Chicago Chicago

I’ve been sitting here today trying to come to terms with my appointment Monday January 25th.  To decide how to put into words how I feel about what was said.  To figure out a way of saying what I need to say without spending all of my energy screaming, crying and cursing.  Because in the end, none of that does me ANY good. Not one bit. All it does is make my head want to explode even more than it already does. Even though I had been told repeatedly, not to rely on any of the Illinois neurosurgeons, I had high hopes.
 I think that I had higher hopes than I should have.  I expected to go to Chicago, meet with Dr Awad, for more than 5 minutes, and then have a clear cut direction to feeling better.   None of this happened.  Instead I feel like I am back at square one, with no real direction of where to go. What to do. Or at least I didn’t Tuesday morning.  By the afternoon, and after a very long conversation with a great lady from one of my support groups, I’ve come to the conclusion that I really need to try and see Dr Greenfield, and that there are organizations’ that will help with the costs of doing so, travel, lodging etc.  I’m hopeful this all turns out to be achievable so to say.
 I started working on getting in touch with all of the right people today, hopefully.  The people that know what route I need to take to make this happen, the people that know what I need to do to get started.  So tomorrow morning I will be calling Jordan at Dr Greenfields office and finding out exactly what I need to send to them, which scan, reports etc.   I have literally ONLY heard good things about Dr Greenfield, which makes me want to hope again, and yet, I’m scared to, because every time I get my hopes up they are dashed somehow.
So back to Monday……Shawn and I showed up early to our appointment, as we always do, because you see we know that a doctor’s time is both limited and valuable.  What would be really nice is if a single one of those doctors respected our time and saw it at all as valuable. So far, neither one of the two neurosurgeons that we’ve met have at all considered our time to be valuable in any respect. This time our appointment was primarily held with a medical resident, not even the actual doctor that our appointment was with.  Then again, we did get to finally see Dr Awad for the last FIVE minutes of our appointment.  That’s right, five freaking minutes.  Five minutes after five hours on the train, spending much more money than we had to spare to get there and back, stay the night, food and get around.  FIVE MINUTES.  Somehow, I feel that our time and the money that we had to spend were worth much more than five minutes.  It would have been nice if the doctor had felt the same way.   I understand that the doctors don’t know how much each patient is spending, I get that, but if you are asking where the town they are from is because you’ve never heard of it, and they are telling you that it took 5hrs BY TRAIN to get there, then I feel you owe them more than five minutes.  You can’t claim ignorance to the distance, time and money at that point.  You asked about them specifically and were told EXACTLY what they were, and still chose to only give us five minutes of your time.  To repeat what the damn resident decided. 
What is it that the resident said/did that made us so unhappy you might ask?  Let me break it down a bit for you….first of all the man spoke so quickly that it was hard to follow him, which is probably okay for most people, but not when you have cognitive issues to begin with. Not when you ask him more than once to slow down, and not when he’s talking so fast that all you get is his first name, and can only remember it because it’s the same as your husbands, and luckily the hubby saw the spelling on his lab coat.  So the residents name was Sean.  Sean the resident spoke too fast of course and knew nothing about Chiari it seemed except what was in a text book.  He kept telling me that I didn’t seem to check all the boxes he would want checked for a Chiari patient.  My headaches don’t ALWAYS present as Chiari headaches, which my response to that was, well no duh, I have migraines as well, sinus headaches etc, I was asked to describe ALL of my headaches, so that’s what I did.  Then he told me that he didn’t think that the passing out was from the Chiari, that they weren’t all true drop attacks.  Well no duh, I can sometimes feel it coming on, sometimes I don’t.  The ones I do know are coming on are more than likely caused by my POTS.  The rest Chiari, I wasn’t trying to say that they were all Chiari related, we’ve learned that on this journey.
 The main thing that I think Shawn and I have learned on this journey, along with our friends and family, is that no two Chiari patients are EXACTLY alike; most times there are very few exact similarities.  We felt that the resident expected to find a patient exactly like what is described in their medical books and journals, and that just doesn’t happen! I’m guessing that no two cases of any disease are exactly alike, and why he would expect that is still beyond me.  I feel like a lot of doctors still act like this is an extremely rare disease, and don’t get me wrong, in a way it is, but there are 1 in 1000 people affected by Chiari, with over 7 billion people in the world that’s over 7 million ppl affected, and they say that there’s even more affected than that! There are only 2.3 million affected by MS, and yet tons of research for it. Don’t get me wrong, there needs to be tons of research for MS, just as there needs to be for ALL diseases. There’s not nearly the research for Chiari, and the doctors don’t seem to care enough to learn about it, which is so disappointing to those of us affected by it, and of course to our families.

