Hi Katemc,
I developed a 7mm tonsillar ectopia after being rear-ended in a car years ago. It caused all kinds of crazy symptoms. Some of which I managed to reduce by completely changing my work and what I did day to day (which it sounds like you’ve already done by giving up your work) and some that still come back to bite me. I’ve learned to manage these to varying degrees.
I’ve been tuned to potential treatments for this for a long time and I can’t say I’ve come across a sure fire way to fix the problem. However I have come across quite a few different things which helped me get a lot of my life back to where I can manage it now.
I know that these kind of problems can be very different in different people. Your issues will be different to mine. My gut feel is to say to you don’t jump into having surgery to try to fix any problems just yet as there’s quite a few people out there who’ve had short term surgical gains but long term misery. The reason why I say that is because it’s only been several months since your accident. My problems were in a state of flux for years after mine.
At my lowest ebb I considered ending my life as the issues got that bad. I never made any inroads into going that way, but I was weighing up my options if the issues I had at the time couldn’t be addressed or at least partially addressed. I’m glad to say that through self help that I have managed to get on top of quite a few of them, to where life’s worth living again. The UK health system has been next to useless and I’ve even been ridiculed in it. Sadly their view is if they can’t see it then it must be fake/not present.
So, in the name of self help, in no particular order…
“As a past kidney donor I am left with the inability to take any NSAID medication”
Check to see if topically applied NSAIDs are still viable for you, rather than NSAIDs in tablet form. I’ve found the Ibuprofen Gels to work quite well.
Almost in passing you mentioned ‘my jaw catches’. Catches on what? Have you looked into that? Do you have a Temporomandibular Joint (TMJ) problem? Some TMJ problems can be symptomless but some can bring serious problems. Do you have any change in your bite post accident or any gap or uneven gap in your teeth left to right, or teeth which come together on the rear molars before the front, when your jaw is closed?
A friend of mine had an accident at work where he fell backwards off a ladder and flat on his back onto to a solid floor from a height of about 6ft. His TMJ problem was initially missed and is now known to be responsible for some very problematic issues. Some of his symptoms are similar to ours.
“and a funny pain in my hip”
I have come across people who have had an issue in their lower back/pelvis which they haven’t been especially aware of but they were compensating for by subconsciously adjusting their neck. The human body likes its eye to be level, and so the body sometimes compensates for imbalances elsewhere by changing the neck position. That can add to neck issues. Your PT etc will be able to shed more light on that.
In my experience I often benefited from staying mobile. Sure, there’s times when I can’t keep going and need to rest but often I often benefit from small regular movements which keep my neck in a roughly straight and upright position but slowly and slightly mobile. Vacuuming the house often helps my neck - there’s no extreme rotational movements but just continual tiny movements. I found early on that wearing a neck brace made things worse. However still to this day putting my fist under my chin when I’m sat in a chair often brings subtle relief. I also discovered that my new default head position for least issues is slightly off to the right, off centre. I discovered that when watching TV as a distraction one night and the TV was off centre to me. The following day I had a better day. It happened often enough for me to spot it. I also discovered that the best position for my head vertically, if not in bed, is with a slight downward gaze.
Here in the UK our National Health Service (NHS) don’t routinely MRI people for rotational misalignments on cervical vertebra, or look for ligament damage. Worse still their brain scan doesn’t image low enough axially and their cervical spine scan doesn’t image high enough axially. It’s almost like they deliberately don’t want to know about the issue. I have at least 2 damaged ligments in my neck, which, at a guess have probably caused the rotational misalignment in C1/C2. One of them is the Alar ligament which potentially offers an explanation as to why I have issues when rotating my head one way, issues which can persist for minutes/hours/days. Though discovering that hasn’t led to a treatment path due to the issues and risks of operating on the ligaments. But at least I know where some of my issues lie.
“constant headaches taking me anywhere from a daily baseline of 3 to a 7-8 in an instant,”
Sometimes we can’t figure out what it is which makes thing better,however sometimes when we come across things which makes it worse we can use that to figure out how to make things better. i.e you become aware of a stimulus which effects the issue for good or bad and so may hold the answer as to what causes it. So can you pot your finger on what it is which causes your headaches to suddenly get worse? That sudden change is interesting. Is it head position? Change in position? Angle? I know it’s easier said than done! Sometimes the realisation of what causes it dawns over time.
