Doctor appointment and CCI

My hands are still hurting pretty bad so I've been limiting my typing, but today I just have to give you all an update!

I had an appointment this morning with a doctor, I did not know if it would be my primary care physician or someone else at the clinic, but it was an appointment anyways, mainly to discuss my positive experience on the Betamethasone.

I got a young doctor today who was doing her internship for her degree, she had been studying medicine abroad rather than here in Sweden and I have to say, her level was very very high!
It was the most amazing appointment I've had with a doctor! She truly "got it" and she was interested and really listened. While she was totally against continuous low dose of Betamethasone (and I understand it as it IS a steroid), we talked about things in general, the struggles people with Ehlers-Danlos Syndrome have when it comes to doctors and always having to advocate for yourself and basically know more than your doctors or you're screwed.
I also mentioned the issues I'm having with my neck and how it has been left as it is apart from having my Aspen Vista cervical collar. She looked almost afraid when I told her about my symptoms from my neck and how it affects my life, I also showed her an image from my MRI in August and she could also see what friends in Ehlers-Danlos groups and Chiari groups on Facebook has seen: There's something odd with my odontoid bone! Someone also mentioned that my Clivo Axial angle is not right. Now these are finds that indicates Cranio Cervical Instability also known as CCI, I also have a lot of symptoms that fits with CCI and it is sadly a common complication to Ehlers-Danlos Syndrome due to the weakened connective tissue. Now when a doctor has also seen that something is fishy with my MRI (and she's going to look at my images more) and literally called the radiologist at the hospital who initially looked at my MRI, an idiot, things may actually start to happen! The doctor I saw today is going to speak with her mentor/supervisor at the clinic on Thursday to discuss my case, and she's going to do all in her might to get me to a neurosurgeon at the university hospital so I can get a proper diagnose and hopefully a treatment plan and treatment! She was also pretty angry when I told her the best way to see Chiari is in an upright MRI, but that there's only one such machine in the entire country (over 500 miles away) and its resolution is really bad, it doesn't make sense at all that the three biggest university hospitals in the country doesn't have an upright MRI machine each, if the three biggest hospitals got upright MRI's too, that would mean one machine in the north (the existing one), one in the capital, one on the west coast and one down in the south. Like I said to her "We're over a thousand living with Ehlers-Danlos Syndrome in Sweden and CCI and Chiari malformation are common complications with the syndrome, and currently we can't even get proper imaging to properly diagnose those issues! Plus everyone else in the country who may need an upright MRI" Upright MRI also happens to be the best way to see Dural Ectasia in Marfan Syndrome, plus being beneficial for a whole range of other things as us humans spend a big part of our lives upright and things may look different while upright compared to supine.

I'm truly beginning to have some hope again when it comes to my neck! Maybe I'll actually get a part of my life back again if my neck is possible to fix!

Now the prospect of maybe needing a surgery fusing the skull and at least C1-C2 together, is freaking me out as it's such a sensitive and high risk area, but at the same time, such a surgery can improve the quality of life so much for a CCI sufferer by stabilizing the instability of the cranio cervical junction, I know many who's been through it and doing much better after their fusion than before!

I have a feeling this young doctor I saw today will be an excellent MD once she finishes all the internships. Who knows, maybe I even planted a small seed today so she will specialize in rare conditions? She did appreciate that I was so open (and she complimented me for being very positive despite my health situation) and giving her an insight in the life with a rare, chronic condition.

Okay, now my hands need a rest from typing again... But I really had to share this!