This post coincides with my post about support. It took 35 years for me to really connect with anyone else that had hydrocephalus. Now that I have formed some close relationships, I have come to realize how hard all this must have been for my family and friends to see me go through surgery after surgery after surgery. My heart breaks every time I hear about someone needing a shunt revision.
My good friend Stephanie has had her fair share of problems with her shunt recently. She is a complete sweetheart and is always there for me when I am having problems with my shunt. I can only hope she feels that I have been there for her as well. Seeing her go through all this pain just kills me! I wish that I could fix it for her. I just keep praying that her doctor figures things out and gets her feeling better soon. After all, when we are both feeling better we have champagne to drink and lots of dancing to do.
I realize that the aching pain I feel in my heart and the tears that I shed for Stephanie and my other friends with hydrocephalus are probably what my family and friends feel every time I call them and tell them that I am having yet another revision. It took me meeting other people with this condition to come to this realization. I am not proud to admit this but growing up I had the attitude that I was going through it not them. It just couldn't possibly be hard on them right? But that simply isn't true. This condition is not easy to live with and it is hard on everyone around us. I know how badly my husband and even my doctor just want to fix it. Sadly that will never happen.
What gives me hope is that I do have family and friends who support me through this complete and total madness. I want to thank all my family and friends who have stood by me through the years and have given me support. It means more to me than you can possibly imagine. Even if we don't talk often just letting me know that you are thinking about me means so much. People are often so busy these days that we don't reach out to one another anymore. Just a text, a short message or phone call could really brighten a person's day.
So thank you again for listening and letting me cry when I needed to. For anyone that may feel I haven't been there for them lately I truly am sorry. Sometimes this condition takes so much out of me. But I am going to make an attempt to reach out to others more.
This blog is about living my life with Hydrocephalus. I acquired it shortly after birth so I have many experiences to share. I will be very open about my journey. Feel free to comment, ask questions, suggest a topic for me to write about and share the posts. Please keep in mind that I am just one person out of millions. We may not all share the same symptoms and experiences but we can certainly be there for one another. Thanks for reading!!
Friday, January 30, 2015
Tuesday, January 27, 2015
My Diagnosis and Hydrocephalus Overview
At birth, I suffered a brain hemorrhage. The bleeding was in the area of the brain that doctors could not get to safely. Fortunately for me it clotted on its own. I was told all my life that the blood clot was what caused hydrocephalus. A couple years ago my current neurosurgeon told me that I have hydrocephalus due to aqueductal stenosis. At the time I looked at him like he was crazy because my family had told me that a blood clot caused it and none of my other neurosurgeons ever told me different.
Recently my husband and I were looking through my old medical records. My pediatric neurosurgeon wrote on a report that I had a brain hemorrhage at two days of age. I did have a blood clot but that's not what caused the hydrocephalus. Aqueductal stenosis did. My pediatric neurosurgeon also noted that the blood clot would go away on it's own in a short amount of time. My current neurosurgeon has been telling me that there hasn't been a blood clot in my brain for all the years he has known me. Since I don't know too much about acqueductal stenosis I can't get into that too much now, but I can explain what hydrocephalus is.
Hydrocephalus is the accumulation of cerebrospinal fluid (CSF) in the brain. It is a life threatening medical condition, not a disease. A mechanical device called a shunt is implanted into the ventricles of the brain or the lumbar spine to divert the CSF into another location of the body where it is reabsorbed. The shunt consists of a valve and two catheters. The valve either has a fixed setting or can be programmed with a magnet.
A shunt is a control for hydrocephalus, not a cure. There is no cure as there are so many causes for it. Shunts only have a 50% success rate. They often need to be revised which could mean a lifetime of brain surgeries for the patient.
Signs of a shunt failure include but are not limited to severe headaches, nausea, vomiting, changes in vision, lethargy, confusion, dizziness, poor performance in school and/or work, and personality changes. Symptoms are different for everyone.
If there is a problem with the shunt, the symptoms will not go away until the problem is resolved. The patient will not feel better until a revision is performed.
Many hydrocephalus patients have memory loss and cognitive issues. Some may suffer from depression from dealing with a chronic condition. Most have to deal with pain on a daily basis.
I had my first shunt implanted when I was almost two months old and I have documentation to prove it. My doctor had to wait until I recovered from a cold that I came down with in the hospital. My doctor felt that a VP (Ventricularperitoneal ) shunt would be the best fit for me. The distal catheter ends in the peritoneal cavity with a VP shunt. The shunt was implanted with no complications. Unfortunately the brain hemorrhage and pressure from the hydrocephalus damaged my eye muscles. I was cross eyed until the age of one when they could perform my first eye surgery. My eyes still wander to this day and I only see out of one eye at a time. Since I was cross eyed for so long my brain focused on the stronger eye, which is the left, and shut the right one off. I have no depth perception whatsoever.
Since implanting that first shunt I have had many revisions and have suffered many side effects from multiple brain surgeries. I have anxiety about being in large groups, can't handle loud noises anymore, and have dealt with depression on and off. I have short term memory loss, very little fine motor skills, balance issues and difficulty walking from a recent brain bleed. I want to share my journey with hydrocephalus to educate people and maybe help someone who has it. I will be very open about this crazy journey. Hope you enjoy!
