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“When are they going to get this thing figured out??” 

1/8/2016

47 Comments

 
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“When are they going to get this thing figured out??” Over the past few weeks since my most recent health challenges, this is the number one question I’ve heard — from family, friends, online supporters, and people who follow my journey with hydrocephalus. And it’s a valid question, since I’ve had nine shunt related surgeries in just over three years.

And the answer, in my best no-nonsense, straight up, plain English - is that it’s complicated. 
I’m not a doctor, or any type of medical professional. I’m simply someone who is doing their best to navigate life with this very frustrating health condition, and I am going to do my best to explain to you why it’s so complicated, and what makes it difficult for me, personally. 

I believe that this may be the most important blog post I ever publish. 
Please share this article with anyone you feel could benefit from this information, and share it online to help us raise awareness. 
Thank you for taking the time to read and understand my story.

Hydrocephalus is defined as an abnormal accumulation of cerebral spinal fluid in the cavities of the brain called the ventricles. There are many reasons why an individual can either be born with or develop hydrocephalus. In my case, I have what’s called aquaductal stenosis - which is essentially a structural blockage of the passageway between two of those ventricles. This developed as I grew, for an unknown reason. Due to the blockage, the fluid is not able to properly flow through my brain, so it builds up, causing increased pressure and pain, and decreased function. 

Cerebral spinal fluid (CSF) is continuously produced in the brain, is circulated throughout the brain and spinal column, and is continuously absorbed by the body. To most people, it seems like this whole situation should have an easy fix - because it’s just like plumbing, right?? Water in, water out? Well, not really. I’m going to do my best to explain. Again, this is all simply based on my understanding, the way it has been explained to me, and the research that we have done over the years. 

They have to divert the fluid, since it can not flow properly, and the brain can’t simply absorb it. This is where the options for treatment come in, and they are both surgical. 
The most common solution is the shunt. A shunt is a system that includes a valve and a catheter, to divert the built-up CSF from the brain to another part of the body, where it can be reabsorbed. In my case, it’s diverted to the peritoneal cavity (abdomen). While this is a good fix in most cases, 50% of all shunts fail in the first 2 years - primarily from occlusion (clogging) or syphoning. 
The other surgical option is called an endoscopic third ventriculostomy (ETV). In very basic terms, they go into the brain where the fluid is blocked, and create a hole in the lining of the ventricle to allow the fluid out of the blocked area, into another area of the brain, where they hope that it will be reabsorbed. This is also a very practical solution, but you are relying on the brain to keep up with absorbing that fluid at the same rate that it is making new fluid…. and I have found that it is not commonly understood that ETV’s fail at the same rate as shunts. So, unfortunately, it’s not a permanent fix in many cases (including mine).

So here are the common questions that arise:

Let’s start with shunts. 
Why can’t they make a shunt that doesn’t fail?
Some patients have good luck with shunts, and they last years, even decades. Then there are people like myself, who only average about 3-6 months between shunt failures. The simple fact is that my body needs the shunt, but hates it. As soon as it’s placed in my brain, my body starts to try to get rid of it, to heal it out. Tissue from the CSF coats the valve(s) and the catheters, which are small, and it doesn’t take very long before it stops working. 

Why can’t they make a more sophisticated shunt that has a self-flushing feature, that could prevent all these issues from happening? 
From my understanding, there is a general lack of awareness for hydrocephalus as a condition, which leads to a lack of federal dollars being earmarked for research, which then leads to medical equipment companies choosing not to prioritize new solutions. So, for lack of a nicer way of saying this….. there’s no money in shunts. In recent years, I believe that we are making strides in this area - President Obama recently appointed federal dollars for hydrocephalus research for the first time ever. We are hopeful that with more education and awareness, better solutions will arise.

If the problem is caused by a blockage, why can’t they just go in and clean out the blockage? 
This does seem like an obvious solution, but the answer is simply that the risk-reward ratio is too high. The aqueduct where the blockage occurs is so tiny, you can’t just go in and roto-rooter it out. The risk of hemorrhage or other serious complications make this impossible.

