The Surgery

First things first........THANK YOU to each and everyone of you who said a prayer for me the morning of my surgery. I will never be able to put into words the overwhelming sense of peace I had that morning knowing that I had so many of my friends, family and even strangers all praying for a successful surgery!!

I arrived at the hospital, a little nervous, at 6:00 a.m. as instructed with my husband and my sweet "K" in tow. Immediately upon my arrival I came face to face with a 19 year old boy who was also set to have surgery. This young man had been driving over 90 mph and drinking when he wrapped his car around a tree. He had rods and pins sticking out of his left leg and was getting ready for his 3rd surgery. As we waited in registration I could not help but think about what him and his family must be going through. As I prayed for God's hand to be with him and his doctors that morning and the days to come, I realized how blessed I am.

They called me back to begin the prep pretty quickly and it was not long before JB came for a group prayer and I was saying my goodbyes to my sweet family. I was even blessed by a visit from 2 strangers, who were nurses and had seen the prayer request on FB, prior to being whisked away.  The last thing I remember is the very kind anesthesiologist saying he was going to give me something to help me relax and they would be putting me to sleep soon. 
When I awoke in recovery, I was in alot of pain. As I opened my eyes, my first thought was what had they done to my stomach because it felt like they had taken a skill saw to my abdomen. It wasn't long though and the recovery nurse was giving me something for pain and I dosed back off. The recovery room, however, is not a place to rest. It is filled with nurses running about and patients being wheeled in and out from various surgeries. I must say though, I commend all of you who work in this profession because some of what I saw and heard was not easy to swallow and the nurses there handled each and everyone of the patients with grace.
It was several hours before I was moved upstairs to a room but the recovery nurses allowed me to see all of my family, who had been waiting ever so patiently for the outcome.
According to Dr. M, everything went "perfectly and better than expected"!! (I think alot of it had to do with all of your prayers) The surgery itself took less time than expected, he was able to get the shunt in with no problems and was confident that I should have a far less expected recovery time than initially thought. PRAISE GOD!!
He did tell me later that he had to physically move a few muscles around in my abdomen and thread the catheter from my stomach to back with a metal rod, so some bruising and tenderness would be expected. But all in all everything looked good. He wanted me to get up and move around, as tolerated, as this would speed up the recovery process. What? No lying flat for 10 days?? This WAS good news :)
The first few days following the surgery I was in a severe amount of pain. But the good news is that it is incision related and not severe pain from my head. Yippee - maybe the shunt is working.!!
I have been having low pressure headaches but they are more uncomfortable than painful and nothing in comparison to what they were like prior to last week. My legs and hips hurt really bad upon standing, but I am told this is from the swelling of the nerves around my spine and should go away in a few days. My stomach is still real swollen (I do not foresee putting pants on anytime soon) and I am very tired. But I am not vomiting upon standing, no ringing in my ears and my head feels better than it has in years!!
I have yet to be able to stay upright for longer than a few hours and I am still spending more time in the bed than out, but I think alot of this is what you would expect with ANY surgery.
 I am hoping that another week of resting and taking it easy and I will be able to begin to resume somewhat of  "normal" activity.
So for now, I am praising God that everything went better than initially expected and I am looking forward to whatever  tomorrow might hold!!

