ArcaneM37
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After nearly three years of effort and eight and a half years of illness, I am finally approved for spinal fusion surgery!
I am having my skull and top two vertebrae fused together so they can no longer move. It will look something like the above picture (not my xray). I will have little to no range of motion in my neck after, but that is a small price to pay.
I have a condition called Ehlers Danlos, which only got diagnosed 6 months ago after 8 years of illness. It causes the soft tissue in my neck (and other places) to be too lax. This allows my bones to move in ways they should not. This movement compresses the brain stem and spinal cord and can cause a whole host of bodywide issues. These varying bodywide symptoms are often collectively called chronic fatigue syndrome. This is the diagnosis I have functioned under for most of my illness.
I have 35 distinct symptoms, but I won't bore you with my life story about how they all developed over the past 8 years. At my current point, I am bedbound and can only make it to the bathroom. I can't even eat dinner with my family. I am in pain constantly, and always tired, but often can't sleep. It's been a miserable existence. And it would only get worse without this surgery.
Because chronic fatigue is stigmatized and doubted, and because the connection with neck instability was only made less than a decade ago, most neurosurgeons will completely disregard patients like me. I was completely blown off by 4 local medical groups including the University of Wisconsin system. They just don't buy into the idea that instability can be caused by illness instead of injury and they stop listening completely when you say "chronic fatigue".
Five doctors in the whole world take this condition seriously and are willing to help and understand, but none of them makes it easy. When a phone call saps your energy, a cross country trip is nearly impossible. But after two years of trying and two cross country trips, one of them finally approved surgery for me!
I'm going to get better!
MacKelvey
My ex has EDS. I wish that cheating POS nothing but pain and misery
ArcaneM37
Have you considered taking your bitterness elseware? Im celebrating here.
wibbIywobbIytimeywimey
ArcaneM37
I would like to maintain control of my arms please lol
VampireTeaParty
Holy shit dude. I've only seen this done once in all my years working in trauma & emergency surgery. I hope it goes well! Best of luck throughout your recovery!
ArcaneM37
Yeah so imagine how hard it is to get when you don't have trauma or injury. This has been a hell of a journey.
GoatRodeo
Good luck OP
peastream
I had 3 vertebrae fused (lower 3 before my 'spine') a year ago. MRI showed neck bones cutting cerebrospinal fluid to parts of my body. Lots of PT afterwards but it was worth it. No more migranes, mood swings or numb hands. Some flare ups time to time, but definitely a quality of life improvement. Best of luck! Take it easy!
ArcaneM37
I'm so glad. I have heard of a few people who had this instability lower down. It is much clearer and easier to diagnose because the symptoms are all in the head and arms. The problem with my location is that it compresses the brain stem, so every part of my body is affected. It took me a year and a half to even diagnose myself with cfs (after over a dozen docs failed to diagnose me.)
I'm so glad you got relief and thanks for the good news. That always helps.
peastream
The 'ruling out what's NOT wrong' is the toughest. I went through about 4 specialists before locating the issue. I even got off some anxiety meds since the surgery. It isn't perfect, but its manageable. Again, best to you! Have a good recliner to use for post surgery too.
DJjohny
Neat... Another thing i can add to "i propably have that" list
ArcaneM37
But seriously if you think you have instability, getting help is hard. Start here https://www.facebook.com/groups/MECFSBrainSpine/?ref=share&mibextid=NSMWBT
ArcaneM37
That's how my life has felt for the past 8 years. Me/cfs, fibro, mcas, pots, eds, cci, aai, the list just keeps growing.
DJjohny
Getting help for anything is hard... My doc doesnt want do deal with shit thats too complex or out of his field. Unfortunate problem is you need recomendations to get help from specialists.
ArcaneM37
My doc sometimes draws conclusions that a specialist later contradicts, but from day one undiagnosed and vague symptoms, he has always been willing to send me to any specialist I want and run almost any test I ask for. Nit many docs can help you, but if your doc won't let you try to help yourself, the best thing you can do is find a new primary. It's essential.
DJjohny
Also while i do have bunch of these symptoms none of em are cripling... Yet :D but good luck to ya and i hope it helps.
ArcaneM37
For some it is mild for the rest of their lives. For others like me, it gets really bad over just a few years. Some find relief for days at a time from an hour or two in a neck brace. Some don't. Brain stuff is never consistent.
0570
Unfortunately I'm very familiar with EDS, I've got a LOT of symptoms myself but it's my wife who sees patients with EDS on a daily basis. There are even a few who've gotten most of their spine fused, from what I've heard the results are mixed, while it effectively eliminates a lot of motion, it does not prevent the ever present discomfort, if anything it adds another challenge factor.
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ArcaneM37
But in the cases of craniocervical instability and altantioaxial instability, it is proven helpful and even curative for some. The problem is that these instabilities cannot be seen on standard scans. And even after getting the right doc to order the right scan and confirm the diagnosis, local docs still wouldn't acknowledge the instability or my glaringly obvious disability caused by it.
0570
There's multiple factors to their reluctance, but the two primary ones are lack of in-depth knowledge on the part of the doctor, but also accountability. They don't go into procedures they know little about because they will be held accountable for the outcome. I've heard first hand from clients who hit ALL the EDS checkmarks but the doctor would not officially diagnose it as such and just labled it as general hypermobility and/or fibromyalgia.
ArcaneM37
In a perfect world, they would then seek to get the knowledge you need or at least refer you to someone who has the knowledge - not just tell you nothing is wrong when something clearly is.
ArcaneM37
For me the neck pain is just one of many symptoms. When I sit up in bed, the weight of my skull causes my vision to blur my balance and coordination to fail and my anxiety to soar until I lay down again. If i look back at 4 years ago when i could still walk and go out to eat. I would say maybe not worth the risk, but at this point, I am literally dying. This surgery is my best and only hope at having a life worth loving again.
0570
Have you gotten an official diagnosis? Do you know which specific type of EDS you have? From what I'm reading, here in the netherlands you'd qualify for special housing, a custom-built electric wheelchair and home care.
ArcaneM37
Yesh the doc who is doing the surgery is one of the few specialists in eds, and he diagnosed me. I have not yet had genetic testing to rule out the vascular type. Most people with the hypermobile type dint show up at all on the genetic tests.
On one hand it sounds good to be in the netherlands, but the nearest doc that actually treats this would be in spain, so ill stay here. I complain about the long trip from WI to DC for treatment, but really i am fortunate to be in a country that has a doc.
0570
Give it time, there is an awareness growing, EDS is much more common than you'd think but most doctors and even specialists are unaware that certain symptoms combined equals EDS. We're seeing 6-10 new cases every week. The one doctor here that does the official diagnosis has an almost 8yr waiting list
ArcaneM37
Right we have one eds specialist in all of WI and his wait list is two years. Change is too slow.