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.

Fasten your Seatbelts Kids

Fasten your Seatbelts Kids


How can it only have been four days since I took the time to blog. How can only four days have gone by when so much has happened? I just don’t slow down, not even for four days to happen.

We spent Wednesday night in our new “home away from home” Sinai Hospital. I got a little bored/antsy and took some pictures of the room. I know, how weird is that? My room is huge (compared to most hospital rooms) besides there just being a bed and side table for me there is a complete sitting area with couch and chair. In the stand up closet there are four folding chairs and even with these out, there would still be room for more. One really great thing, (and very convenient for the nurses I would think) is there is a nurse work station in each room. Each patient’s room has a station for the nurse equipped with a computer and basic supplies. Instead of having to trudge back to the nurse’s desk to check something, they can just check it right in your room.

To start with Thursday morning I had a CT scan. You will start to see a theme with me and CT’s so don’t worry it’s not a typo. Then the dreaded Spinal Tap/Lumbar Puncture. I will not go into to many details, because frankly I don’t want to relive that even in my head again. My opening pressure from the LP was 31. Whoooooooo…..Not Good….Really Not good. If you remember most “normal” peoples opening pressure is between 10 and 18. Not 31.

This is when I knew, this is when all the thoughts and concerns I had were confirmed.
I am sure some people thought I was insane or panicking for being back in Baltimore so soon. I am sure the thoughts crossed everyone’s mind when a little over a week ago I started complaining about my neck being sore, or just feeling crappy like I had the flu. At home I would randomly run a low grade fever of 99 or 100, discussions were had about that not being a “real fever”. I am sure everyone thought I just need to get a hold of my self, after all it had not been that long since I had the revision surgery. But with an opening pressure of 31 I knew that I was validated with my concerns. If there is one thing I have learned it is to trust your body. I know one heck of a lot more than anyone else about it.

So now that we have blood drawn and spinal fluid drawn it is a wait and see game. We wait and see if any infection or bacteria grow within the sample. This could take 3-4 days. By this point my neck has become my worst enemy..LOL…seriously. I never knew that my neck could possibly hurt as much as it did but WOW. It is to the point that I have very little range of motion and it just throbs. Friday morning brings another CT scan, okay strange. The Doctors now want to send me over to the Keager Eye Center for a full eye exam. This is connected right beside Sinai Hospital and I and my transportation friend hit the halls. Know let me remind you that I just had a lumbar puncture yesterday…that is a very important point right now. My transportation friend drops me off (I am in a wheelchair and stay sitting there) in the waiting room, signs me in, hands over my medical chart and I sit. I sit, and sit some more. Now let me just say that my Nurse had some into my room right before I left and told me the Eye Doctor wanted to se me know!! So I figured I would go in wait maybe 10-15 minutes and then be seen. As I sit in my wheel chair I have found a clock on the wall, you know just to glance at every now and then. But as I sit in the wheelchair I start to get hot, and that old familiar feeling of slight pain runs across my forehead. I also feel sharp pain in my back. Hmmmm, lets see I have just had a lumbar puncture less than a day ago and here I am trying to sit up in a chair…Guess what folks? It really does not work that way. I look at the clock 30 minutes have passed. I sit there and honestly try to tell myself I can do this, but my body is saying otherwise. I look at the clock and 45 minuets have passed, I can’t so this anymore. I am in a cold sweet, my head is pounding so bad that I am unable to keep one eye open anymore, my back is starting to arch and worst of all I am extremely nauseas. Thankfully this is when a nurse sees me and tells reception that I need to get back to my room. There is some flash of argument that I will be seen really soon, but thankfully the nurse will hear none of this. By the time I got back to my room, I was a mess. In complete tears already, seeing Mom, Dad and Wes sent me into hysterics. I can’t remember the last time I was in that degree of pain. I know all this is due to the lumbar puncture but still geesh… I will save you all the details of the rest of this day because #1- they are not pleasant and #2- the Charge Nurse ended up having to be called into this mess and really strong narcotics were needed to make this nightmare stop.
To say the least, the rest of the day…..I have not clue what happened. I woke up and it was Saturday.

Saturday came and I was off for another CT, this time with contrast. What is going on with all these CT’s, I am not sure, but intend to find out. We met with Dr. D and she let us know that the cultures from the blood and from the LP were not growing anything yet, which was somewhat surprising. To be on the safe side though she wanted to get a CSF fluid sample closer to the brain, and that would be in the shunt reservoir. She felt like she needed to get a clean sample. She cleaned to top of my head with bedodine and after draping she used a long needle and pulled the fluid out of the reservoir.

The rest of the day was pretty mindless and we all thought that nothing would happen (surgically) for three or four days. After all, it would take that long for the new fluid sample to show any infection Wes was scheduled for a three trip so he went home to get ready for that and Mom and Dad planed for Dad to fly home on Sunday night.

