Number 4

Number 4

That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.

This surgery was a little different in a few ways.

For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.

The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.

I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.

Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.

So a big hug and kiss from Mom and Dad and off I went.

The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.

As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.

To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.

Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.

I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.

From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.

I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.

As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.

When Life Hands You Lemons

When Life Hands You Lemons…..


Make Lemonade????

I really hate that saying….because unless you have sugar it’s going to taste really bitter.


But life is like that sometimes, bittersweet.

Graduation was bittersweet.

Divorce was bittersweet.

Being single was bittersweet.

Watching the girls grow older and more independent is bittersweet……

But Life is all about change and dealing with change.

Whether we like it or not the one constant in life is change……

I had to have my hair cut, it was inevitable. I was missing a three inch section of hair. It was noticeable to say the least. My wonderful mother drove me to the salon and sat in the other room just to be there as support. Hair is the least of my problems these days. I have a record long list of more important things to worry about but for the time being this was something I could control, I could decide, I could have a say in.

It seems so vain to be worried about hair….but a haircut and a hairstyle is a personal thing…It’s a reflection of personality, of spirit, of who we are.

I have always been the girl with long hair….always…..so with IH not only has it taken away months of my life that I can never get back, hospital stays, medical bills, missed ballgames, laughter….it has taken away my long hair…..my long hair that was a huge part of me….

It may be vain….

It may be silly…

It’s a small thing on a list of huge things….but I could tackle that one today…..

Change is bittersweet….

We like the comfort of what we know, we like the routine, we like to know what’s around the corner….

But maybe just maybe….we need to be handed more lemons in our life’s and find ways to make more than just lemonade.

And the Rest of the Story Part II

Okay people you are about to be bombarded with blog post so don't say you were not warned....

Okay?.....Okay....

I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal

Continued form last post

We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.

Lets face it I am letting them cut open my head..willingly

We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go

When I wake up what do you think my first reaction is?

Come on now, play along...guess

I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope

The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!

Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.

Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.

So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.

I was released the next day and was hopeful that all the pain in my head would be gone.

Right?

Wrong?

Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.

Everyday brings new issues, new symptoms, new challenges....sigh.....


The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.

If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.

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Okay wait over

The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.

Adjusted..what the hay, how do you have it adjusted.

Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.

So I had it adjusted to 14-15 which now I fear is to high.

As of today my stitches are out of my head and my abdomen.

I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.


So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.

I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.

Now for the next post and some awesome, exciting news.