Why isn’t the ETV a permanent solution?
The ETV is a really great option for those of us who are candidates for it - the best part about it is that you don’t have that foreign object in your brain (the shunt) that your body just wants to get rid of. If the ETV works for a patient, it can relieve the pressure, and for some patients, it can be a permanent or long term fix. However, in a lot of patients, either right away or eventually, the brain is unable to continue to absorb the extra CSF at a rate that keeps the pressure at a stable, lower level. In my case, it was 11 years.

Can’t they give you a medication to slow the production of the CSF?
Yes, they can. There are side effects involved, but it is an option that works for some. It has not been a successful solution in my case. 

Shouldn’t you get a second opinion from another neurosurgeon? 
This is one of the most common questions I get, and I try not to get frustrated by it… because it usually comes from people who are close to me, and just simply hate to see me going through the continued surgeries and the constant trauma. Here’s the hard truth - all neurosurgeons, all over the world, basically have the same options for treating hydrocephalus. What I believe, and what I have chosen to do, is to put together a team of medical professionals based on my ability to communicate with them, and my belief that they are open to my input in terms of my care. If you read my website and my blog, you’ll understand that we are choosing to be as proactive and progressive as possible. Every one of my providers and therapists strongly believe the best way for me to cope with the devastating aspects of the surgeries is to make sure that my overall physical and mental health are as good as possible. I have found my current neurosurgeon to be an excellent fit for me, personally - and would encourage all hydrocephalus patients to approach their care similarly.  

In closing:
Here’s the other thing I’d love for everyone to understand in terms of living with hydrocephalus, and this goes along with the “it’s complicated” statement that I started with. The symptoms of shunt failure are often different in every single patient, and often are different in every single episode even in the same patient. Sometimes the failures bring extreme and obvious symptoms, and you are rushed into emergency surgery. But other times, the malfunction happens slowly over time, and it takes lots of testing, patience, and perseverance to figure out that your current solution has stopped working. There are no tests that are absolutely fool-proof when it comes to diagnosing a shunt or ETV failure. Imaging (MRI or CT) often doesn’t give enough information to tell the whole story. Intercranial pressure can be tested in a number of ways, but also does not always tell the whole story. And in the end - pressure doesn’t always cause the pain. Extra fluid causes the pressure, but the pressure in your brain is ever changing throughout every minute of every day… and it is very difficult to pin down an issue. So you get some idea of how difficult this is for the doctors involved. It’s the epitome of the term “moving target”. It’s almost maddening at times. 

In my experience, diligently tracking my daily functionality, noting any changes, and having a neurosurgeon who is very familiar with how I function when I am doing well vs. when my shunt is malfunctioning, have been the most important factors in diagnosing and quickly resolving my shunt failures. I rely on all members of my team to note when they feel that there has been a change in my function. This includes my neurosurgeon, my personal trainer, and my rehabilitation therapist. Even my family, close friends and coworkers will mention to me when they feel I might be slightly “off”. It’s so important to understand and track your baseline function, so that you can identify when you are truly having an issue, vs. just having a bad headache day.  

I hope that this blog post will help you to better understand the answers to these questions, coming from someone who is living this every day. One of the main reasons I launched this website was to share with the world the real-life experiences and information that I've obtained over the years, and I hope that over time, the sharing of this information may bring hope, comfort, motivation, and closure to others who are battling hydrocephalus themselves, or supporting someone who is fighting this condition. 

Never give up the relentless pursuit of better solutions, my friends. 

Best,
Am





47 Comments
Jen
1/8/2016 12:09:21 pm

Thank you Amy! This is probably the best article I have read about hydrocephalus and the frustration in trying to find a solution to symptoms. My daughter is 12 and we are currently on the 'she is symptomatic but stable so let's just wait and watch' bandwagon, very frustrating for her and me. Thanks again!

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Amy
1/12/2016 06:33:13 am

Thank you for your kind words, and thank you for reaching out to connect.
Amy

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Peter Rutt link
6/17/2017 05:07:22 am

"Nothing" lasts "forever".

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Deb Adams
1/8/2016 05:14:43 pm

Amy,
You are simply doing the best you can with a difficult and complex situation! I love your posts, they help me understand what you are going through ! Take care and know we are praying for wisdom for you!

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Amy link
1/12/2016 06:33:51 am

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Mimi Davis Keisling
1/8/2016 08:50:50 pm

I've appreciated the opportunity to read about your journey with hydrocephalus. I was diagnosed almost four years ago when I was 48-years old. It has been a rough road, but thankfully not as rough as yours. Thank you for sharing your story. I wish you many blessings for the future.

