How are you feeling?....

I keep going back and reading this post wondering what to add to make it less sad but I can't!  So before you read on.... know this....

Here's my disclaimer....

While these awful conditions are a huge part of my life...they are not my life.  There are times though that I wish I could scream out how much this all sucks sometimes.   Being that I was raised a lady...I don't.   But that doesn't mean I don't think it and doesn't mean I can't put it in my blog because my blog is to talk about these conditions...and it's not always happy.    

 

DEmotivators...I love these. 

How are you feeling?....

I dread this question.  D R E A D it!

Every time someone asks me this there is an inner monolog in my head saying

.....do I tell the truth?
I feel like crap today...my head feels like a 20 pound bowling ball and I would give anything to just go rest it on something so I don't have to hold the darn thing up anymore.

OR

.....do I lie?
 I feel great! :) ........It's easier and honestly are they really interested in knowing how utterly crappy I feel....? probably not.  Does it make everyone happier and less stressed when I say I feel fine? 

Absolutely....

Am I a good lair?  Nope... I don't think I fool anyone when I lie...but sometimes I do anyway. 

Do I still want people to ask?

yes.  

But only if you are truly interested because  I just may decide to tell the truth...and there are days that I want nothing more than to tell someone how I feel about all this....it's not something many would want to hear and it's something even fewer would be able to understand.  

But it would be awfully therapeutic to scream how much Chiari and Basilar invagination sucks just once....

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Not really Chiari related but....

I guess this could somehow relate to Chiari but its a stretch :)

The relationship to Chiari would probably be life goes on and so do I.   Some days suck....others I feel perfectly normal.   Everyday I wonder what's coming..but life does go on.  

I loved this quote and am seriously thinking of getting the last part tattooed on me just in case I forget.

Ob-la-di, ob-la-da life goes on.... 
 (a Beatles reference for those scratching their heads)

Speaking of living....
We went to  Disney in May and had a blast.   I did not have one headache the whole time!  I was scared that I would have a bad day or many bad days but nope..no bad days..none, zilch, nada!

....it was awesome and I felt normal.

Making memories!

...great ones that we will remember forever. 

Disney was great and I have never felt so much like a kid than I did sitting at the base of Cinderella's castle during the fireworks....not even when I was a kid.  Absolutely amazing! 

There are moments that you thank God for.... being with my family during that fireworks show was one of them.... 

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It takes a licking and keeps on ticking...

So I left off (far too long ago) with news that I was going to have a cardiac ablation to fix my SVT.   

How did it go you ask???....

It positively ROCKED!  Such an easy procedure to fix this annoying heart stuff I had been suffering from most of my life.  I had my echo on the 9th of April and the procedure on the 10th.

I was checked in, loaded up with Valium, and wheeled off to the operating room.  The nurses were blasting Aerosmith in the operating room....I either thought these guys are awesome or boy I am in trouble :))  Turns out the were awesome!   

Dr. Patel came in and told me what he was going to do...which was to fix me.   Then told the girl with the drugs that it was time to go night night :)  The last thing I remember was telling the girl...please make sure I stay night night through this whole thing! Some stories I had read said people were awake though this....no THANK YOU!!

So did the surgery go off without a hitch? ....

Absolutely not!  This is me we are talking about and nothing about me is normal.  

I guess normally the issue is caused by something in the left side of the heart but mine was on the right.   So the doc had to puncture the wall with a needle to get to it.   He did a fine job and I didn't feel a thing.

So 5 hours after this "heart surgery" I went home.   How cool is that?   I can't even imagine what they had to do to fix this 15 years ago...medical technology not only amazes me it makes me hopeful.  If I wait long enough maybe they can fix my head just as easy....or easier at least.  

Ha!!  Saw it and had to add...it made me laugh

3 days of hanging out in the house and I was my normal self again....still amazes me!!  I keep thinking if I lean over or do something that would have sent my heart into a frenzy before that it will happen again but it doesn't....its amazing! 

Before getting this procedure the doctor said there was a possibility that some symptoms I was attributing to Chiari may actually have been from my heart.   I was excited about the possibilities.  It did fix the heart problems.   But I can't see much else that has changed.   Maybe less headaches? ...but not enough to say wow it did fix this or that.   I did fix my heart though and I am so unbelievably happy and grateful to Dr. Williams for figuring this all out and Dr. Patel for fixing it! 

Hopefully this is the end of my medical excitement for awhile.  *Knock on wood* both my BI and CM have been behaving and my only complaint is headaches...not too many and not too awful.   I can live with that!

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What is Chiari Malformation?

There are a gazillion sites on the web that discuss Chiari Marlformation.... Basilar Invagination is much more difficult.   But here are some web sites that have helped and a little more info on Chiari....enjoy!  This is exciting stuff :) 

Mayo Clinic
Wikipedia
Conquer Chiari Brochure
Cedars-Sinai Chiari-Malformation

Chiari malformation type I

Definition

By Mayo Clinic staff

Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.
The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The most common pediatric form, called Chiari malformation type II, is present at birth (congenital).
Treatment of Chiari malformation depends on the form, severity and associated symptoms. Regular monitoring, medications and surgery are treatment options. In some cases, no treatment is needed.

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What is Basilar Invagination?

I have found a few web sites that explain Basilar Invagination pretty well.   I wanted to share....

Cedars Sinai 
Chiari Connection International
Duke Medical Center
Article by Timothy Hain 
 

Normal MRI

MRI showing Basilar Invagination and Chiari

Basilar Invagination

From Wikipedia, the free encyclopedia

Basilar invagination occurs when the top of the C2 vertebrae migrates upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to narrow. It also may press on the lower brainstem.
This is similar to Chiari malformation. That, however, is usually present at birth.

