After a week of a relaxing "time-out" in Florida, today I hit the ground "running", sorta.
First up, I saw my pain management Dr. I like him, he thinks about things. He wants me to go to Mayo Clinic. This fall we did a stimulator trial in my head. It was helpful, but due to a bleeding disorder, I am unable to have it put in the epidural space like a normal person would, so the leads do not go to all the places that they could, so much of the pain remained untouched during the trial. As we moved forward for the final implant, I had several MRI's done, because MRI's can not be done after a stimulator is implanted.
1. My neck. I just had ACDF surgery on C4-C5 in February. Surprisingly, the next level down is now listed as "obliterated" on that new MRI report. So now, I have an issue that surgery won't help at the skull level, craniocervical instability, abnormal atlanto axial angle, and an issue at the first unfused level, C5-C6 down to T1.
2. My knees. This has been a life long issue, after 4 knee surgeries, dislocations (with a nod to Ehlers-Danlos Syndrome), falls, limitations, etc. Well, not surprisingly, the MRI's clarify, they are both awful, congenital dysplasia, severe chronic subluxation, where the groove of the joint should be, I have a huge bump of bone, all cartilage is gone - bone on bone, I asked my Dr if it should just say "both knees - smithereens", and he said yes. I explained to him how congenital dysplasia is due to Klippel-Feil Syndrome. I had read about this, and sent a tweet to a knee surgeon with a view of my scans, to verify this earlier this year, and was told yes, that is what it was. Scary that we have to dig up the information ourselves. The knee that I told the Dr today was the "better" one that I rely on, he tells me no, actually that one is worse, don't rely on that one! Ha.
Ok back to Mayo. My Dr wants me to go there, to find out more about the bleeding disorder, which has been diagnosed as Von Willebrand Disease but the treatment used has never helped me, so he wants more info, which I understand and have questioned in the past. The last round of injections he did for my chronic debilitating head pain, resulted in 2 huge black eyes, due to blood pooling. He can not do any epidurals to help with pain, and does not feel comfortable with any further lumbar punctures until we know more. This info could greatly impact my pain treatment paths, telling us what is safe and what is not. However, I have to stop another 2 medications that keep me from bleeding (as a woman), for two weeks prior and during the trip/duration at Mayo, so the whole ordeal is less than pleasant.
He wants me to see Neurology to rule out Intracranial Hypertension, which is more tricky since the lumbar puncture is not allowed. He wants them to look at other neurological items that could be contributing to the symptoms as well.
But here is the thing. Mayo Clinic does not address, acknowledge or treat Klippel-Feil Syndrome. So Neurology will not deal with it. They will avoid it, and say nothing about it. KFS is invisible to them.
I told him this when he first suggested Mayo. I knew this was the case. He studied there and did not understand why. Sure enough today he said I was correct.
I am outraged. Having a patient who has been to 5 states and countless specialists, go on another extended trip for healthcare, to spend more money that I don't have, to sit in exam rooms, with a team of world renowned Dr's....while the BEAST that is Klippel-Feil Syndrome is right there, along with it's grimy buddies (associated conditions), and ignore the very thing that has caused all the issues, is a cruel and hellish position to put a patient in.
I do not know, at this point, if I can do it! I can't just sit there, again, while they blow it off and tell me KFS is nothing. What kind of healthcare is that? Just because you don't know anything about KFS, because it is rare, does not mean it is not causing major issues in my life! I know better. I am fearful of what will happen if they do that.. I might just completely flip out! I know countless adults who are dealing with this same crap every day! This is an injustice! We matter! We have lives and dreams! Yes I am yelling!
But who do I write to now? Do I write to Dr's at Children's Hospital of Philadelphia, or other well known pediatrics centers that treat Klippel-Feil Syndrome and offer a team, and multidisciplinary care, who listen to parents, and see their concerns and help them, and say "We have a huge problem here, today's kids are dumped into the dark abyss as adults, and how can we change this? Who can help adults that are in the eye of the storm today?"
The gap between care for children and adults, for the same condition, is a kick in the gut. My gut. Your gut. What do we do? Do we make one letter and do a mass mailing to the top Childrens Hospitals? What is our plan of action?
When I sit in Mayo and I implore them to please embrace KFS patients, get a grip, and learn about it, they will say it is "nothing". Well, that is crazy... it is something! We need treatments and compassion, not a brush off!
I am typing randomly here, but something MUST be done. WHAT?
But as life goes, after my visit, which, by the way, included another referral to a knee replacement surgeon, for 2 knee replacements at age 43, which I have already been told is a no-no for me, I had to turn all of this off, and go to work. I love my job, but, trying to function normally, as my body freaks out, and has relentless pulling and pain, and present at an important meeting, and then drive home thinking again, about this!
Tomorrow is Work, then seeing my Neurologist, who is also great, but does not think Mayo will get me anywhere. We are sitting down to write a letter regarding my limitations, for disability, he is signing my medical marijuana paperwork, and then I am heading home to pass out. Life is so different now.
Sometimes I truly feel I am trying to navigate a ship I cannot steer.
~Wolves and Ravens
Pressing on.
Best,
Sharon Rose
P.S. I am now advocating at Klippel-Feil Syndrome Freedom.
Join me!
https://www.facebook.com/KlippelFeilSyndromeFreedom