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Amy
1/12/2016 06:35:15 am

Mimi,
Thank you for following my journey. I am always happy to connect with other adults who are battling hydrocephalus. I am happy to hear that you have had a smoother road. Thank you for your support!
Amy

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Linda Alcock
1/9/2016 02:28:43 am

Very interesting Amy thank you. I also have hydro amongst other things and am married to a firefighters. Their charity sorts out my rehab excellent facility I'm assuming you've used it.

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Amy
1/12/2016 06:36:49 am

Hi Linda! Thank you for the message! I am so glad to hear that you have good support when it comes to your rehabilitation. We have received a lot of support from so many people, including the fire department that my husband works for. We are thankful for all the support.
Amy

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Jen
1/9/2016 05:34:26 am

Thank you for sharing this amazing post my daughter just had her 18th revision in the past four years and every word you wrote matched my every thought and emotion. I will share this post with her teachers friends and family because it so eloquently put your journey and hers into words that are easy to understand thank you so much!

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Amy
1/12/2016 06:38:47 am

Jen,
I know the road is long and often frustrating;. We always try to remember to try to focus on the quality of life in between... it shifts the focus. I feel for you though -- wow. What a journey. Hang in there, and I am happy that my words brought some comfort that you are not alone!
Best,
Amy

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Ash
1/9/2016 08:55:20 am

I was born with Spina Bifida and hydrocephalus normally comes hand in hand at birth. But Im in a small % of ppl who don't develop hydro until later on. I was 13 wen I was diagnosed. I'm similar to urself my body seems to like to turn and attack my VP shunts. To date I have had 162 shunts since diagnosis bk in 2000, in fact im currently in hospital experiencing crushing headaches, sickness and worsening seizures. Major Problem is I live in the country side. I'm over an 1hr 1/2 by ambulance with lights and sirens from the city teaching hospital where my NS is. So wen im unwell I have to go to my local ED. So inevertably the drs there can "play at being neurosergeons" and will only contact my NS for advice as a VERY last resort. So looking like I might be stuck here for a while longer yet.

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Amy
1/12/2016 06:39:55 am

Ash,
I'm so sorry to hear that you are suffering. Stay strong, and thank you for following my journey.

Amy

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Catherine
1/9/2016 09:27:23 am

I am the grandmother of a young 16 yr old man that has been going thru the clogged, not draining, high pressure, now slit ventricle, let’s externalize the tube, running out of places to allow it to drain, is there infection somewhere, numerous surgeries in the past 15 yrs scenario. It is so stressful for his mom, dad, brothers, friends and teachers alike. We have been dealing with it since he was 1½ yrs old. It breaks my heart to see him so scarred from all the surgeries…from his head to his belly. He cannot live his youthful years like the other boys. He has adjusted to this illness better than I have, probably because I feel so helpless. If I could, I would trade places with him. Your journey saddens me as do the other people who posted on your blog. It is a small help to know that we are not alone in watching a loved one who suffers with this health problem…and I pray that one day they will come up with a permanent solution so no one has to suffer as our grandson has over the years. Know you are all in my prayers.

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Amy
1/12/2016 06:41:36 am

Catherine,
Thank you for reaching out to connect - Many of the reasons we decided to go public with my story was to connect with other families who are dealing with the struggles associated with this condition, and to encourage people to keep pushing. It is a difficult road, but life is well worth the struggle.
All my best,
Amy

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Holly Morello link
1/9/2016 10:13:21 am

With an inspiring spirit of optimism, you have such a clear and concise way of telling your story and educating the reader. Thank you for sharing and giving others hope. I hope we can connect again when you are in Portland. Much love and admiration, Holly Morello.