Symptoms

Symptoms vary depending on whether the spinal cord, brain stem, nerves or their blood supply is affected by the pressure.
Symptoms become apparent when the neck is bent. They include:

• Posterior head pain
• Neck weakness
• Periods of confusion
• Dysarthria (difficulty swallowing or talking due to loss of muscle control)
• Dizziness
• Loss of sensation
• Cranial nerve disturbance
• Loss of the ability to know how joints are positioned
• Lhermitte's sign (tingling when the neck bends backward)
• Weakness of the arms and legs
• Orthostatic hypotension
• Patients will go into a pool and notice that below their belly button the water is not as cold as it is above.

Complications from this can include hydrocephalus, pseudotumor cerebri or syringomyelia because it blocks the flow of fluid around the brain and spinal cord.

Causes and Risk Factors

Basilar invagination can be present at birth. If the condition develops after birth, it is usually the result of injury or diseases. If due to injury, about half the time it is caused by vehicle or bicycle accidents; 25% of the time by falls and 10% of the time by recreational activities such as diving accidents.
It also occurs in patients with bone diseases, such as osteomalacia, rheumatoid arthritis, Paget's disease, Ehlers-Danlos syndrome, Marfan syndrome, and osteogenesis imperfecta.

Treatment

If there aren't neurological symptoms (such as difficulties moving, loss of sensation, confusion, etc.) and there is no evidence of pressure on the spinal cord, a conservative approach may be taken such as:

• Drugs, such as aspirin, without steroids to relieve inflammation
• Cervical traction, in which the neck is pulled along its length, thus relieving pressure on the spinal cord
• Using a neck collar or cervical-thoracic suit

If there is pressure on the spinal cord or life-threatening symptoms are present, surgery is recommende

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.....But WAIT there's more!...

Did you know that there are studies that link Basilar Invagination and Chiari to SVT?  

 What is SVT you say?

 

What is supraventricular tachycardia? Supraventricular tachycardia (SVT) means that from time to time your heart beats very fast for a reason other than exercise, high fever, or stress.

During an episode of SVT, the heart’s electrical system doesn't work right, causing the heart to beat very fast. The heart beats at least 100 beats per minute and may reach 300 beats per minute. After treatment or on its own, the heart usually returns to a normal rate of 60 to 100 beats a minute. 

SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms.

It seems I have this too....and have had it since birth just like Basilar Invagination and Chiari.   At this point in the game I am afraid what other crazy birth defects are going to rear their ugly heads before this is all over.   

Dr Williams (whom I adore) set me up with an event monitor to catch the "episodes" that have been getting more frequent over the past year.   Two weeks later we had results and he sent me straight to the cardiologist...I did not pass go...I did not collect $200... 

They clocked my heart at 249 beats per minute and multiple skipped beats....    Guess what I did as soon as they told me I  had SVT?   

If you said ....go to Google you would be correct :)   

It said SVT is not normally dangerous and is almost always treatable with an outpatient procedure called ablation.   Basically they thread catheters into your leg and neck arteries and cauterize the parts of your heart creating a short circuit.  

So I am going for it!  All these medical conditions and finally I come across one that is relatively easy to correct...I am actually excited to have it fixed.  April 9th is my echo cardiogram to get a good picture of my heart so Dr. Patel can go in and fix me... I don't have the date for the actual procedure.  

The doctor said this procedure could very well correct some symptoms that I thought were related to Chiari....the possibility that some of these annoying symptoms could go away make me positively giddy with joy!

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My third opinion's second opinion...and I still refuse to listen :)

Procrastination has always been a skill I excel at...  I knew what I wanted to post about and even had a great image to put in this post but honestly I have felt crappy lately and a little sorry for myself. We are all entitled to a pity party now and then and my party is over :)...so back to my story!

Where was I? ...

I returned home from Denver after hearing I was going to have to wait for Dr. Oro to get a second opinion.   I'd like to say I will never forget the week after the visit while waiting for the results but honestly I did.   I'm not sure if it was shock of the whole Denver trip or just another pity party but I don't remember a thing.   I do remember however getting a call from Dr. Oro that I missed....UGH!!

I hate that.   You wait for a call...THE call and you sit by your cell phone non stop, constantly checking to see if your ringer is on or if it rang but you just didn't hear it.   The ONE time you are away from your phone for 2 minutes you miss the call you have been waiting on...it NEVER fails! 

So he left a message saying that he recommended cervical cranial fusion and brain decompression...the news I was most afraid to hear.   He would follow up the call with a letter...

So,  there it is.   The guy in Wilmington suggested it....the guy at Duke suggested it....the guy in CO suggested it. 

Have I gotten this surgery yet you ask?  Nope!

1. Because I am terrified of it.  
2. Because I am not THAT bad off.  Why would I want to go through this invasive surgery that would decrease my quality of life if I am NOT suffering?   
3. Because I don't want to! 
4. Because I have lived this way for 30something years :)  and I am still alive and kicking. 
5. Because no matter how many times people have told me I need this surgery, no one has been able to tell me what will happen if I don't have it.  
6. Because I don't want to!!! 

Will I eventually have to get the surgery?   Probably.   But I'd like to think I will know when I have no choice.  There will come a day when I see the signs that I am getting worse and I will have to face this fear....
But today is not that day.

So...I am all caught up! You know my journey that has brought me here...

I learn more about these conditions and myself everyday and am finding ways to live with it....live through it.

So my journey continues and so does my blog :)   I have learned a lot over the past year through my research and have a lot more to share.

My goal....add every bit of info I have found on a million web sites to this blog...if one person is diagnosed with these awful conditions comes to this blog and feels a little less a lone....or knows a little bit more than they did before... I will have succeeded.   :) 

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