Many Blessing,
Jessica

LP Shunt

So Tuesday was the BIG visit with the Neurosurgeon. I have to say the overall the news was very encouraging!! Given my current vision, which is basically none in my right eye, the decision to do a lumbar shunt was made, within the next week. The encouraging part: No skull drilling, no head shaving, less recovery time and the duration of surgery is significantly less.
So what does this mean???
Well, they will insert the "catheter" like tube and silicone mechanism you see above into my lower spine area. It will have a larger tube, at the other end,  that will then drain the excess CSF fluid into my abdominal cavity, where it will be absorbed. The control valve, which has 5 settings,  will be placed under the skin next to my spine and can be adjusted with a magnet, if needed. Three small incisions (spine, side and abdomen),  hour to two hour surgery and a few days in hospital! All good news.
The tough part will be the days to follow coming home. For 10 days I will not be able to do anything at all. (If you know me then you know that this part is going to be extremely tough.) The reason for this is to allow your body to adjust to the new CSF pressure. They will set the drainage to a medium level, to begin with and it must stay there for about 30 days. If I am not feeling any relief after the first 30 days then they can adjust the drainage, in office, with the magnet.
The worst part of this is I can expect to have what is called a low pressure headache for the first few weeks. This is considered normal. Painful but normal. This is caused from the drop in CSF pressure levels and can be unbearable.
The brain normally sits inside a “bag” filled with spinal fluid which extends down from the skull into the spine. The “bag” consists of membranes called the meninges (as in meningitis). The CSF fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low, the brain may “sag” downward when the patient is upright, stretching the meninges and nerves lining the brain and causing SEVERE pain.
These are the same type of "headaches" I get after a spinal tap and from what he said, until my body gets accustomed to the lower pressure, I will have a continual "spinal" headache. This is the part I am not looking forward to the most.
There are of course risks and complications as there are with any surgery, but I really think the benefits out weigh them at this point.
However, I know that once I get over the initial "hump" things should increasingly get better. The goal is to have my vision be somewhat restored and the daily pain subside.
I am truly blessed to have such a wonderful support system, whom I could not get through the day to day without. I know that with them and God by my side I will be able to survive those first painful days and I look forward to a much brighter future ahead.

Conditions..Conditions..Conditions.. PART II

Ok.. so now you have a little insight as to the medical diagnosis in which I have been labeled (See earlier post). Now let me tell you a little bit about how this effects my normal day to day life.
While asymptomatic AC's are not that rare, symptomatic are. 99% of them are found during routine autopsy's after death and patients do not present with any problems. But I am part of the lucky 1% that is symptomatic.
My main AC, due to it's location and size, causes me to have such horrible headaches that I can not stand the sound of any noise or the brightness of a simple house lamp. My vision is often left impaired and I see what is know as the classical "fireworks" or floaters daily. (It is currently compressing my optic chasm therefore causing vision problems. I have almost completely lost my peripheral vision in my right eye) I can not stand the sounds of simple things and talking on the phone just heightens the pain. I am not even sure headache is a good word to describe the pain, because when most people hear that word it is often not taken to seriously.
I awake every single day this way and go to bed each and every night with my head throbbing. I have not been able to enjoy the small things with my 4 year old, like swinging on a swing. Its this type of thing I miss the most. I guess part of me has just gotten used to living this way and has decided that I will not let it control my life or dictate who I am. I work a full time job and raise (2) beautiful children. I do all of the normal things most parents do such as rush kids from practice to games, cook, clean, volunteer my time to anything my children are a part of and serve as an Elder at my church. Yes, I stay pretty busy. I do not call out of work due to my condition. But unfortunately, miss alot of work due to tests and procedures. I face each and every day with a smile on my face and rely fully upon God and not my own understanding to carry me through.
Seizures are also a side effect to the AC. While I have not had one in a while, there is still a chance and frankly it scares me to death when I do. I once was admitted to the hospital after a round of 22 seizures in less than an hours time because I could not speak. My oldest said I sounded like mush mouth off of Fat Albert.
I find that lately I become more confused than normal and my memory is completely shot. I am told this is due to the damage that has been caused by the pressure of how large the AC was before. (It was the size of a lemon. My head is barely that big so how it fit in there is beyond me?) I have been experiencing shortness of breath lately along with abdominal pain. I am sure this is in part related to the 16 daily prescriptions I take. My hands and feet stay numb and it is becoming more difficult to use my right arm.

The Intercranial Hypertension just escalates all of the above. In addition, it makes my eyes feel like they are going to pop right out of my head (that would be a sight...), constant ringing in both ears,dizziness and double vision. But the worst part about having it is that I wake up every day throwing up. I am not sure if it is the transition from laying down to sitting up that causes the vomiting but irregardless it never fails. Most days it only last a short time in the morning but others, such as yesterday, stay with me all day. Feeling like your in your first trimester of pregnancy 24 hours a day 7 days a week, is very unwelcoming. Especially when there's nothing sweet to look forward to at the end of it all.

The uncoroperative disks cause alot of uncomfortableness and neck pain that radiates into my back. My neurosurgeon thinks that part of the disk issue is related to the ICH. He believes if we can get the pressure under control with one of the many horse pills they make me take than they may subside some.However, it's to early to tell.
So for now I will continue to take my medication, take care of my family and stare straight into the eyes of my disease and tell it I am not afraid.
 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11