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Trauma Healing & the Truth

5/17/2016

25 Comments

 
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This morning, the spring rain is falling here in Oregon, washing the landscape and cleansing my soul. It’s been an interesting couple of months. I’ve been retreating a little bit - pulling back, processing, and preparing myself mentally for the road ahead. After several months of spilling my thoughts and sharing my journey every week, I’ve needed this time to rest and remember who I am. In this period of stillness, I’ve had a chance to reflect on where I’ve been, and where I’m going. 


One year ago, the focus of my treatment shifted, and my life changed forever. Under the guidance of my OT/PT, we began to address the current condition of my central nervous system (CNS), and the trauma that has resulted from over ten surgeries on my brain in just a few short years. Until that point, the sole focus of my medical team had been on my hydrocephalus, and my shunt. The shunt has always been the cause for the concern, the pain, and ultimately, all the brain surgeries. Unfortunately, we can’t do anything about the fact that my body needs a shunt, but hates it. At this point, I’m only averaging 3-6 months in between surgery episodes. So when my therapist told us that we would be treating my pain by working to soothe and heal my nervous system from the trauma of repeated surgery, it was a new way of thinking. In a nutshell, hydrocephalus can not be healed, but trauma can.  


Trauma comes in many different forms- physical, psychological, and emotional. Brain surgery several times a year has put my nervous system through a firestorm of trauma - from the anesthesia, medications, and the physical wounds of surgery, to the emotional roller coaster and the mental exhaustion of simply trying to get through the episodes without complete system meltdown. The nerves and muscles in my face, my inner ear, and vestibular system have all been rocked and damaged. The physical symptoms of PTSD have also become more pronounced as each surgery passes. But most importantly, my CNS gets stuck in sympathetic response (commonly referred to as “fight or flight”). As my brain reels from trauma after trauma, my system is subconsciously guarding itself from further harm, at all times. This heightened state of awareness affects my sleep, breathing, and my ability to heal. The main focus of my therapy and rehabilitation this past year has been to assist my body in getting out of sympathetic response, and into parasympathetic response (rest and digest mode). Honestly, it’s very difficult. I had no idea that my brain was so damaged, and I was unprepared for how terrifying the process of unearthing all of the suppressed trauma would be. My brain only responds to certain people and in certain environments, and only lets go when I am safe, and completely fatigued, neurologically. I’m not sure if I will ever feel comfortable with this, but I know that I have a new respect for what I’m going through every time I have a shunt malfunction or surgery. After working on rehabilitation with this focus for just a year, I’ve realized that it is going to be one of the key factors in my success, for the rest of my life.


In 2015, I had a total of four surgeries. On paper, it was the worse year we’ve had with my brain to date, medically. However, by treating my CNS to heal the trauma after each surgery, we have been able to keep on track with the strategies that have historically allowed me to combat my hydrocephalus successfully. I’ve stayed active and strong, worked full time, and maintained the stability that I have strived so hard for in the past few years. While this has been one of the hardest years of my life, it’s also been one of the healthiest, and one of the happiest years. My mental perspective has also changed as my medical reality has evolved. I’ve always been a fighter, but now I know that I have to make an active choice to be well, and that only I can put in the work necessary to make that happen. It’s a daily challenge to to reach deep inside myself, choose to let go, and trust this painful and frightening process.


My current shunt is five months old. Sometime around the beginning of March, my pain spiked, and we began the all-too-familiar process of trying to right the ship to avoid the inevitable. We’ve tried everything. 
I’ve rested, and I’ve pushed. 
I’ve medicated, and I’ve detoxed. 
We’ve adjusted, and we’ve waited. 
I’ve got pages and pages of journaling and documentation of previous shunt failures, and treatments and tricks that have helped. In the past two months, I have poured myself into those logs - seeking anything that seems like a repeated pattern, and trying everything I know to do. And, in the end, we fought a good battle, and I’m proud of where I am. I’m strong, I’m at peace, and I’m ready. But there is nothing left to do, except to replace the shunt valves and start over. 


I’m committed to finding the clearest path for my brain to travel, while it processes the trauma that I’m about to add to my system. This is about the physical aspects of recovery, but it’s also about mindset. It’s about being a fighter, but not fighting the process. It’s about trusting my team, and myself. And it’s about taking the shortest path through the shit, which is unfortunately straight through the shit. No detours. 