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Amy
1/12/2016 06:42:51 am

Holly,
Thanks again for ALL of your amazing support - your team has been with me since we began this public journey in 2012... and I am so thankful for all of you. I'd love to connect in Portland as soon as I can drive again.
Best,
Amy

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Sara-Lynn
2/6/2016 02:29:16 pm

Amy,
Great post I have had Hydro my whole live (35 years) I have had 8 surgeries in my lifetime due to it and just recently (last week) through yet another scare. I'm a single mom who works full time, and goes to school among other things. Your post is one of the best I've read and going to be sharing it. Thank you for what you are doing in the Hydrocephalus community.
God Bless and Free Flowing year to you,
Sara-Lynn

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Amy
2/6/2016 03:02:34 pm

Sara-Lynn, Thank you so much for the message.
You are truly a hydro warrior.... keep fighting!
Best, Amy

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Kyrie Lambdin
2/6/2016 04:21:56 pm

I was born with hydrocephalus had the shunt put in at 3 months I have had the same shunt going on 30 years this july I have only had one other surgery due to the hydro to fix my eyes when I was 3

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Amy
2/7/2016 08:36:10 am

That's awesome! thank you for sharing.

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Lon Diffenderfer
2/6/2016 05:23:04 pm

Great post, Amy! My hydrocephalus is caused by an "interpeduncular cyst." In my last surgery in 2012 (for an ETV), holes were created on opposite sides of the cyst to create a passageway for the CSF to flow through. The ETV was added as an additional passageway. Your post does an excellent job of explaining the difficulties in treating hydrocephalus - one of the greatest difficulties being that there are so many varied ways that hydrocephalus occurs. Thank you for creating this post. I have shared it on my Facebook page. :)

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Amy
2/7/2016 08:39:45 am

Lon, thank you for the message, and thank you for sharing the post. The more awareness we can spread, the better. My husband and I have been amazed by the response that we have received after starting this website. People are starved for support and real life answers. My NS says that hydro is one of the most frustrating and difficult conditions that he treats. Every little bit of awareness helps.

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Poppy
2/6/2016 07:56:13 pm

Absolutely comforting to know people who understand what I have been going through for 20 years now. Thank-you for such an interesting and insightful view!

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Amy
2/7/2016 08:41:08 am

Thank you Poppy. It makes me happy to know that you have found comfort in knowing my story.

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Matt Horton
2/6/2016 08:45:09 pm

My hydrocephalus was caused after a car accident in 1970 at the age of 2.5 months. I was thrown out of a car has it flipped.
Through the years I have had 14 Shunt revisions. 10 from 1970 to 1976 and 3 between 1980-1984.

From the years of 1985 to 2014. I have conquered many obstacles. from 1985 to 1995 I rode saddle bronc's in Rodeo all over the county from High School to Pro level. From 95-present I have climbed 40 of the highest 14er's mountains in the lower 48. In 2014 I had another shunt malfunction the 14th one but the first one in over 32 years! from 08 till now I have become one of the best over 40yr olds ATV cross country racers in the Southwest.

What does all of these statistics mean to you, me or anyone suffering with hydrocephalus? I believe it means that you can conquer anything with the right attitude. Not all Hydro stories are good ones. However with or with out a cure Hydro can be over come! Everyone's out come maybe different but you can overcome!

Thank you Amy for all that you do for all of us HYDRO Warriors! Maybe some day our path will cross until then keep up the fight love your work.

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Amy
2/7/2016 08:45:18 am

Matt, thank you so much for the message. I love that you are tackling life with great zest - good for you. Attitude is definitely a huge factor - I always say it's a good thing I'm so strong willed... It gets me through a lot. You have to be willing to put in the work. Thanks so much for reaching out to connect, and here's to the relentless pursuit of life.
Amy

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Blair Patrick Schuyler link
2/6/2016 11:07:43 pm

Amy, I have battled hydrocephalus, shunting, and various complications for over 23 years. The ETV that was performed in 2004 was a miracle that stopped the persistent, looping questioning of every headache and dizzy spell and allowed me the freedom to pursue my dreams. This is one of the most concise and comprehensive pieces about hydrocephalus that I have read. I applaud your openness, honesty, and digestible detail.

I wrote a book called, "Adolescence Interrupted" that paints the picture of all I've had to endure, and the courage needed to risk everything to cut the tethers of fear and doubt that kept me imprisoned for so long. I think you would deeply relate to the material.

I am going to share your post with everyone. Many friends and family members have complicated questions that aren't easily answered in sound bites. This is a perfectly-built synopsis of the condition, its enigmatic nature, and the constant question marks that plague the lives of those suffering for a solution. Thank you!