Sunday came and I was off to another CT. What gives, what’s up with all the head CT’s? Turns out they are using these to also watch for infection by changes in the brain….DUH.
So the day is mostly going by pretty boring? Mom had just gotten the confirmation on Dad’s flight home when my room door opens and Dr. D’s PA comes in. She bypass’s everyone and looks at me and says “When and what was the last time you ate”. Well, the last time at ate was at 9:30 and I had a blueberry muffin and coffee. I guess the obvious question of “Why” is on my face. The sample culture from my shunt reservoir has started to grow, it is an infection. This means that my shunt is infected and is way to close to my brain and this sucker has to come out fast. She tells me she has to check in with Dr. D. and let me know. I stand there with a look of shock on my face for about a minute and thinking wow this is happening really quick.

First things first. I have to call Wes and let him know. When I call him he is ten minutes away from the airport and fifteen minutes from checking in. I gave him a brief run down of what was going on and wham he was off the phone with me to make calls. About that time Dr. D’s PA came back in to let us know that surgery would be sometime after 2 o’clock on Monday. Nothing to eat or drink after midnight. What a long night that was.

Monday I tried to stay calm, key word try. So as I am sitting there cruising on the internet and out of the corner of my eye I see someone walk into my room. When I look up guess who I see? Trey, my big brother…can you believe he drove all the way from North Carolina just to see me! Know let me re-phrase that. I can believe he would do something like that because that is just the type of person/brother he is. But still, he was there. He was there to cheer me on. It almost made me cry. I had to get out of bed and give him a huge hug!!!!

So we wait, and wait and wait. 12 o’clock turns into 1 o’clock and 2 o’clock turns the corner into three. Now my nurse has told me that they will give me an hour or so “heads up” before they come get me. HA HA…yea right. Mom and I are talking about something and there is a knock on the door. Two ladies dresses in OR scrubs are there and say they are ready to take me to surgery!! So much for that hours heads up, LOL.

I will continue the rest of this and tell you about the surgery in the next blog.

In the Hospital

In the Hospital




Life is like a Country Music Song I have determined. Right now mine would be…
“If your going through Hell”

Well that’s not the name of the song, I think but that about sums up what’s going on right about now.

We got to Baltimore around 1:00 today. We have definitely found the trick to the traffic pattern. The only problems we ran into were a little outside of D.C. and that was mostly because it was a monsoon of rain. We headed over to Dr. D’s office and sure enough they knew I was coming in and said they would work me in asap. We did have a bit of a wait but that was not a big deal.

She came in and right away said she was glad to see me and that I had made it here without incident. She took one look at me and felt my neck and said we need to put you in the hospital.

Based on the neck stiffness, low grade fever, headaches, overall achenes, and redness along the shunt path signs were pointing to a shunt infection. But without putting me in the hospital and running numerous test, labs and procedures she has no way of knowing.

One interesting and I think funny (if you can find any of this funny) part of our
Conversation with her is that she said she has not had a patient with a shunt infection in over four years and she has never seen on a patient the redness along the shunt path. To this my reply to her was, and I kid you not I did say this was “well you’ve never met me before”. Let’s face it people I am like the walking black cloud these days!

Back to the appointment….

What she is afraid has happened is that the shunt has become infected. The infection that she is worried about is Meningitis. If the test results do come back as Meningitis then, well it’s not going to be an easy rest of the month for me. Basically if it is positive they will within 24 hours take out my current shunt, surgically. Then I will need to have time to heal and let the antibiotics clear the infection in my body, this would be approximately 10 days. Once the infection has cleared then I would go back into surgery for placement of a new shunt. For all of that I would have to remain in the hospital. With meningitis there is no playing around.

Wes asked her if the shunt is not infected what else could be going on? Her answer was that she just did not know. See, this is my I love Dr. D. She is honest. She does not try to be super Doctor know it all. Sometimes the best answer is “I don’t know” and “We will have to go from there” In my opinion this is one of the many attributes that make her such an amazing Doctor.

So she left her office to make a few calls and to get us a room at Sinai. I don’t think Wes and I said much in the time that she left, heck what was there to say at this point?

She came back in and told us that a room was not ready yet but to leave our cell phone number and they would call us as soon as one was available.

On a good note, if there is one is that the bleeding in my brain and from the ventricle has completely cleared up and dissipated. So, in theory I should have a working shunt. Hmmmmm. Also, while in the hospital Dr. Williams my Neurologist, whom I adore, will be coming to see me.

So we left her office to get something to eat since we had not eaten since we left early that morning. We also had to make a zillion phone calls to let everyone at home know what was going on. Well, let me rephrase that, Wes has a zillion calls to make. LOL

Side note- If you ever see a restaurant called Noodle & Co I highly recommend it, very yummy!

After eating we headed to the hospital and I told all natural sunlight adios!
Since being admitted it has been a whirlwind of activity.

First off Dr. D’s PA came in and did an extensive evaluation. She was very nice btw. Then for all the blood work. I was expecting normal blood work. Ummmm, I was wrong. You know those nice little tubes/vials at the Doctors office that they usually put your blood into? Well, those were no where to be seen in my room. In the place of that were collection bottles. Yes people, collection bottles. They were the size of the mini glass coke bottles and upon seeing them Wes left the room and I thought my eyes were going to bug out of my head. But I survived just fine.

