Friday, January 8, 2010

Its going

Wow!! My last post was November 9th!!! Shame on me.

A lot has been going on. Well duh, its been almost two months!

Let's see, where to start.

Things had steadily improved with me. I started driving again, started going out of the house, heck I got a bike for my birthday and have rode several times with Miss Piper. I would say that things were looking and feeling much better! My pain levels seem to be under better control and the drowsiness and sluggishness has finally gone away. As far as sleep goes...well that is still a constant battle but I will take the little victories for now.

I had my follow up with Dr. W at the beginning of December in Baltimore. He was pleased with my progress. We discusses changing the setting of the shunt but decided against it because he feared that might do more harm than good. He made it very clear to me that my body and my brain have been through a tremendous amount in one year and I need to take things slowy. I cannot expect to be right back where I was a year ago in just a week. We also talked about what to expect in the future. Unfortunately, shunts do not last forever. They typically only last 2-6 years and then they will have to be replaced. Sucks, I know. But as Dr. W said, you cannot go around everyday just waiting for it to fail, you have to live your life. The plan is to go back and see him in 6 months unless there is a problem then I will see him before then.

He did agree that if I wanted to try going back to work part-time then that would be okay. He did stress the part-time and wants me to take it slow. Wes and I had thought about me filing for permanent disability (which I would more than qualify for) but I really want to be able to work! Crazy as it may be, I miss my job. So after much deliberating and soul searching my first day back was on December 14th.

So how has work been going. Well....its been hit or miss. more on that later.

I am still seeing my awesome Pain Management Doctor and he truly has been a life saver. I really think if it were not for the pain meds I take daily I would not be able to make it through each day. Through my appointments with him, he has also diagnosed me with Chronic daily Migraine. Fun times, kids.... He says this is quite common in people with Intracranial Hypertension. As time goes on I am now able to tell the difference in a pressure headache (Intracranial Hypertension) and a Migraine. There are different ways to treat the two of these so knowing which one I am having at that given moment helps me in determining what medicine to use.

So things had been going really good and then the week of Christmas I started to feel not so good, and to be honest I have just not felt very good since. Sigh.......

At first I just thought it was the stress of Christmas but now I am starting to get a little worried that maybe my shunt is malfunctioning. I have had some ringing in my ears and several episodes where my vision has become blurred and spotty. Dr. C, my pain management Doctor wanted me to try a three day course of Relpax and prednisone this week but after two days of that I just could not take it anymore. This medicine make me so sleepy and tiered and just plain ughhhh. So I took the medicine on Tuesday and Wednesday and said NO MORE. Thank goodness the girls went to there dads today (Thursday) I slept till 4:30 this afternoon and that's with me going to bed at 11:30 last night!!!!! See I told you this medicine was evil!!!!

Remember how I said earlier that work was, key word was going good. Well this week I have only been able to work one day. Sighhh.. thats not good. Basically I think I am going to half to break down and call Dr. W in Baltimore and see what he thinks is going on. I don't know if maybe I need another Lumbar Puncture to see what the pressure is or what?

I really wish this would go away. I think my family seems to think it should have. Somehow I don't remember being told that? Will they ever just accept that this is a part of who and what I am now? This has got to be one of the most fustrating parts of this disease, helping other people understand. It is just not magically going to go away, it does not work like that.

So that is my update for now. They are calling for snow here and thats always fun...

I will make some calls tomorrow to Doctors and hopefully start the ball rolling to find out why I was feeling so good and now feeling so bad.

Monday, November 9, 2009

It Could Be

It could be worse

Yeah, but right now it’s pretty bad to me.

Never compare two people’s levels of pain, despair, sorrow, hurt ect….

There is just no way to compare.

I wish more than anything I could say that my head feels great and that I feel like going out and jumping right back into life, but I don’t.

I know that the people in my life mean well but trying to push me into going and doing when to sleep and telling me I don’t need to take this and that medication is well….not helping. Frankly, it’s hurting.

A big part of it is they want the “old” Brandy back. Well I do too. But I am not so sure that will ever happen. What if it never happens?

Everyday I wake up and pray that today is the day. That today will be the day my head decides to behave and not hurt. I have had an ongoing excoriating headache for almost a solid year. Yes, there have been breaks in the pain but those are few and far between. Now, just stop for a minute and place yourself where I am. In that one year, four brain surgeries, meningitis, hospitalizations, E.R. visits, blood draws, C.T. scans, spinal taps, PICC line, the list goes on. I have missed soccer games, volleyball games, awards days, field trips. The list goes on and on.

Today is my birthday……

What do I wish for? What do I want for my birthday?

I have a very simple wish and want this year.

I want to be pain free.

But what I really want;

I want to wake up everyday and my head not hurt.

I want to not have to take any medication, not even a vitamin. I only want to have to see a Doctor for a yearly physical or maybe just a nasty cold. I want my long hair back and these scarves and wigs thrown away. I want the scars on my stomach and arms to be faded away. I want to be able to sleep like a normal person without the help of a sleeping pill.

