Wednesday, June 10, 2009

The Buffet Line of Life

The Buffet Line of Life….

Ummm yea….too many choices

Which one to choose… the fish, chicken, meat, liver…?

Life is like a buffet really it is….let me tell you why.

When you go to a buffet there are a zillion choices of food items. They all look wonderful. Right?

From the salad bar to the dessert bar your tongue starts watering…come on you know it does. You know you just want to grab a huge spoon and start dipping into everything right there with wild abandon..opps that’s my gluttoness dream and not yours…

Well how the sam hill is life like a buffet? Well its all about options and choices and having to choose. It’s nice to say you want everything on the buffet (life) but in actuality we have to choose bits and pieces off the buffet (life) and pray to God that we make the right choices and don’t get heartburn in the process….

Sigh…sometimes…I think I look too deep into things. This may be one of them.

So this is going to be a long blog entry so grab your vodka, beer or coffee…whatever your drink of choice is and settle in and don’t say I did not warn you…OK? OK

So my Neurosurgeon visit….OMG what Drama….

Let me say that I do love my Neurosurgeon…he is wonderful and very honest. He comes in and basically says that he does not really know what to do with me. He has only treated 4 patients with my disease and I am the 4th. He also says that he is so sorry for all the pain I am in. (Yea, me too) He says that the only thing he can do is to place an lumbar peritonerial shunt (LP) . At the same time he cannot guarantee that this will do any good. He cannot say that this will rid me of the daily pain I am in. OK then…

Pause for dramatic effect…

So……What does he say…. He says that if I want he will do the surgery.

Yes, you read that right it was not a typo. He will do the surgery if I want.

Wooooo….Hold on here..You have got to be kidding me. My Neurosurgeon is telling me that if I want he will do surgery. Hmmmm. No pressure.

So, we leave and discussion begins.

Lets face it people, I am a Purchasing Manger. I deal with China and Germany not Medical lingo..what the hell do I know….

I will save you all the details and cut to the chase.

I have decided to have the surgery. After much debate and consideration the benefit outweighs the risks. Also, if I don’t have the surgery I will always wonder if that would have been the “fix” for me.

As of now surgery is scheduled for Wednesday at Wake Med. I will be having this shunt placed in my back and will spend at least one night in the hospital.


That’s way to easy….Right?……Right.

Life is a Buffet…and it’s all about choices….

Texas Toast or Muffin…you choose.

Life is never easy and why in the Sam hill did you think this would be a smooth operation? No pun intended.

What you don’t see is the back story (per say) that is going on in my life…..

I have a great friend, Michelle that I have never met in person. LOL. We met on a chat board for Intracranial Hypertension and then became friends on Face book.

She posted a link for an upcoming talk show on Intracranial Hypertension on with Dr. Tanne. who is the founder of the Intracranial Hypertension foundation. I, in turn also posted the link. My wonderful mother listened to his show and decided what the hay, I will call him.

Guess what? She spent about an hour on the phone with him.

He recommended a Doctor in Baltimore that specializes in Intracranial Hypertension. Dr. Michael Williams. He is with Sinai Hospital in Baltimore. She called, talked to his nurse; she said send your record and we will see if he accepts you.

So, I, the ever pessimistic person hold no faith in this. After the Cleveland Clinic disaster and being turned down by the Mayo Clinic who could blame me.
But as I am preparing for surgery, I get word that Dr. Williams wants to talk to me via phone on Monday. Mind you that on this day at twelve o’clock I had my pre op phone call with Wake Med. I was all set to go with surgery.

Long…long story short and 45 minutes later talking with Dr. Williams he wants to accept me into his practice. But he will not come right out and say that I do not need to have the surgery that is planned. He does however; place a lot of doubt in my mind.

So after much thought, agony and tears…. I decided to cancel the surgery at Wake Med…. Was it the right choice…I don’t know.

What I do know is this.

On June 11th I will meet with Dr. Williams in Baltimore for a clinical assessment.
The following Tuesday I will head back to Baltimore for a Shunt Patency test. (This is where they inject die into the shunt reservoir and watch the flow to see if there is a blockage)
Following that, I will admit to Sinai Hospital for a two night stay and have an ICP monitor placed ( this is placed into the current shunt/brain) to measure the pressure for 48 hours.

After that…I just don’t know.

It has been a crazy ride so far and to tell you the truth, I want a break!! I am all for adventure but I don’t think this is what I had in mind.

But I will say this. Never give up trying to find information. You just never know where you will find it. I signed up on a great website/chat forum and found a wonderful group a people going through the same thing as me. I may have never met any of them in person but it feels as if they are always right there with a shoulder to lean on.

And never be afraid to call the experts in the medical field. What’s the worst that can happen? They don’t call you back? But there are those times were medical professionals like Dr. Tanne really care to help everyone they come in contact with. His last words with my Mother were for either of us to call back if we had any questions, and I believe he sincerely meant it.

Lastly, I wrote once about Great Expectations and how I got burnt on them…Sigh. I am really hoping and praying that Sinai and Life Bridge Health do not turn out to be another Cleveland Clinic. But the difference this time is he saw all my records before hand and had to except me as a patient.

So I just have to have a little faith and trust. Not necessarily Great Expectations, because I have now realized that for now those can never be met as there is no cure for Intracranial Hypertension. Maybe one day but for know I just need to learn how to deal with what has been handed to me.

I will try to up date a little better and after each appointment.

So may we all smile a little bigger, laugh a little longer and hug a little tighter….

Life is a journey that takes us many places. Life is an unexpected blessing.

Life can throw you a curve ball and it can happen in a second and it can change your life forever.

Life is short…Pray Hard.

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