I will have a spinal tap Thursday morning. They will test the spinal fluid for infection. I hate, I despise spinal taps. I know that I will inevitably get a spinal headache and that my back is going to be in flaming pain. I already have a killer headache so this I guess will just be adding insult to injury.

They have not started any I.V. antibiotics yet, and with good reason. They want the blood work and spinal fluid to show them a true/unaltered specimen of what is going on. If they had started me on antibiotics then the spinal tap would not show them a clear picture of what the infection really is. But, as soon as the tap is done I will be staring I.V. antibiotics. I already have an I.V. line in place ready to go. The antibiotics they will be giving me are the same they would give me if they knew I did have meningitis. They do not want to “wait and see” my health cannot afford a wait and see approach.

That sums is all up.
Whew…..

Sigh…

I cannot believe this is happening.

When does this nightmare end? This is a really bad ride and I want off.

I am trying to stay positive. Believe me, I am. But frankly it’s getting a little tough. Everything and anything that can go wrong, does go wrong. To make matters worse this time I am hundreds of miles away from my family. I am miles away from two precious little faces that cannot begin to understand why Mommy is not there. I missed there first soccer practice tonight. Tomorrow I am going to miss their Open House at school. I am not going to be there for the first time ever for them to meet their teachers! I am missing so much. I am missing them with every beat of my heart.

It’s not fair…..this whole damm thing is so not fair!!!!!!
I want my life back. I don’t think that is too much to ask.
But here I sit in a hospital, yet again, waiting to see if I am going to have not one but two surgeries. My head and neck feel like vice grips are on them and my body aches from head to toe. What does it feel like to feel good? I don’t know anymore, and I can’t remember anymore.

Sigh……….

Just when you think you are over the hill something comes and slams you back down again. I know that I have two choices in the matter. I either sit at the bottom of the hill and cry and scream or pick myself back up and trudge up the hill again.
I choose to trudge up the hill. It may take me a while and I may kick, scream and cry the whole way up but I will get to the top. One day…..I am going to make it to the top of the hill and not fall back down. One day I am going to conquer this hill.

Fred Flintstone

Fred Flintstone


Welcome to Bedrock!!!

Well my ankles are welcoming you that is. They are more like cankles at this point. They are swollen and hideous. It’s a good thing it is summer and I can wear flip flops because there is no way these puppies would fit into a pair of shoes.

I woke up on Thursday and right away noticed how swollen both of my ankles and legs were. Of course I was panicked by this. After a couple of phone calls, off to my PCP it was. Considering that I had just had major surgery and the swelling was severe he was concerned that I may have developed a blood clot in my legs. The only thing that made him think it may not be that, was the fact that both ankles and legs were involved. He sent me off to the hospital to have an ultrasound done on both legs to rule this out. While I was going to be there he went ahead and ordered the CT head scan and X-ray of the abdomen. (one less trip to radiology works for me)

The results can back pretty quickly from the ultrasound…no blood clot…that’s good! Now what is causing all the swelling? After looking at all the meds I was taking we think we may have found the culprit, a muscle relaxer. One of its rare side effects (like less than 1%) is swelling. So no more of that for me…easy enough right? Wrong!!
BTW- The CT of the head showed that the bleed in the head was still there but it had not become any larger.

You would think that simply stopping that medicine would solve the problem, yeah me too. Well the problem is still here and it is now causing my hands to swell!! My poor feet almost look square they are so swollen. As of this evening my calves are swollen and very sore. None of this can be good. I may not hold a medical degree but I do know that something is not right. It goes without saying that tomorrow I will be headed to the Doctor…again

For everything else well…..I had a horrible headache most of today, my side is killing me, and the whooshing has come back in my ears sporadically. Wes goes into work tomorrow for a three day trip and the girls are with there Dad until next Sunday.

Sounds really gloomy but on a positive note…the sun rose this morning and so did I.

Falls into place. Falls into peices

Home sweet Embassy Suites Home!!!

Considering it has been some form of residence for my parents, Wes, or me for almost a week now.

I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...

So to be honest this has had me in a not so lovely mood.

As far as how I am feeling? Well do you want a sugar cookie answer or the truth?

Ha Ha...you know I am going to give you the truth.

I feel horrible. But hey, what do you expect? I just had brain surgery.

My symptoms and pain are still here....they left for a little while but then they came back....why?

I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.

Well that all went to shit pretty quick.

It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.

This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.

Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.

#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.

#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.

#3 and most important- The headaches were gone for 2 1/2 days, now they are back.

This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.

So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.


Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.

Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.

I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.

The problem now, is that I keep falling into pieces.

All New Parts for Me!!!

All New Parts for me!!!

Surgery went well yesterday. Thank God.

The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!

But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”

LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.

After all that excitement it was time for surgery. Off I went.

The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!

He tells me what they did..in a nutshell here we go.

The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.

Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.

Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.

I don’t remember a lot about being in recovery and that’s probably a good thing.

The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.

Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.