Above all, all I really want for my birthday is what and who I used to be. I am just not sure that will ever happen and maybe it is time to start to acknowledge that and learn how to cope with who the new me is.

So Happy Birthday to me and here’s hoping that 31 is a heck of a lot better than 30!

I found this quote and thought it was something to ponder.

“When life veers from the course you had planned out, re-evaluate your priorities and maybe you’ll find that what you have is better than what you had planned”

Tuesday, November 3, 2009

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.

Friday, October 16, 2009


I've been bad.

I have not updated like I should have but to be fair my eyes have bee hurting so much and the instances of blurred vision and black out vision make it kind of hard to be on the computer let alone type.

The testing in Baltimore went like thy thought it would. DUH.ummm yeah!

I ran he gament on the pressure monitor from 5 all the way to 60/600. As Dr. W said there is no doubt that I have IIH. So what is the plan?

Well part of the plan involves the fact that I am sitting in Baltimore typing to you right know from a hotel room!!

Surgery is tomorrow at 1:30. I have to be there at 9:45. They will be placing a new VP shunt in. This time they will go in on the left side (the previous one was on the right)

I am really hoping that this works but at the same time I am going to be honest with myself in knowing that it may not. It could take care of all of the headaches, it could take care of only a few, it could take care of none.

But for now we will hope for the best.

I am sure the next update will be filled with lots of information.

Till then.....

Thursday, October 1, 2009

Itching..for paint

I am watching way too much T.V. these days.

When your head hurts the television is just the natural thing to do as it is just about as mindless as it gets.

I tend to go through spells on what channels I get "stuck" on. For a while it was the Travel Channel, then Bravo and now it's HGTV.

Oh yes HGTV.

And now by watching it I am sooo itching to do something, anything to my own house. Mainly I really want to put a screened pouch onto our existing on. Um yeah...okay. Dreaming a little big at the moment but hey ya gotta dream.

So for now I think I will stick to painting. Probably not the greatest idea with head pain and low energy but when I am having a good day I do want to do something productive.

Even though Wes hates painting I did manage to drag him to Lowes to help me pick out some colors. For starters I plan on doing the girls bathroom then I want to tackle the kitchen.

Tonight I started the prep work on the girls bathroom so hopefully tomorrow will be a good day and I can get it painted. I will post picks when it is done.

For now I am going to kick back and watch some more HGTV and then head to bed and maybe dream of tile!!!

Wednesday, September 30, 2009

Every Season

Every Season

I realized today I have been dealing with IIH (Idiopathic Intracranial Hypertension) for all four seasons of the year now. Winter, Spring, Summer, and now Fall.

It’s quite amazing to me that just a year ago I did not even know what IIH was or could even imagine the hell that would await me the coming year.

I mean really??? So far in the span of those four seasons I have had 8 hospitalizations, 3 brain surgeries, and countless Doctors appointments and test.

MRI, CT Scans, Blood Work, PICC Lines X-Rays…..whewww you name it I’ve done it.

I know more medical terminology than I ever wanted or cared to know.

I now don’t just have one Doctor anymore I have a team of Doctors.
My “team” consist of a Primary Care Physician, Neurologist, Neurosurgeon, and Pain Management Doctor. It only took until August to get this team “right” LOL….but seriously all of these Doctors are the best fit for me and my illness and they communicate wonderfully together which is great being that two are in Baltimore Maryland, one in Clinton North Carolina and the other in Cary North Carolina.

Here’s the update for now, but as we all know things can change but I pray very hard that it stays as is.

I will head to Baltimore on October 6th with Mom for admission to Sinai on the 7th. For this admission they will be placing a lumbar catheter and be doing pressure monitoring and then a drain trail. Basically for 24 hours they will continuously monitor the pressure (ICP) in my head. This will help give them a better idea of what the pressure is actually doing and what shunt and setting to use. After the 24 hours they will drain approximately 40cc of fluid to see if I get any relief from that. (DUH!? The whole things a big duh moment for me but that’s a loooong drawn out issue and well, lets just not go there.)

For the testing I will either stay 2 to 4 nights in the hospital depending on the first rounds results. If all goes as we expect we have a penciled in surgery date of October 16th for new shunt placement.

So there ya go. It can’t get here fast enough.

Not having the shunt currently in place is causing my head to feel like a giant balloon overfilled with air. Not fun.

Let’s face it folks, pain meds are only going to do so much as the problem is pressure. I need the pressure to release out of my head. There is only so much room up there and trust me your body really does not like it when you try to add to much

Tuesday, September 22, 2009

An Apology to Mom

An Apology to Mom

I felt good enough yesterday to take my seven year old and ten year old shopping yesterday with my Mom.

Did I mention that my ten year old was involved and this shopping trip was for clothes?

My sincerest apologies go out to my own mother for every clothes shopping trip she ever had to endure with me.