Recently my husband and I were looking through my old medical records. My pediatric neurosurgeon wrote on a report that I had a brain hemorrhage at two days of age. I did have a blood clot but that's not what caused the hydrocephalus. Aqueductal stenosis did. My pediatric neurosurgeon also noted that the blood clot would go away on it's own in a short amount of time. My current neurosurgeon has been telling me that there hasn't been a blood clot in my brain for all the years he has known me. Since I don't know too much about acqueductal stenosis I can't get into that too much now, but I can explain what hydrocephalus is.
Hydrocephalus is the accumulation of cerebrospinal fluid (CSF) in the brain. It is a life threatening medical condition, not a disease. A mechanical device called a shunt is implanted into the ventricles of the brain or the lumbar spine to divert the CSF into another location of the body where it is reabsorbed. The shunt consists of a valve and two catheters. The valve either has a fixed setting or can be programmed with a magnet.
A shunt is a control for hydrocephalus, not a cure. There is no cure as there are so many causes for it. Shunts only have a 50% success rate. They often need to be revised which could mean a lifetime of brain surgeries for the patient.
Signs of a shunt failure include but are not limited to severe headaches, nausea, vomiting, changes in vision, lethargy, confusion, dizziness, poor performance in school and/or work, and personality changes. Symptoms are different for everyone.
If there is a problem with the shunt, the symptoms will not go away until the problem is resolved. The patient will not feel better until a revision is performed.
Many hydrocephalus patients have memory loss and cognitive issues. Some may suffer from depression from dealing with a chronic condition. Most have to deal with pain on a daily basis.
I had my first shunt implanted when I was almost two months old and I have documentation to prove it. My doctor had to wait until I recovered from a cold that I came down with in the hospital. My doctor felt that a VP (Ventricularperitoneal ) shunt would be the best fit for me. The distal catheter ends in the peritoneal cavity with a VP shunt. The shunt was implanted with no complications. Unfortunately the brain hemorrhage and pressure from the hydrocephalus damaged my eye muscles. I was cross eyed until the age of one when they could perform my first eye surgery. My eyes still wander to this day and I only see out of one eye at a time. Since I was cross eyed for so long my brain focused on the stronger eye, which is the left, and shut the right one off. I have no depth perception whatsoever.
Since implanting that first shunt I have had many revisions and have suffered many side effects from multiple brain surgeries. I have anxiety about being in large groups, can't handle loud noises anymore, and have dealt with depression on and off. I have short term memory loss, very little fine motor skills, balance issues and difficulty walking from a recent brain bleed. I want to share my journey with hydrocephalus to educate people and maybe help someone who has it. I will be very open about this crazy journey. Hope you enjoy!
Support
Growing up with hydrocephalus often felt lonely. I didn't know anyone else who had it and often wondered if people experienced the same things that I did. At times I met other patients in the hospital with it but we never kept in contact. There weren't many support groups established back then either.
In 2013 my entire world changed. I started a team for the Hydrocephalus Association walk in Portland, OR and was invited to a meeting. That was the first time I met other families with the same condition as me. At the time I was the oldest patient with it but it still felt good to share my experiences with the parents and be an inspiration to them. Because of that meeting I have formed some lifelong friendships and a new support system.
Having a good support system when you have a chronic medical condition is vital. When you can talk to someone else who has the same condition as you and can relate to experiences you've had it feels like a weight is lifted off your shoulders. At least it has for me. Also it validates that you are not alone.
Besides going to the walk every year, I am part of a hydrocephalus support group and I was a member of several support groups online. Meeting all these people who share my condition has been liberating. I can't thank my Hydro family enough for all they have done. We have shared stories, laughter, tears, and hospital visits. Oh and chocolate...
If you have Hydrocephalus and need some support check out the Hydrocephalus Association website for a support group in your area. Facebook has several support groups online. Also try to attend a walk in your area. That is a great way to connect with other people. Feel free to reach out to me. I am more than willing to listen to your story. Just remember you are not alone!
In 2013 my entire world changed. I started a team for the Hydrocephalus Association walk in Portland, OR and was invited to a meeting. That was the first time I met other families with the same condition as me. At the time I was the oldest patient with it but it still felt good to share my experiences with the parents and be an inspiration to them. Because of that meeting I have formed some lifelong friendships and a new support system.
Having a good support system when you have a chronic medical condition is vital. When you can talk to someone else who has the same condition as you and can relate to experiences you've had it feels like a weight is lifted off your shoulders. At least it has for me. Also it validates that you are not alone.
Besides going to the walk every year, I am part of a hydrocephalus support group and I was a member of several support groups online. Meeting all these people who share my condition has been liberating. I can't thank my Hydro family enough for all they have done. We have shared stories, laughter, tears, and hospital visits. Oh and chocolate...
If you have Hydrocephalus and need some support check out the Hydrocephalus Association website for a support group in your area. Facebook has several support groups online. Also try to attend a walk in your area. That is a great way to connect with other people. Feel free to reach out to me. I am more than willing to listen to your story. Just remember you are not alone!
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