symptoms for me, I find that challenging. In fact, for me, there has been some distress in playing with the collars. I am generally fairly sanguine about stuff, but if it doesn't feel like I have it on right, I begin wonder if I am doing more damage.
That's very interesting to hear from someone who has tried both.
I actually found the Philadelphia was coming up far more in the CCI thread as something much sturdier than the Aspen, but it seems it's more individualised,
and there must be a particular benefit to the Aspen with regards generalised hypermobility (which seems to be applicable in my case) as it was noted it is favoured on the EDS forums.
Is the Philadelphia two pieces of rigid plastic, or does it have foam elements like the backpiece with the softer exoskeleton on the Aspen?
Four or so days in with the collar tests, I agree - small differences in both hardware and head positioning can really trigger unwanted symptoms. It is rather alarming.
I took heart from that poster passing on that Dr G and Co suggested trying it at home to note the results. It's seemingly not beyond the bounds of sense to use these collars at home, even if it feels a bit like riding without stabilisers, in terms of potentially doing more harm.
More frequent thoughts by thread participants were that the Philadelphia was considered to be more effective in stabilising, specifically cases of cranial settling, due to its comparative firmness and perhaps providing a small amount of traction.
I won't quote posters directly without consent / tagging them to comment, but a collar user quoted some text from an EDS/MCAS/Dysautonomia patient's site which summarised the feedback of five other posters well,
"Some neurosurgeons use neck braces for diagnostics. It can help to predict whether a fusion surgery is helpful or not.
The patient has to wear the neck brace 24/7 over a prolonged period of time.
If the symptoms get better or even disappear it is much likely that the patient will improve with fusion surgery"
My symptoms are not as severe as many, so unlike Jen Brea, who I think was having extreme and catastrophic reactions to turning her head, the changes that occur around my neck and head position and movement are unpleasant but a little more subtle. Thus, I find myself watching carefully and sometimes doubting my own observations.
It's all on a spectrum and while perhaps not all of us with strongly suspected or (partially/) confirmed structural issues are going downhill with this stuff necessarily (or are we? Can't speak with any authority here),
I'll say to you what I say to myself: preventative measures of some type are probably desirable, considering what we're dealing with here, and in which area of the body.
All symptoms are serious symptoms, and it's best to take them seriously. That's the slogan against self doubt.
@Malea if you were able to read any part of this extremely long post, I want to say that I am aware you are experiencing some of the very worst symptoms of this condition and that that's on my mind as I write.
I am not speaking of theoretical others flippantly, or not intending to. I know this is your reality and I'm right behind you.
No need to respond - I know how tough interacting with a screen is when lying down with heavy cranial symptoms.
Traction for me opens everything up. I am a little concerned that I am seeing diminishing results at this point (3.5 months in) but in general, I can see clearly, I can think, I organize my body, I feel a sense of personhood and agency, I actually feel my energy flowing more freely and have access to it. Pain of all sort is diminished to some extent. The effects seem to last about half an hour and then dissipate.
Oh how very tantalising.
I think I read you have devised a set up for home self traction (forgive me if I'm getting muddled - a lot of reading input from many sources lately), is that right?
Is it something you perform regularly for a little relief, as I would don the collar or take a dose of CBD oil?
Is there a focal point in mind in addition to that? some possible brainstem decompression allowing a little pressure relief for the area to heal each day, perhaps?
I recall marveling when I first put the Aspen on at what I had come to see as normal in my torso, particularly my back and shoulders. Hard to describe, but maybe it will make sense to you.
it was mind-blowing to sense that part of my body resuming the position it was intended to.
Yes this is a very familiar statement.
In my case, waking up with pulled muscles and the type of stiffness, soreness and strain I might have associated with having spent the previous day swimming lengths hard for an extended period, in a previous life.
And having to tiptoe to the bathroom on my lower joints, with (strictly metaphorical) fingers crossed there's no sprain, is the result.
Totally bizarre to have one's centre of gravity change so radically and the body just to reorder itself to fall in line.
There is more, of course, but I think I will stop here for now. I am going to experiment with my Aspen again today --inspired by your experiences--and will report back.
I could listen to this all day c:
Please do report back, if, when and what you feel up to.
