September is Chiari Awareness Month!

Well-it's Chiari Awareness month! My goal is to post one awareness image on FB each day for the whole month. Hopefully people will get a little information and maybe even share! I am also attending the ASAP Walk and Roll on the 21st. I am excited for that. At the walk I held in June, I didn't get much walking done since I hosted it so I am looking forward to meeting people and walking for a cure.
I am feeling a little better since my last post. My head still hurts every day. My back is really bugging me where I had the spinal taps. I am not sure if that is normal. It feels really stiff in those discs when I attempt to bend over. Believe it or not-I called my surgeon 2 days after my ER visit...they have still not returned my call!!! I haven't made that easy for them either. I have called there at least a handful of times since then and left nice messages and mean messages and "you have got to be kidding me right now!?" messages and still nothing. This is frustration on a whole other level. I really like him as a doctor but if he can't return a call do I really want to count on him to cut my skull open and follow through with all of the care that comes after that?
It is so frustrating to find a doctor, I don't really want to start over. I had a hard enough finding him and I am still struggling to find a Neurologist who will treat me with pain management. I have actually been told that they don't treat CM/SM because they are "surgical only." Anyhow, the stubborn side of me wants to tell the surgeon to take a hike but the other part of me was really counting on him to help me. I just wish I knew what the future held.
One other new thing that has started is this bizarre crawly/tingling sensation that runs from the top of my head on the left hand side and down my cheek to my jaw. It comes and goes but it sticks around for a while. After ten minutes or so if just feels numb. You would think that would trigger a phone call back from the doctor but it has not.
For now, I am going to promote this month of awareness and hope I can make it through October before deciding on a Surgeon/Surgery/etc. My family and I are taking a trip to Disney for Halloween. I need this vacation more than even I know. After that I will give into this Chiari/Syringo beast. Until then I will kick and scream through it and think about the consequences later.

Just Keep Swimming...

I know it's been a little longer than I'd have liked, I have been recovering since my ER visit. It has taken me a while to regroup. I spent a few days on pain meds because my head and back were killing me. The headache is gone for now but my back is still really bothering me where my spinal taps were done. I don't know if this is normal either but I get this strange cold, almost wet sensation on that spot but when I touch there it doesn't feel like either of those things are occurring. It must be a little nerve damage but I am not sure.
So, so far- after reading reports and a visit with my PCP I have been told that I have "tiny calcification in the brain" slightly elevated white blood cells in the CSF and air pockets in my skull. None of those things were explained all that much and were shrugged off as incidental. Isn't that ironic!? So many CM/SM patients are told that these are just "incidental findings." Me-I am calling their bluff! I was told by a good CM/SM friend tonight to try not to obsess over the internet and research.  I know she is 100% right but it is so hard not to when the people who are supposed to be professionals tell you nothing or don't take you seriously. Well when I searched these "incidental findings" I found that brain calcification occurs in elderly patients which causes them to forget (I am 28!) I also read that elevated white blood cells could be autoimmune disease and air pockets around the brain means trauma and could require a medically induced coma! Needless to say-I will read no more. I am sure that none of those things relate to me but it's hard to know when these physicians are right or wrong when you have been misguided so many times. I am trying to not be a Web MD junkie and hoping that my Neurosurgeon will return my call soon so I can find some peace of mind.
For now, I know that decisions need to be made in the near future, I know that I can't continue the way that I have been and I know how difficult it is going to be even when I do finally decide  either way but in the words of Dori, I am trying hard to "Just keep swimming."
This is it for now. The kiddo's start school tomorrow so we need to get to bed but I want to thank you again for reading. I hope this helps you as much as it does me. We have to be in this together or who knows where we would be!

