Todays visit and the not so good verdict...............

As most of you already know, things have not been easy since my last surgery.
Each day I feel worse and worse. I have completely neglected my family, friends, my church and abandoned all hopes of having a clean house!! (if you know me personally - this is bad)

I have been across the bay so many times in the past 4 weeks  to see my Dr that I am contemplating getting an apartment over there.

Last Tuesday I went in for a follow up appt and after taking one look at me, he immediately sent me to have a CT of the abdomen and a X-Ray like test.

I knew something was wrong. My head hurts to just turn it from side to side and you can forget about bending over to pick something up. Not to mention that it appears I am ready to give birth a record setting size child or possibly small safari animal. (The fact that 2 weeks ago while in CVS a lady congratulated me while reaching out to touch my belly - does not help!!!)

Late Friday my Dr called me to tell me he would like me to come in first thing this morning to discuss the results of the test. Upon arriving at his office today, and waiting 2 hours to be seen (I know this is off track - but 2 hours???!!!) he told my husband and I that the shunt has come out of the peritoneal cavity and is now coiled up in my abdomen causing the CSF to back up.  There are two "hypottenuating cysts" over 9 cm x 7.2cm in size. One in my pelvic area and the other "anterior to right rectus abdominis muscles". In English - I have two massive fluid filled cyst in my stomach and fluid is backing up around my brain and in my spine. This my friends is what we call a shunt malfunction. One of the very reasons I did not want to have this put in to begin with.

 My solution - TAKE IT OUT!!!!!

Well apparently this is not a very good solution and DR. M was not going for it. He told me that if I take it out I will go completely blind in just a short period of time. I would never be able to live with myself knowing that I could never see my sweet children's faces again.

So......... shunt revision #2 here we come. He will have to re-open the incision on my back and make a new one on the opposite side of my stomach. They will then try to tunnel the shunt through "virgin" tissue and pray that it stays in place and my body will begin to absorb the excess fluid.
Of course, I am not to thrilled with the idea of another surgery and I am very concerned about the possibility that this will not work, again.

As I looked at him teary eyed and expressed my concerns, reservations and I knew he was more than just some surgeon sitting listening. He, also teary eyed, cares. He really cares about my well being and wants to make sure that I continue to live life to the fullest. He is doing what God called him to do.

While I may not feel at peace with what the days ahead have in store for me, I am at peace knowing I am right where God wants me to be and for now that's good enough.

Post Lumbar Shunt Revision X-Ray

Below are pictures taken today (9-6-11) of my Lumbar Shunt during a X-Ray. Since I am still having swelling in my abdomen and around the valve my surgeon wanted to get an X-Ray to ensure the tubing has not come loose. According to him the tubing looks good and we just need to continue to watch swelling to see if my body will "adapt" to this foreign object or not.
So since I begged the tech for the disc I thought I would share these images with you.

This was taken from the side (Right to left) and as you can see there is ALOT of swelling in my stomach and the tubing itself appears to just be under the skin of my belly button. I must say I was surprised at the amount of "shunt" inside of me.

This image is taken from the front and the shunt shows up a little clearer here. This picture now explains why my right hip has been hurting so bad as it appears the tubing is very close to my hip bone. Again, can not believe how much tubing there is!!!



And last but not least is another side view (left to right). Here you can clearly see how big my back bulge, I call him BOB, really is. This image of the tubing is not very clear.

I know must of you probably think I'm crazy (this post I'm sure has nothing to do with that perception) but I really am a visual person so being able to see what's inside of me has really helped to understand it's purpose and meaning.

However, at this point whether I understand it or not I do not think my body likes it and I really afraid that even after 10 revisions my body will not accept it. While I continue to pray boldly that this is not the case I am also a realist, so if I do not show signs of improvement quickly then I think it will not be long before I'm checking back into my sterile resort for revision #2!

Thanks for continuing to let me share my story with you all!

Many Blessings,

Jessica

Emergency Revision #1

Well after one emergency surgery, 2 additional incisions and 11 lbs of CSF (Cerebrospinal fluid) removed from my abdomen - I'm finally home!
I guess in order for you to know whats taken place over the past few days, I have to go back to the beginning of last week. I will do my best to try to accurately explain what has happened, but this past week has been a complete blur so forgive me if I leave something out.

