>> Monday, March 30, 2009
Tomorrow I am having surgery to replace two valves I have on my shunt (that regulates the flow of spinal fluid that I produce in my body - which is too much for my body.) Last night Mari was doing some research on IH (Intracranial Hypertension) and she shared with me. This was the best website I've read that described me almost to a T. I thought, since IH is so unknown, that I would share with you. Maybe you will come into contact with someone else that has IH and you will know what it is. So that is my goal.
Here is the link if you would like to research more yourself but I will just share some things I thought is a good overview.
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).Oh my! I just found a video. What is really sad is that IH affects young kids and teens, too. This video shows that. And the operation this boy is having is a VP shunt which is placed in the head. I have a LP shunt which goes in my spine and I have valves in my left side that my doctor can get to so he can relieve pressure for me when I need it and tubing runs in my stomach to give the overflow of spinal fluid a place to go. So now ya know;) I can't watch this video without crying. IH is rough. Really rough as any that deal with me at all know personally.
What is it like to have chronic IH? Sometimes, it’s hard to understand what a friend or loved one is going through with this illness. The following are some helpful suggestions for friends, family and caregivers submitted by IH patients.
1. Be a good listener.
It’s difficult to watch a friend or family member deal with a chronic illness that is not well-understood. It can be an incredibly frustrating experience for everyone involved. Sometimes, the best thing you can do is simply listen, without any judgment, and understand that the person who you care about is still there, despite this illness.
2. Avoid comparisons.
Chronic IH is a very real and disabling illness. But its effects are not necessarily seen on the outside. A person with chronic IH may look okay but feel terrible. As a result, the seriousness of chronic IH is often downplayed. Old names for the disorder like “pseudotumor cerebri” and “benign intracranial hypertension” only add to this misinterpretation. There is nothing “pseudo” or “benign” about this illness or the pain and disability that it can cause.
3. Be an advocate.
There may be times when you literally find yourself acting as an advocate for your relative or friend, who may be too sick be his or her own advocate. If you are a caregiver, you may be the person who helps relay your relative/friend’s medical experiences to a physician. It’s helpful to document that information, in a journal or daily record.
Educating yourself—and other people— about chronic IH is also important. Don’t be afraid to ask questions of physicians or seek out others if you feel your questions have not been answered satisfactorily.
4. Know when to give advice.
It’s normal to want to help others who are suffering or in pain, especially when it’s your daughter or your best friend. But sensitivity is important. A chronic IH headache is still very mysterious. We do not know what causes it, though lowering intracranial pressure often brings relief.
There is still a lot to learn about this disorder and its effects on the brain and body. Keep in mind that an IH headache does not usually respond to traditional headache remedies and pain medications. For some people with idiopathic IH, weight loss does not always make their symptoms better. When in doubt, first ask questions about your friend or relative’s experience. Then you can gauge whether to offer advice.
5. Today is today.
Chronic IH is unpredictable, which means that there will be good days and bad ones for the person who is ill. It’s hard to know what your friend or family member will feel like or what tasks he or she will be capable of tomorrow, which is why it’s best to concentrate on the present. Be patient because abilities can change quickly; it’s not intentional but the nature of this illness. At the same time, never give up hope that the future can bring long-awaited answers and better treatments for your loved one.
All of the above was from the Intracranial Hypertension Research Foundation from the link above. There are pins that can be ordered to help support the research foundation also, if that interests you. Thank you for taking time to read this post and thank you for your prayers.
Below is an old challenge entry I had written for Faithwriters when the topic was FEAR. It's become my testimony to living with chronic pain, I suppose.
Dragged into the darkened room I could feel beady eyes all around. Sweat poured from my body; a dark, menacing odor pervaded my senses – raw fear and dread. I stood, head hung, unable to look my accusers in the eye. The jury’s verdict: guilty. I was handed a life-sentence with no chance for parole.
My crime: genetics. Up to the time of the verdict I was a relatively healthy woman of thirty-seven but that drastically changed as I was fitted with a court mandated electronic bracelet — a headache. This was no ordinary headache. It grew from a small ‘niggle’ to a raging beast that savagely dug its talons into my brain and would not let go. Just like pesky relatives, the headache pulled up the drive in a camper, set up a flag bearing skull and crossbones, and claimed not only my head but my life.
I suffered over five years and during that time I sought medical advice from doctor after doctor and was prescribed countless medications before I was finally diagnosed with something other than ‘chronic headaches.’ Days and weeks at a time I would forget who I was, a Daughter of the King, with the promise of a glorious place waiting for me in Heaven. At other times, thinking of Heaven was my only means of escape from the unrelenting pain.
The plaintiff was the devil seeking to destroy my life and in many ways he did. I lived in constant fear of the future, uncertain of the challenges that lay ahead. I merely existed through the bleakest days and unbearably long nights. Built up pressure in my head caused severe dizziness and foggy thinking. Every nerve of my body screamed to be left alone. With my head pounding and my stomach rolling I appealed the sentence crying out to God for leniency. “Why bring this charge against me? I’m tired of living in this prison of pain. I can’t go on, not one more minute. Please take it away.” My defense attorney, Jesus, was my constant companion. Bleak as life was, my faith was growing faster and stronger than I could ever have imagined.
It took the right doctor to listen to my complaints and give the correct diagnosis and then was confirmed through a spinal tap. I had my answer! The condition: Intracranial Hypertension. The symptoms: extremely painful and disabling headaches due to high levels of cerebro-spinal fluid. I am one of 100,000 women to suffer the affects of this life-changing illness. How amazing! After years of living in fear of the unknown I finally had an answer. The cure: I was told to lose weight and take a water pill to bring down the fluid. Over the months I lost the weight but still had unbearable headaches. After much begging and pleading through e-mails and phone calls, my doctor agreed to surgery.
I am now a proud owner of a body installed with properly functioning hardware, a shunt; however, it did not come without a cost. Recovery was long and hard and months later the headaches were as fierce as ever. Aware that the shunt might not correct the problem I clung to the belief that I had made the right choice. God had worked countless miracles in my life and I refused to give up hope.
It has been a little over a year after surgery, a year of more trials and tests of faith than I could count but I am relatively pain free. The ‘niggle’ remains in the background much like static on a TV screen. The old pain haunts me three or four days each month but it serves as a reminder of how I used to feel every single moment of my life. Tracing the embedded tubes down the length of my side also reminds me that IH is a chronic condition and headaches will always be a part of my life as could problems with the shunt.
My life is slowly returning to ‘normal’. I’m living and rejoicing, taking care of my family and have returned to work. I continue to live out the consequences of the higher court’s decision but it has been drastically scaled to manageable – thanks to my Heavenly Father and my ever present defense attorney, Jesus.
(Today the pain is almost as intense now as before the shunt. Shunts are definitely NOT the answer. And no pain medicine gives relief. Please pray for all those that have IH. It is literally a big pain. Thank you, thank you!)