Trip to the ER

So, I don't know how many people actually read this but writing it helps me vent so- here it goes. Friday night my daily headache sky rocketed to a debilitating mind numbing pain. Typically, I can take some medication, lie on a heating pad in a dark, quiet room and try to sleep it off. Not this weekend. By Saturday morning I had barely slept and could not think or move without feeling stabbing pains. I asked my husband to take me to the ER. Now, it's been 3 years since my initial diagnosis and I have not had an ER trip until this point.
We got there around noon, had a CT around 3pm and pain meds around 5. They then told me they recommend a spinal tap to "rule out infection or hemorrhage." The first spinal tap left me feeling nauseas, dizzy and clammy within the first 5 minutes. So much so that they had to remove the drain and let me lie down because my blood pressure dropped too low. The second spinal tap was done in radiology. They successfully drained 4 vials of spinal fluid which took about half hour on a tilted table under x-ray. Overall, this is not a fun experience but could have been much worse.
I was discharged from the hospital around 11:30 after being told my spinal tap was clear and my Chiari is "not large enough for surgery."
Now-for those of you who have Chiari or Syringomyelia, you may understand how common this is. Let me first mention that when I walked into the ER the registering nurse told me that those are "awfully big words!?" I had to explain to the Emergency Room doctor what the surgeries recommended to me would entail and why my headache was not just a migraine. It makes you feel...lost when you are in a hospital full of doctors and nurses and surgeons who spent years learning about medicine and don't know what you are talking about, or worse, that it causes real pain. This is a HUGE reason why we need to spread awareness and educate. How are we supposed to find a cure and get answers when our physicians don't have them!?
I left the hospital feeling sad and still with a headache. I didn't go there expecting answers, just pain relief but it would have been nice if someone besides my husband knew what I was talking about. Now I am home. I spent the whole weekend in bed. My head still hurts and now so does my back where they stuck me twice with oversized needles. I had to miss work today which (for lack of a better word) sucks! I am feeling stuck. I have spent the last three years running in circles. What's wrong? Where do I go now? What are the answers? Should I have surgery and then back again. I feel like I am at a stand still. I need to make a decision to move forward. Even if I have surgery and it doesn't help, at least I will know I am doing something to make a change. At least I'd be trying. I need to fight for me since no one else is going to.
So today, I went to my PCP and got some temporary pain relief and also a few numbers for local neurologists. I have a call into my surgeon and an appointment scheduled with and ENT for a cyst that showed on my CT. I need to make a move. I need to try.
I know I said this in my last post but I feel I should say it again-my husband is my rock. He was there by my side the whole night before our ER trip, in an uncomfortable folding chair at the hospital while I was vomiting in pain and we were both starving for food and entertainment and he even left work early today to take me for my follow up because driving was too painful. I am beyond grateful for him. He understands when no one else does. He is truly a blessing and though I hope I never have to, I hope someday I can be those things for him.

Counting My Blessings

My head is killing me today. I felt fine this morning, healthy even but by 3 o'clock, my neck was stiff and my fingers numb and my head pounding. I came home to my heating pad and Advil. Hopefully a shower and nap can make the pain more tolerable.
While I lay in my bed, I think of how incredibly grateful I am for my family. I realize my husband is affected tremendously by these day to day struggles and he is always there to help me, comfort me and protect me. I am also so thankful for my parents. My dad has been with me through this journey every step of the way. He traveled with me to The Chiari Institute to find out about their surgery suggestions. He met me in Philadelphia for a second opinion. Not only that, but they are always there to help with the kiddo's whenever we need to visit doctor's or I just need a break. I hate needing a break from them but I do. I want to play with them and have the energy and patience I need but it's not always there. Those little things make me sad but I try to stay positive and think of how lucky I am to even have children, to have people who love and understand me. I have two great men in my life (two and a half if you count my little guy.) In that... I am blessed. Some women have never known a good man. I have one who has been there to guide me through life and one who has vowed to be my side for a lifetime.
I am truly fortunate in that I have sisters. I didn't always know how lucky I was for this but I do now. They are my best friends and I couldn't imagine my life with any of them. Each of them, in their own way is perfect and special and very close to my heart. I hope they know that.
Lastly, although it is not always apparent to most people, there is a small handful that knows my pain is real. I am incredibly thrilled to have found a few close friends through Facebook support groups. They know how real it is because they experience it too...Every-Single-Day. It is remarkable to have somewhere to go with questions or just to vent with people who are living it also to give their opinions.
I am sharing with you because I hope that I can be that perspective for someone else, even just one person. I remember the first time I read someone's story and thought "That sounds just like me!" If I can make at least one person feel that they are not the only person in the world who knows this struggle, then this will have a purpose. If nothing else it is helping me to spread the word and cope with the fact that this Chiari life is as real as it can be and not going anywhere anytime soon.
One final note for today and a good one at that-after some yelling and obsessive phone calls the Neurosurgeon's office FINALLY found my 11 MRI's!! Hallelujah! That is a blessing in itself.