Since having the setting changed on my LP shunt on Aug. 22, the swelling at the incision site on my spine and my stomach continued to INCREASINGLY get worse by the minute. (I would post pictures of how big they were but unfortunately I've already seen the look on my family's face as I forced them to repeatedly look at it and I do not want to cause any vomiting so early in the morning!) My headaches continued to worsen and I was at the point where I thought I would just die if I did not get some type of relief soon. I immediately began trying to get ahold of my surgeon as I knew something was not right.

On Wed., August 31, my surgeon's PA called me to see how I had adjusted to the new setting, unaware of the messages I had been leaving. When I began to explain what was going on she immediately told me to come into the office the next morning to see her. She also advised me that she would try to get a ultrasound set up for after my appointment to look at the shunt and make sure everything was working properly.

The next morning I decided to go into work for a few hours before my appointment. By the time I arrived at the office the surgeons office was calling me asking if I could come to the hospital first for the ultrasound. Since it's about and hour away I told them I would be there as soon as I could.
I arrive at USA Hospital and was immediately taken back. One panicky tech and 45 min. later I was on my way the see the surgeon. I did not even get through the office doors and he was standing there with his PA and a resident asking me to lift my shirt so he could take a look. Immediately, he told them to get general surgery on the phone and set up surgery for first thing the next morning. This is when the waterworks show began. Surgery? What? WHY??

Apparently because of previous scar tissue from my C-section, of my second child, my body was not absorbing the spinal fluid as it should and I now had a large pocket of fluid accumulating in my abdomen and backing up into my spine. "The fact of the matter is if we do not get it out it will become septic!"
I left his office a complete emotional basketcase and looking back now wonder what those driving beside me on I-10 thought as I sobed hysterically while driving 40mph. I did not want another surgery! I've only had this stupid thing in for 8 weeks and somethings already wrong!
Surgery was set for 11:00 the next day. As I re-played the days events in my head, all I could think is "Please God - don't let this be happening." But it was.
My husband raced home from Georgia, my sister agreed to pick up the girls from school and my parents were all set to be at the hospital with me.

As I was being prepped for surgery, so many things were unclear. Nobody could tell me exactly what they were going to do, how long it would take or what the chances of this happening again are. All they knew is that the shunt had to be moved and the fluid had to come out. How they were going to do this, they were unsure of until they got in there.

The surgery took a little over 3 hours, I think, and they moved the tubing to above my liver. The ended up removing over 11 lbs of fluid from my abdomen and having to make an incision in my belly button and re-open my already sore abdomen scar. I awoke in so much pain that even the 10mg of morphine every 2 hours offered no relief.

I am bruised from my back around to my belly button on the right side, my right hip feels as if they repeatedly hit it with a bat while I was asleep and the pain in my abdomen alone is enough to make me want to curl up in a ball and cry. (However, I am positive this will only make the pain worse.) Two days in the hospital with some amazing nurses and I was able to come home yesterday.

I am still not exactly sure if the tubing came loose from the valve or if my body is just not capable of absorbing the spinal fluid. I was not able to get a real clear answer out of anyone I asked. I do however know that I hope this is the first and last revision I ever have to undergo. While some may think lying around and being waited on hand and foot is the life, I must say it's not the life for me!!

I would not wish this pain or this disease upon anyone or anything. My heart breaks for the children who suffer in silence or who are mis-diagnosed with this. Unfortunately, there are not alot of options when it comes to those suffering with ICH and AC. So for now I will pray that medical technology continues to advance each and every day and the God lays His every loving hand upon those who are suffering and is able to offer them some type of hope and relief for a pain free future!

Many Blessings,
Jessica

First Adjustment

Well it has been a little over 7 weeks since my LP shunt surgery and while I hoped and prayed this was going to be the answer,  now wish I would have never had it put in, in the first place!!!

My symptoms have all returned with an angry vengeance and are becoming less and less bearable. My head hurts so bad that I am wondering if is not worse now than it was prior to having the shunt put in. With Corey working out of town that leaves me to take care of the house and kids by myself and it is virtually impossible to do so while feeling the way I do.

