The Rules....Doh!!!

The Rules….Doh!!!

When Piper was little, two years old to be exact, we had a horrible time getting her to go to bed. Better yet, we had an even harder time getting her to stay in bed. So we came up with rules for bed time. They where simple, she could understand them, she could repeat them.

No talking, No singing, No playing, No getting out of bed….

For the most part it worked.

The world is full of rules, like it or not.

Rules for driving a car, rules at work, rules in a home owners association.

Rules, Rules, Rules….like it or not that’s the way it is.

Starting from the time we are born there are rules.

The reason I bring this up is because there are rules for blogging too. Yep believe it or not there are. But my goodness I think some people loose all sight of this when they start to type.

Now granted there is not a “set standard of rules” but I just like to call it common sense.

I was reading a blog and this person was so distraught that everyone was mad at them for what they had posted on their blog. So of course I had to go back and see what they put. OMG!!!! The blogger had posted personal details of other peoples lives, not there own….Wow….no wonder there friends were upset…..

Some general rules of blogging, (As I see it of course)

-Don’t use real names of others unless you are talking about them in the highest regard and even then think about it long and hard

-Never, and I mean never talk about your ex’s- I don’t and never will.

-Never talk about arguments with your spouse, family, friends, coworkers…it’s just in bad taste.

-Be bold with your opinion but wise with how it is worded

In general as a golden rule…..

Never write anything down you would not want the whole world to see

The Vrdict is In

The Verdict is In


Shunt Obstruction….

Yep…just what I feared it would be.

Dr. Williams is 100% sure it is a partial shunt obstruction and almost 100% sure it is a total shunt obstruction.

So what this means is Surgery.

He is referring me to the Chief of Neurosurgery at Sinai Hospital.

It is not a matter of if I will have surgery it is when.

Basically, they will start in the abdomen and look at the tip (end) and see if it is blocked there. They may need to reposition the end of the tubing. Regardless of what they find there they will also look at the valve (brain) end of the shunt. Dr. Williams has a strong suspicion that the catheter here is blocked and will need to be replaced.

Oh boy!!!

To avoid multiple trips to Baltimore we will arrange a consultation with the Neurosurgeon the day before surgery. I will spend approximately two days in the hospital and then a few days after in Baltimore just to make sure everything is going well.

I should expect a call from the Neurosurgeons office this coming Monday or Tuesday to start arranging times and dates.

Wheww…..What a ride….what a ride…..

Still trying to wrap this latest development around my head.

Brain Surgery again……sigh

Baltimore for Testing

Baltimore for Testing

So back to Baltimore I go…this time with Mom.

Boy that is one tough ride. Between the construction and D.C and Baltimore traffic whew!!!! Now, yes I do fly for free but sometimes it is a hassle but driving is a hassle to. Pick your poison.

Mom and I stayed at the Radisson and it was very nice. Our room had Sleep Number Beds and to tell you the truth, I don’t see what the fuss is all about? Overrated is the word that comes to mind, but that’s just my opinion. We had a great dinner at Crossroads and then headed to bed.

The hotel was situated in a shopping complex with stores such as Talbot’s, J. Jill, Chico’s, Jean Pool, Pied Piper, and Williams Sonoma so needless to say Mom and I had no trouble killing time before my two o’clock appointment.
The only issue I was having (besides my head) was that I had myself so worked up I was hot as hell. I felt like I was roasting!!! Even though it was rainy and cool outside. So we headed over to Sinai and up to Radiology.

Check in went ok..not as smooth as it should have been, but that’s a long story. But thanks to the wonderful lady at registration we got it all straight. I must say she was absolutely delightful and had me at ease in no time.

Another great thing at Sinai is that they let my Mom go back into the X-Ray/Scan room with me and stay the entire time!!! My Mom is my rock so this was the cherry on the top, so to speak.

The Nuclear Medicine Doctor got me all set up and we waited for Dr. Williams to come in. He made his grand appearance and off to the races we went.