The jist of what I was told in Chicago is as follows, the doctors there don’t even consider EDS a real problem, meaning if they decide to do my surgery then I could reject whatever they decided to use as a dura patch, and potentially have fatal consequences. Not only that, he considers my 8mm herniation nothing.  That’s right, nothing.  He didn’t even address my Tarlov Cysts, even though; there they are, all up and down my spine.  He also once again suggested MORE pain medication, I’m sorry what else could they possibly want to put me on?  I’m on the strongest possible pain pills already.  I don’t want to get mixed up with pain management or start at the pain clinic.  I don’t want pain pills, and that just seems to amaze the hell out of these doctors.  When we asked him what he suggested for my completely straight C-spine, his response was Physical Therapy.  Physical therapy….the one thing that all of my other doctors have been against, my neurologist, Dr Hafez, my primary, Dr Love, my cardiologist, Dr E, ALL OF THEM.   Because you see, no matter what, there is nothing allowed to mess with my neck.  My massage therapist won’t even touch my neck or upper shoulders for fear of messing something up.  Literally at the top of one of my support groups it states “No chiropractors, No roller coasters, No trampolines or bouncy houses, No spinal taps / lumbar punctures / epidurals, No bungee jumping, No skydiving, No Willy Wonka Boat Rides, No nothing that can create a g-force or whiplash. No FOOTBALL. NO WRESTLING. No contact sports.
Yes, this crap can kill. Doesn't mean it will... but it can. This stuff is not taught in medical school... Most likely any old corner 7-11 neurosurgeon will not be good enough. And the name of a hospital does not give your surgeon any more clout than a brand name does a purse.
Yes it’s the Chiari causing those symptoms. Chiari does not like to play alone, but doesn't play well with its friends either. And if he tells you it's not big enough, ask him how big his dick is!
NEW to this Roller Coaster? You need a Brain MRI, a FULL SPINE MRI, a Tilt Table Test, a Sleep Study, and have your Eyes checked for Papilledema and a genetic evaluation for Ehlers Danlos Syndrome. If your doctor disagrees... fire his/her ass!
Also, any biological kids, parents, brothers & sisters... Probably a good idea to get them a MRI and check to see if their brains are fully encased by their skulls.”  I realize that may seem a bit intense, but the point is that this disease IS intense.  It affects EVERY single part of your life.
So for the doctor’s office in Chicago to not know the basics, to basically tell me that my herniation isn’t big enough, even though it’s doubled since my original diagnosis, and that Ehlers Danlos Syndrome is nothing more, and I quote “the disease of the week on the blogosphere”, did little more than piss me off.  The only positive of the entire appointment in my opinion was that I finally got a CINE MRI, which is used to observe and measure Cerebrospinal fluid.  With each heartbeat CSF is forced out of the ventricle of the brain, into the cisterna magna, and down the spinal canal. When the heart reflexes, the CSF flows reverse. The test can determine if, and how much a Chiari is blocking the back and forth flow of CSF between the brain and spine. So, if nothing else, Dr Awad ordered me that test.  And somehow, miraculously, they had a cancelation that day and I was able to have the test that very day.  Which in itself is amazing because they never have openings at the last minute, and if they do, it’s usually at the end of the day, or you have to make an appointment a month out because it’s the closest CINE MRI to me.  So, I would have had to travel back to Chicago for the test if I wasn’t able to get in that day. So, down to the first floor to lay in a machine again, with a mask over my face, strapped to a table, unable to move, and only allowed to swallow for 10 seconds at a time every fifteen minutes or so.  Apparently swallowing affects the flow somehow, so while they are actually running the machine, no swallowing for me.  I honestly never knew how hard it was to not swallow until I was told I was not allowed to. Go figure.
Soooooo Chicago was a bust.  There were positives, such as the chance to be alone with my husband exploring a city that we both enjoy.  We got to have some real life honest to goodness Chicago Pizza from Lou Malnati’s that was LITERALLY the best pizza I’ve ever had in my whole damn life.  I wish we had bought two or three to bring them home and eat again. We got to walk up and down the Magnificent Mile, explore all of the amazing shops, and eat some awesome food at The Artists Café on Wabash. We also went to a pub called The Burger Bar and I had a great drink called the Coney Island Boozy Root Beer Float that was AMAZING.  I also got to ride a train for the very first time, and spend time with my husband that wasn’t consumed with talking about the Chiari, actual time together, focused just on each other. It was lovely. 
Back to real life though, I am headed into my local neurologist tomorrow, we’ll see what he thinks about all this.  You see, he and my primary doctor, Dr Love neither one like pain medication, instead they want to try alternative treatments if possible, to find ways to manage the pain that don’t involve more pills.  Ways to treat the real underlying issue, not just the symptoms.  My symptoms are so widespread and at times seem completely random, yet when you put it all together; the trail always leads back to the Chiari. Always. 
We are in some ways right back at square one, but I really feel that we are at least on the right track.  We know that we can’t rely on just any old run of the mill neurosurgeon; we need a TRUE Chiari specialist.  We need one of the top ones, and even though I’ve been against getting help in the past, I’ve come to the conclusion that if I EVER want to feel better, if I EVER want the headaches to stop, the pain to let up, I can’t stop searching for answers. For the right doctors, and for the right treatment, and for someone that respects our time and efforts as much as we respect theirs.
 On a BRIGHT note however, I will be organizing a local walk for CCWAA (conquering chiari walk across America), the national group that raises awareness and funds. I REALLY hope that all of my local friends and family will participate as much as possible, and I may be reaching out to some of you off and on for support, help and encouragement. 
I know this blog was ridiculously long this time and kind of all over the place, so for that I apologize, I just needed to get it all out, and well this is how I do it. As always, if you have questions or concerns please feel free to ask away in the comments etc.  


Jessie Lea said…
Sweetie, I know it's hard. Hang in there. You are #ChiariStrong
Julie said…
EDS sucks. I can't find decent providers to even begin with. I am glad you keep pluggin along. Love you.
Misty Brown said…
lou malnati's is gross you should of went to satchels beef sandwiches instead
Kim Lilo said…
Goodness, sounds like a crappy appointment but at least you got time with the hubby. Let me know if you do a walk. Keep your head up.

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