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Amy
2/7/2016 08:50:33 am

Blair,
Thank you for the message. I am so glad that the ETV has been a viable long term solution for you; I completely know the peace that it can bring when it works - because I had those 11 years with the ETV, no shunt and no surgery... a reprieve that allowed me to go to school, get married, and establish my life. I'm glad you found the post to be helpful, and thank you for sharing it. The more awareness and understanding that we spread, the better for everyone, including so many who are unable to have a voice or a public image. Thanks again.
Best,
Amy

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Marie yoing
2/7/2016 11:19:16 am

Thank you Amy was interesting reading your journey . My daughter is nineteen with hydrocephalus her shunt was blocked when she was eleven and delayed do the revision for a week and prior to the revision that she was a suitable candidate for a ETV but it didn't work and my daughter lost most of her eye sight because of the build of pressure . The moral of the story is that people with hydrocephalus should have regular eye tests which we did nt know . On a positive note she does really well is currently doing her a levels and hopefully will go to uni in September . Xx

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Amy
2/7/2016 06:13:28 pm

Hi Marie, thank you for the message. I am so glad that your daughter is doing well, and all the best to her as she moves forward in uni and in life! I had some pretty tough issues with my vision after shunt failures when I was younger; yes, it is something that needs more understanding. Thank you.

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Ian Borrows
6/3/2016 06:47:51 am

Thank you for sharing your journey, Amy. I fully concur that the journey is and can be very frustrating. One of the explanations I often use is about my "Quality of Life". I describe that simply that I do not have one. My hydro was not detected until I was in my early /thirties. By that time, I had served 81/2 years in the military. Symptoms appeared slowly, over time and eventually caused me to stop work, have 3 surgeries, one with a shunt placement which was occluded on the third surgery due to brain bleeds. That was 5 years ago. According to my neuro,because my hydro went undetected and untreated for so long, my right ventricle is permanently and irreparably distended. I now stay at home, unable to walk too far away and depending on how my day is going, which sometimes changes hourly, I cannot safely leave the house. I shared this with you Amy, to illustrate that I not only share your frustrations and limitations, I live and hope that even though the "trains trust" might not be able to come up with a cure for me, they can come up with one for those that are in the midst of their journey.

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Amy
6/3/2016 08:06:15 pm

Ian,
First of all, thank you kindly for your service to our country. Much love and respect.
Every day, I receive messages and emails from people all over the world who are suffering with this condition. It is both disheartening and comforting to know that we are not alone -- and I wholeheartedly agree. I do what I am doing, to raise whatever awareness I can... in hopes that the future generations will have an easier path.
All my best,
Amy

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Marlyce Thompson
6/3/2016 10:50:22 am

Amy,
Though I don't k ow you personally I grew up with you husband and his brothers. My mom worked with the boys dad and was friends with both mom and dad many years ago. I have felt compelled to follow your story as a mom with a daughter of a chronic disease and as a medical professional. Your understanding and writings about hydrocephalus is point on and it's so encouraging to see you educate and bring awareness to this very under funded disease. It's people like you that make possible the advancements in research a reality by raising awareness and putting your self out there which in turn help to bring donations and funding at the state and national level. I commend you and your fierce fight to not be a victim but a warrior for your cause! I am trying to instill those same values in my daughter with her fight in T1D. You are such a great example for her and I always share your story and updates with her she is now almost 14 diagnosed at age 4. Thank you and you are in our thoughts and prayers!🙏🏻❤️

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Amy
6/3/2016 08:13:13 pm

Marlyce,
Thank you so much for reaching out to connect with me! I will have to tell Clifton :)
My life was shaped and I was fortified by the support of amazing loving parents... and your care for your daughter warms my heart. ALL chronic illness brings similar challenge, physical and emotional trauma. I will always be here to show your daughter that life is beautiful, and is well worth the battle. I blog a lot about the mental aspect, and I get a lot of messages from moms and dads regarding that topic. Clifton and I will continue to share my story, as long as it is helping kids to know they are not alone in the trenches.
And thank you for the notes regarding the hydrocephalus information... I really try to break it down into "normal language" that everyone can understand - and we are always pushing for new paths of treatment.
All our best,
Amy

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Karen Skarda
6/4/2016 08:54:05 am

Dear Amy,
Today is the first time I have read your blog- I am a retired special Ed teacher and have loved and encouraged many young people who were going through the same battles as you. At the age of 50 I went to the ER with bradycardia and nystagmus. It was discovered I have Chiari Malformation. I have full CSF flow posterially but zero flow anterially. Decompression surgery is a possibility but 9 years later I am being followed closely but no surgery! I understand the fluidity( literally- lol) of pressure, csf flow and the myriad of symptoms it can cause.
Thank you for sharing and inspiring! You are a warrior!

