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