Sometimes minor tonsillar ectopia can cause major flow issues with Cerebrospinal fluid (CSF) and major tonsillar ectopia can cause minor flow issues. You mention ‘pressure in the head’. Have you checked this one out? The investigation would be a ‘CSF flow study’ usually done in an MRI machine. I also know somebody who has a lot of headaches especially after standing, lying down and at many times in the day. She doesn’t have tonsillar ectopia but she does have hEDS and many of her muscles have ‘low tone’. It’s something that we are still trying to get to the bottom off but I think it demonstrates that such headaches can be caused by weak muscles in the neck. She also has a lot of neck pain and pain around the crown of her head which seems to suggest C1 issues.
Have you tried TENs machines? You’d have to be careful around the neck, so go easy, but they work well for some people.
Have you tried to strengthen the muscles in your neck? This idea comes from the premise that the tonsillar ectopia is now present / causes a problem, yet all the components of your neck are still present and were before the accident…so what changed? I have read that the ectopia develops because the injury has caused the neck muscles to weaken and so don’t support the neck as well any more, allowing the tonsils to drop. I don’t know for sure but the explanation makes sense to me. Often in any muscle strengthening regime you have to get the muscles to stop spasming before trying to move forwards with that. Easier said than done at times. And in any regime its important to maintain balance left to right and front to back in any training. The head is a very heavy lump wobbling around on top of your neck for it to be on an imbalanced system.
I’ve always been one for wanting to know how stuff works and being driven to find out. Out of desperation for relief I started with the premise that something in my neck wasn’t in the correct position, and that the impact of the accident had changed that, and was it possible to do something about it. I needed a way to investigate it, because the health service in the UK had never even started to look into it. I began pressing on the back of my neck, systematically, in different places to see if I could move/effect something.
I discovered two things. The first was that if I got my hand and gripped across the back of my neck at base of my skull and attempted to squeeze my neck I could sometimes get some relief from symptoms. It didn’t always work, but it was a start. I was using the bottom of the palm and the tips of my fingers to exert the pressure either side of the my neck.
The second thing I discovered, and has been more successful, is that if I press (or even better get somebody else to press, as they can exert more force for longer) on the back of my neck, at just under the base of my skull on the left hand side I can usually reduce the symptoms, or halt/reduce a flare up of symptoms. When they press I concentrate on sitting in a chair with my neck straight and I try to stretch my neck by extending it up vertically while they press with their thumb about an inch or so away from the middle, right under the base of the skull, sometimes quite hard.
Pressing at that position in some ways isn’t surprising as this is at the level of C1/C2 and that’s where almost all of rotation of the head happens and is also one of the points of weakness in the cervical spine. I also have a rotational misaligned C1/C2. C1/C2 are very vulnerable in a rear shunt accident. They are completely different to the rest of the cervical spine because of the unique movement job they have to do.
Sometimes the beneficial effect of pressing is immediate, sometimes it kicks in after a minute, in 10 minutes, in an hour, in several hours, the day after after I have done it. I often know it’s going to have an effect because immediately after the pressure has been applied I begin to feel very tired. Tired in the same way as when I’ve just had a body massage and the masseuse says that it’s due to ‘toxins being released’. Sometimes I do it late at night and then sleep it off as I literally can’t stay wake. The other effect it often has on me is that it causes my eyes to water, sometimes a lot!
When I explained this to health professions most of them looked at me like I was stupid. Many of them didn’t seem to understand that actions one day can lead to pain or relief the following day. And they only seem to be able to talk in metrics of pain. There’s no tenderness in any external part of my neck (but I am 13 years post accident now) but when I think back the only external tenderness was just after the accident. The discomfort and agony has always been internal to the neck for me.
If you’re going to try it, go slowly, and gently, and be systematic in your search for the spot which may help you. Literally divide up the back of your neck into a grid, either side of the cervical spine from the base of the skull to the shoulder, and either explore it yourself or get somebody to help.
When I go to sleep, at the point of lying down I concentrate getting my head and neck into a position that mimics my head and neck being completely straight when I’m standing upright. i.e. on the point of going to sleep I feel no force either way on my head/neck. I need to get my shoulder into the mattress to do that and water bed helps a lot here. With a feather pillow that’s not too high I in effect have a mattress and pillow that’s one continuous layer. I’ve also found that lying on one side is essential for me. I used to like to sleep flat on my back but after one exceptionally bad episode with my neck while doing so I can’t do that any more.
Hopefully you’ll find something in these ramblings which you can make use of 
I wish you all the best.