First off he has to shave some hair around the shunt area. Seriously I think….Seriously. Pretty soon here people I am going to run out of hair to cover up all this shaving business!!

Next he cleaned the shunt area and then used a numbing cream. Now for the fun part. The needle. Actually, at this point in my life I have been prodded, poked and stuck so many times it really does not bother me anymore. Yea Right!!! This needle went into my head, well actually into the shunt reservoir. To make this even more fun (like it could be) it took three times to get the needle into the right place. Ouch!!!!

So after the radioactive die is in he has we turn my head back and I lie still for twenty minutes. The entire time I have to lie still. Not hard, not painful. I talk with Mom and listen to the Nuclear Medicine Doctor talk to us about his growing up in Kenya.

After the twenty minutes is up they have me sit up for ten minutes. Hmmmmm. Then I lie down again for another round of imaging of fifteen minutes. After that round they decide they want images from the side view. Hmmmm. Ten minutes of those images.

They let me go to the waiting room after that while they page Dr. Williams. At this point I have no idea what the results are. I just know I have a horrible headache and am ready to hear something. So the tech comes out and I think she is going to tell me that Dr. Williams wants to see me but no….he wants ten more minutes of imaging. This is when I know something is up.

After that round Dr. Williams is there and we look at the results together.

Sighhhhh…….Sighhhh….

This is the Sigh heard around the world. Not really..but you get the drift.

As usual, with me anyway..If you can’t go big, go home.

The images show very little if no flow in the first 20 minutes. After I sat up for ten minutes the die did move some, but not much. This pattern continued through each continued round of imaging.

They never saw the die leave the tubing and exit into my stomach. FYI, it should have easily done so within ten minutes in a normally operating shunt.

AGHHHHHHHHHHH!!!!!!!!

So where do we go from here??? Good question my friends.

This test could indicate one of two things or both
The shunt is obstructed/blocked
The ventricles in my head have collapsed onto the valve and are causing low pressure and over draining

He did not admit me to the hospital for IPC monitoring because he feels that the shunt may obstructed (which this test is mostly showing) the results would not be valid and it would be pointless to but me through that.

So, he wanted a few days to process the information and also consult with a Neurosurgeon and see what the next best step would be.

What could that be? Well anything from simply adjusting the shunt setting and seeing if that helps to surgery to explore if there is a blockage in the abdomen or brain.

I have a phone conference scheduled with him today at four o’clock and I am very anxious to see what he has to say.

Now it’s just a waiting game and looking at the clock constantly.

I am so thankful to have found a Doctor that is really interested in finding the cause of the problem and finding the solution. I have said it before and I will say it again. Intracranial Hypertension will always be a part of who I am, but I will not let it be what defines me.

“Live your life crazy, and love every minute”

Random Thoughts

Random Thoughts

Random Thoughts…You know you have them. We all do.

I like the saying “I’m not Cruel, I just say what everyone else is thinking”

LOL!!!

It’s the strange things in life that make you have those random thoughts.

For instance…

Just because they make it in your size, does not mean you should buy it.

God gave man knowledge and with that knowledge he made nail polish…look into it for your toes….your fellow neighbors will thank you.

If when you lift up your arms your shirt rises almost up to your chest…its time to retire the shirt.

Ahmmmm…I’m just sayin.

Caterpillers..Those suckers apparently will turn up anywhere. Wonder why?

Why is it that we associate Wine and Cheese together? Why not Wine and sausage dogs?

We drive on a parkway and park on a driveway…..Why o Why…that makes no sense at all!!!!

Whats the difference between normal ketchup and fancy ketchup?

How can something be "new" and "improved"? if it's new, what was it improving on?

If parents say, "Never take candy from strangers" then why do we celebrate Halloween?

If K.F.C Stands for Kentucky Fried Chicken, Why do they play sweet home Alabama on the commercials?

If there's an exception to every rule, is there an exception to that rule?