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Amy
6/4/2016 12:03:12 pm

Karen,
Thank you for this message. I have incredible respect for special ed teachers, as I had a sister who went through the special ed system in school. Thank you for all you have done for these kids.... it takes a special heart. How interesting for you, to go through your own challenges after years of assisting others with theirs. I can only imagine that it is very difficult. I don't have Chiari, but I do understand it. Keep pushing for answers and the best path for you... just because surgery is the answer for many, sometimes it is not the best for others. All of these things are about quality of life, and overall health -- as you can tell, that is my message/platform.
Thank you for following my story.
Best,
Amy

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Jean
6/7/2016 06:05:41 am

Best of luck to you Amy. My granddaughter was born three months early with loculated hydrocephalus. She just turned 2 years and has had 17 surgeries. She now has two shunts and we are hoping these will last a long time. Shunts quit...Josie doesn't!

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Amy
6/7/2016 07:09:25 am

Thank you Jean! Hugs to your hydro warrior! We won't quit.

Amy

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Deb Kiser
9/6/2016 09:11:30 am

Wonderful blog Amy. Thanks for educating those that don't understand Hydrocephalus. My blockage is from a cyst, but we all share the fear of the unknown. Shunts aren't designed for long term use. I'm one of the lucky ones that haven't had a revision surgery. I have a few balance issues, but just like the pressure changes in my head, it doesn't happen every day. I'm 63 years old and currently riding a recumbent trike in the mountains of Colorado. I live in the "flatlands" of Kansas, so I'm pretty thankful for my good health.

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Amy
9/7/2016 05:47:51 am

Deb,
Thank you so much for the message! I love hearing that you are continuing to stay active- keep it up! And I'm glad you enjoyed the blog post.... I know that it is so frustrating and difficult to explain all these answers to people again and again-- this post really struck a chord with a lot of people... And I am thankful.
Best,
Amy

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Celeste link
9/7/2016 03:06:36 am

Thank you for your post.
It certainly is complicated and frustrating to say the least. I hope and pray they will find a cure in my lifetime. But, if not, I too will continue sharing my thoughts, struggles and experiences on living with Hydrocephalus.

All the best to you.

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Amy
9/7/2016 05:51:31 am

Celeste,
Thank you. I have really gained a lot of hope this year, as I have become even more involved with the work that the Hydrocephalus Association is doing-- and I have met more doctors and scientists from all around the world, who are truly passionate about finding better answers. We must continue to spread the word and share our stories with others, so they can understand the importance of improving this path... Especially for all the young people who suffer. It is my passion.
Thanks again for taking the time to contact me and follow my story!
Best,
Amy

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Mary Bird
6/11/2017 05:56:15 pm

Great article Amy, I was diagnosed at 25 & have had 9 revisions over the last 30 years . I love your outlook & positive attitude , it is so important when living w a chronic illness . I too believe in staying healthy & active in life & wish you the best ! You are an inspiration to others .

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Thara
7/4/2020 08:57:54 am

I can not think of hydrocephallus occour at any age. What was the cause for your diagnosis. Was it congenital hydrocephallus that diagnosed later?

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Renae
11/29/2017 01:47:43 pm

THE BEST TATTOO... EVA!!
SIMPLY COMPLICATED DIFFERENTIAL💥
YOU are and shall remain covered under His wings... Be that voice, as we with 'Broken Brains' FIGHT for Hope, Grace, and resolution🙏☄
You are the best gifted by chance🍃💛📍
STAY BEAUTIFUL❤

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Thara
7/4/2020 08:54:39 am

Hi Amy, I am so proud of you. You are very brave. Your words are reassuaring. What is the cause for your hydrocephallus when you were diagnosed at 17?

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    My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x31), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family. 

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