I had my first adjustment to the valve on Monday at the Neuro's office. It took the PA about 15 min and was completely painless. She simply took this magnetic machine and moved it across the incision site, on my back, that then changed the setting of the valve. They turned down the setting, therefore allowing more fluid to be released through the shunt. Now the pressure will not have to get so high before it starts to drain. However, changing the setting is like starting all over again.

Over the last week I have been running a fever off and on, have severe low pressure headaches and the incision sites on both my stomach and back are swollen. My back looks like someone surgically inserted a grapefruit under my skin. It is so big and so tight that I am afraid it is going to rupture. I can not lay flat because it hurts extremely so bad. My stomach looks like I ready to birth a small elephant, but only on the right side. I have gained 12 pounds since the surgery and its all fluid retention. For some reason my abdominal cavity is not absorbing the fluid like it is supposed to.Words can not even begin to describe how uncomfortable I am right now.

When I saw the neurosurgeons PA last week I was told that sometimes it takes longer for your body to adjust and not everyone reacts the same as others to having the LP shunt. The fluid is not draining properly through the tubing and instead is accumulating around the valve (back) and incision site on my stomach. She immediately sent me to have an X-Ray to ensure the tubing was not tangled. I heard back from them two days later saying that the shunt itself looks good and if the fluid does not begin to subside they will do an abdominal ultrasound which will be able to provide more answers than the X-Ray can. I am not sure if they can see if the shunt is blocked through the X-Ray or not, I guess I will know soon enough. I was able to look at the X-Ray and I have to say I was shocked at the amount of tubing that is in my stomach. It look like a ball of yarn shoved into my abdomen. Even the X-Ray tech was taken back by the amount of tubing in there. As gross as it sounds, I have to admit it looked pretty cool!! :)

I did return back to work, part time, about three weeks after the surgery and now I am beginning to think I jumped the gun (as I often do). Simple tasks like sitting up are requiring far to much energy. I am so tired after being up for just a few hours and am then required to lay flat for several hours. This is making it very difficult to accomplish anything and unfortunately everyone and everything in my life is being neglected right now.

I hope that my doctors are right and eventually my body will get adjusted to this new device and I will begin to feel the relief I hoped and prayed would come. For now I will continue to suffer through the non-stop  pain and do the best I can with the cards I have been dealt.

Better explination of IH

 

The following information is taken right from the Intercranial Hypertension Research Foundation's website. For more information on this condition, how you can help and resources for those who suffer with this condition, please visit them at  http://ihrfoundation.org/.

I encourage you to seek out medical help immediately if you, or someone you know, has been diagnosed or may be suffering with this condition.

Life is to precious to waste!!

"Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension. We also provide assistance, education, and encouragement for individuals with chronic IH, their families and medical professionals.
Our mission is to discover why intracranial hypertension happens, along with new, effective treatments. Our ultimate goal is to find a cure."

Living with IH

"Like any chronic illness, chronic IH can impact both individuals and families physically, financially and emotionally.
If you’ve been diagnosed with IH, it’s important to know that this illness affects everyone differently. An IH diagnosis doesn’t necessarily mean that you will have to stop working or going to school or participating in activities that you enjoy. At the same time, it’s important to take of yourself and recognize that there is much that we don’t know about this illness. The best judge of your abilities is you.
Disability is an issue, especially disability due to loss of vision and/or chronic headache. Some individuals do become too sick to continue working or going to school. Simple, everyday tasks can become overwhelming and a formerly independent person may have to rely on others for help.
However, it’s worth repeating that each person’s experience with IH is different. Some people may experience a remission of their symptoms. For others, chronic IH can be cyclical, a pattern of remission and reoccurrence. And for some, the illness is truly chronic and does not go away. With research, we can learn more about the natural course of chronic IH. 

“But You Don’t Look Sick.”

Much of the time, someone with chronic IH may not “look” sick. Physical appearance can often be misleading and is not a good indicator of how well or sick a person with chronic IH may actually be.
It’s also important to remember that signs of chronic IH, such as papilledema, occur within the body, rather than externally and symptoms like a headache can only be felt by the person experiencing it. So, it’s not unusual for patients to feel frustrated when they try to convey their painful circumstances, despite looking “okay” on the outside. It can be equally frustrating for friends and family, who want to understand what is happening to their friend or relative.
Another mystery of chronic IH is that it can be variable. Sometimes, feeling sick occurs in waves. It’s quite possible to feel better for a short period of time, and then, feel worse again or vice-versa. (Sometimes this can happen in a short span of time, i.e. 5-10 minutes.) One hypothesis is that these variations may be due to fluctuations in CSF pressure. A sudden change in behavior or capabilities may be a sign of a change in intracranial pressure.   