Why Does Pluto Live in a dog house, eat dog food, etc. but Goofy, who is also a dog, lives in a condo and drives a car?



See there are tons of random thoughts and random questions. Granted some are not so nice and some are just plain, well weird.

It’s a crazy world out there folks…somebody ought to sell tickets….heck, I’d buy one!!!!


By the way….I will update tomorrow night about my Baltimore trip and the lasted about my battle with IH. Just had to drop some humor for the time being.

Winner, Winner Chicken Dinner

Winner, Winner, Chicken Dinner

Yes I actually came out of a Doctors appointment not wanting to go back in and body slam the Doctor. (to be fair, I am dealing with an illness that is rare and most Doctors have little knowledge about)

I had a huge smile on my face and a weight lifted off my shoulders.

Wheww..

It seems that I have finally found the right Doctor to treat me. He is an expert in the field of Intracranial Hypertension and boy does he know his stuff.

This is one of those appointments that are really hard to explain. Why is that you ask?

Well for one thing when is the last time you met with a doctor for a little over two hours and had his undivided attention? Yep you read that right. Over two hours.

The thing that really impressed me about him is that he said that we can’t just look at the shunt, we have to look at everything and see what other factors are going on that could be affecting me/head pain.

To start off with he had me tell him my version of events of what has happened since January.

That was a long and drawn out conversation.

Next was the neurological examination. Eyes, reflexes, cordination..ect….

Then onto the down and dirty…what to do with me now.

One interesting thing he did have to say was about the the surgery I cancelled…ya know the second shunt I was going to have placed… the surgery at Wake Wed.

He said that I “Don’t need two exhaust systems” I kid you not…his exact words. LOL!!!! Why in the hell could he have not told me that over the phone earlier, well we will never know.

He feels that yes I do have Intracranial Hypertension and it is not under control. Why…well that could be several reasons.

#1- I could have a blockage of the shunt. When he looks at my CAT scans he sees that my ventricles on the right side of my brain (the side where the shunt is placed) are much smaller than the right. This may be an indication that the ventricles have collapsed onto the shunt valve. Also, because I have had three abdominal surgeries in the past I am at greater risk for lesions and adhesion in the abdomen. This could mean the end of the shunt tube has adhered to one of them and it should be free floating.

#2- I have trouble sleeping and snore…also while in the hospital previously my family noted that I would stop breathing for seconds then gasp for air and continue breathing again. Signs of Sleep Apnea…which according to him have been and can be attributed to Intracranial Hypertension.

#3- Which I still don’t understand is that I may actually be having an overdraining issue, a low pressure issue. I won’t go further into that because I really don’t understand it myself.


Overall it was an overwhelming appointment…but in a good way! I have never had a Doctor seem so interested in the whole me. He talked about everything from the shunt, my weight, to my vision disturbances. It was refreshing.

He wants to help; he wants me to be back to the real me. He is ready to do what it takes, whatever it takes to get there. Sighhh…. What relief….I cannot even begin to explain it.

He was so down to earth, so easy to talk to, to real. He listened, he asked questions. He has a plan. He is not about to throw the towel in.

So what is the plan you ask?

I will head back to Baltimore on Monday for my appointment on Tuesday. On Tuesday I will have a Shunt Patency test. This test will show if I have a blockage in my shunt. They will take a needle and inject die into my shunt and watch the flow.

If there is a blockage, well we shall go from there….that would mean surgery.

If there is no blockage seen then I will admit to Sinai hospital for ICP monitoring. They will insert a monitor into my brain. This will monitor the spinal fluid pressure in my brain for 48 hours.

Whewww did you catch all that.

So that’s the wrap up, for now.

Oh what a ride it’s been, but life is like a ride isn’t it…It has its ups and downs and levels out at times. But we all just hope we get to ride the ride of life for a long time.

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 line..no 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.



HOLD UP>>> WAIT A MINUTE>>>>>>


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 www.blogtalkradio.com 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.