Keep your head up and count your blessings! Thanks for reading :)

Run Around Sue

So, as many Chiarians or SM patients know, doctors can be so frustrating! I called them for my discs about a month ago. Today I called again because I have yet to receive them and they had me call here and there and back to here again. Turns out-they lost them! LOST THEM??? I was in shock...I felt like a new mom and a bottle of spilled breast milk. I had 12 discs ranging from Cervical MRI's with and without contrast to Flex and Extension MRI's to CINE's to CT scans. I literally drove to different states to get some of them because they are so rarely performed and they just... lost them!? Unbelievable. She then told me that I could call "there" again if I wanted them to burn them for me from what they saved on to the computer. Now I have to wait some more for that. Two steps forward,  three steps back.
Aside from that things have been ok. I have a lot of pressure in my neck today but it hasn't developed into a headache yet so I am hoping a little heating pad and pain medicine will nip that in the butt! I recently started working at a new job which I like a lot. There are days where I come home completely exhausted and that leaves me feeling torn. I was thrilled that I found a surgeon who finally gave me some answers but sad that I would have to push it off more waiting for time off. Then I think, when and if I have the decompression, how long will I be out of commission? I finally found a doctor and I finally found a job I like. They say you can't have your cake and eat it too? Whoever "they" is, was right.
Another new symptom that started a few weeks ago is that I see stars when I turn my head or stand up or bend over. They are actually like twinkley little baby stars filling up my vision. I am assuming it is a change in blood pressure. When it happened today I was leaning over to pick something up and it made me feel a little dizzy and I cracked my face on the corner of the dresser. Thank goodness it didn't cause a black eye. That's just what I need!
The pain is starting to settle in around my temples now and my head is feeling too heavy for my neck so I am going to sign off for now but before I go I wanted to share my newest fundraising page for the local Walk and Roll to benefit ASAP. I mentioned before ASAP is one of the leading Chiari and SM organizations and will most definitely help us to one day find a cure. Please consider donating or even just reading some of their material. Thank you and stay healthy!
https://sna.etapestry.com/fundraiser/AmericanSyringomyeliaAllianc/Reading_2013/individual.do?participationRef=294.0.622569509

One of the Few

I read this poem today written by one of the few doctors who understand Chiari. His name is Dr. Oro of Aurora, Colorado. I had to share:

 

Another headache
The third today
We all have them
... So they say

I’m getting dizzy
My vision blurred
Your getting older
Don’t be absurd

I’m staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can’t find the words
My memory slipping
My speech gets slurred

We’ll get a scan
Since you insist
If we find nothing
Please don’t persist

Don’t make me laugh
Don’t make me cry
It hurts to strain
I don’t know why

Your scan is fine
By report today
Incidental Chiari
So they say

Incidental
What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became too much

I waded through
The Internet
Fearful of losing
What I had left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We’ll find a way
To make it better
So I say

 

 

 

Sick & Tired of Being Sick & Tired

I hear a lot of other Chiarians and SM patients say that they get no sleep and the insomnia is terrible. For whatever the reason, I could sleep all day and all night and still feel tired. My pillow and heating pad have become my very best of friends.
 Aside from the fatigue, today has been a better day. This week has consisted of daily headaches but today has been just a slight pressure at the base of my skull-tolerable. I am still waiting for the surgeon to return my MRI's so I can contact a local pain management neurologist until my next scan. If the medical profession is one thing it is most certainly not fast!
I was able to register for a Walk and Roll to benefit ASAP in September. I will post the donation page soon. The walk I hosted earlier this year was for CSF. Both of these organizations do a tremendous deal for CM and SM research and studies. Without them there would be even less hope to finding a cure and I encourage you to check them out if you haven't already. I will post links below. As I said in my last post, spreading awareness has allowed me to cope with the fact that this pain may never go away and the frustration that very few people understand or even see how it affects me day to day. I have joined a handful of support groups through facebook and those people have become not only an incredible outlet but good friends. I have met others who have been through hell yet some have little to no symptoms. I have discovered strong, courageous people who have lost or are slowly losing their battle with these diseases. Every single person with these diagnosis' is different but we are all tied together with hope and compassion.
That is all for now. I am off to bed early. Here are the links I was referring to. If you are unfamiliar with Chiari and Syingo, I highly recommend you read their information pages. You can also purchase merchandise, make donations and read stories.
www.asap.org
www.csfinfo.org
Thank you again for taking the time to read. I am hoping to post more facts and maybe some photos this week. Check back!