Depression

Chronic illnesses in general and neurological illnesses like stroke have been associated with higher rates of depression. A 2007 study from the University of Toledo in Ohio recently found a high prevalence of depression among women with chronic headache. While there has not been formal research directly linking depression and chronic IH, it’s not uncommon for someone with chronic IH to experience depression.
Changes in sleep patterns, appetite, loss of motivation and self-esteem, feelings of guilt or blame, irritability and anger may be signs of depression. Recognizing depression is the first step to getting help. Counseling, especially with someone who has experience with issues relating to chronic illness, may be helpful. If anti-depressant medication is prescribed, it’s important that all doctors know about any other drugs that you are taking, especially other anti-depressants (such as tricyclic anti-depressants like amitriptyline, which may be used to treat chronic headache pain) that can potentially interact.
 

Financial Resources

The costs of medication, surgery, hospitalizations, doctors’ visits, and other medical expenses related to chronic IH can be significant. Loss of a job or wages as a result of being ill does not only impact income but since many people rely on employer-provided health insurance, it can affect health insurance coverage. 

There are government resources to help you find free or low-cost medical care and assist with your bills, including Supplemental Security Income (SSI) and Social Security Disability (SSDI). Many drug manufacturers run prescription assistance programs that provide free or discounted medication to those who are uninsured. In addition, certain religious groups also run social service organizations that help members of the same faith. If you belong to a church or religious institution, they often have resources to help parishioners or can direct you to places where help is available."

May God Bless all of you who suffer, have family member who suffer or have lost a love one to this disease! I will continue to keep all of you in ,my daily prayers.

God Bless,

Jessica

Three Weeks Post - OP

It has been almost 3 weeks since my shunt surgery and so far everything is "going way better than anticipated". The bruises are slowly fading, incisions are healing and the pressure in my head is starting to stabilize. There are a few new things I am going to have to get used to, such as the feeling of the tube draining the CSF into my stomach and the control valve bulging out of my back, but overall it is a small price to pay if it ultimately does what it is intended to do.

My neurosurgeon was absolutely amazed at my progress when I visited him last week for my post-op visit. He said my incisions were healing wonderfully, my bruising was minimal ( glad he thinks so) and all of the swelling will eventually go down. This was all music to my ears - especially the swelling since I have yet to be able to squeeze back into anything that does not have an elastic waistband. But more importantly than all of that - THE SHUNT SEEMS TO BE WORKING!!!!!!

While, yes, I do still have headaches they are not crippling. My head does not feel as if it is going to self combust at a moments notice. My eyes do not feel as if they are going to blow out of my head and my ears have finally "popped" back. I can hear! Yippee!! All great news!


Dr. M told me while he was amazed at my progress, especially given the fact that they had originally thought I would be down several weeks and after 2 weeks  he released me to "light" duty, he was not surprised. Apparently he has become well aware of my stubbornness and has learned that it is going to take alot more than a little brain or shunt surgery to keep me down!

While I would like to think I have gotten through this last few weeks all on my own, I know better. I know it is by the Grace of God that I have gotten this far. He was there guiding Dr. M on 7/7 @ 7, He was there lifting me up when I felt weak and He was there when I felt like I could not go on any further. But most importantly - He was there because all of you lifted me up in prayer and asked!

"For where two or three come together in my name, there am I with them." Matthew 18:20

I can affirm that I know I would not be this far in my recovery if I did not have all of you in my life. For that I am eternally grateful!!

To all of you who have called / text and checked in on me - THANK YOU!!
To all of you who have sent cards - THANK YOU!!
To all of you who have unexpectedly dropped off a hot delicious meal - THANK YOU!!
To all of you who have picked up / dropped off / kept my kids - THANK YOU!!
To my sweet "K" who has stepped up and been such a huge help - THANK YOU!!
and To my parents who have been here every step of the way the last few weeks making sure me and my girls had everything we could possibly need - THANK YOU!!!

May God continue to bless all of you as you have blessed me!

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