There is no greater gift than for someone to care for you so much, that they are willing to get down in the trenches of life with you in your darkest hour and weakest moments. You look them in the eyes, let them see your pain, and are comforted by their presence in these moments of transparency. I’ve said this before, but I am unbelievably blessed by those who hold my heart. My  family, my friends, and my community surround me, covering me in love, encouragement and prayers. I’m not alone, and together we stand in this battle. That's the truth. 


Let’s do this again. We’ll hit the reset button, and show the world that we will be ok. 


Surgery #15 - scheduled 5/25/16


#stayinthearena


Much Love, 
Am

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25 Comments
Debi
5/17/2016 02:15:15 pm

My son is 12 years old and has had 67 brain surgeries due to shunt related issues. Ben cannot speak so reading your words were encouraging and devastating all at the same time. Knowing how he freaks and the trauma he had endured was a blessing to me today. Thank you.

Reply
Amy
6/3/2016 07:37:19 pm

Debi,
Thank you for your message. My heart goes out to Ben, and I am here to show that despite the trauma, life is beautiful. And worth all of this. Hugs to you and your hydro warrrior.
Am

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Meghan Lewis
5/17/2016 02:45:54 pm

Hang in there lady! I had a totally of 8 surgeries in the last 14 mos and I am sincerely hoping I am not headed for the next round with you! Sending good thoughts your way - I am glad you have a supportive partner. That will make a HUGE difference!

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Amy
6/3/2016 07:39:36 pm

Meghan,
I really hope you are able to dodge another and get a little break! I have been on a little run too... I had my post op today, and my surgeon pointed out that this is #5 in about 15 months. So, yeah. It's exhausting! Hang in there -
Am

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Pam De Maagd link
5/17/2016 03:06:20 pm

I am so sorry! I am one of the extremely fortunate ones. My shunt is 56 years old and is my original shunt. I know the struggles I have with PTSD I can't even imagine how you must feel after that many brain surgeries. You have my sympathy and respect!

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Amy
6/3/2016 07:40:53 pm

Pam,
Thank you for reaching out to connect with me. I am encouraged that your shunt has worked well for you.
Blessings,
Amy

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Raymond
5/17/2016 09:36:23 pm

Good luck because this is a very difficult time just went through my seventh revision lots of things go through my head wondering what is next be strong and hope to hear from you saying that your surgerie was a success

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Amy
6/3/2016 07:42:38 pm

Raymond,
Thank you for the message. The reason I share, is to show people that we are not alone - we are all in this together.
I had my post-op appointment today, and got all my staples out. It went awesome, and I am feeling good. Healing really well.
All my best,
Amy

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Danielle Serpente
5/17/2016 09:44:52 pm

Hi Amy,
I greatly appreciate your blog. My younger sister has had hydro since before she was born. She had 1 shunt for 14.5 years. That first shunt malfunction was quite frightening. After that 2nd surgery she had 9 surgeries within 2 years (2 infections). She went 9 yrs without surgery but she was begining to have symptoms of it not working in 2013. Test revealed that it wasn't working properly. The following week she had surgery to replace it, and our world came to a screeching halt. What should have been an overnight stay turned into almost 3 weeks in the neuro icu, 3 weeks on the step down icu, than 3 weeks in critical care in a specialty hospital, than a little over 2 mos on a neuro rehab floor. After that, it was more of a nightmare. She began having stomach pain, weight loss, n/v. It was concluded after almost a month if suffering that she has gAstroparesis. I will stop here cause I could go on and on. Do you have any advice on how to retrain the bran. I know each person is different. With the youngest she had a brain hemmorage after the ns removed the shunt that had been in place for 9 yrs. scar tissue and blood vessels were wrapped around it and he proceeded to take it out. The bleed took place in 2 parts of her brain and she ended up having A stroke to her left side( speec center). Sorry about rambling and thanks for being an inspiration.

Reply
Amy
6/3/2016 07:50:34 pm

Danielle,
So sorry it's taken me a bit to get back to you... the past couple weeks have been crazy, with my surgery, and I'm sooo behind on messages and emails! Sitting down tonight to catch up a little.
My heart breaks for you and your sweet sister - these things are so difficult and so painful to watch a sibling go through anything like this... I know because I have a younger sister who has suffered from very difficult medical challenges her whole life. The best medicine you can give her is the gift of your love and your support, ultimately, and it sounds like she has that. Medically, as for re-training the brain, that would be the work of an occupational therapist or rehabilitation specialist. There are many unique modalities in both of those fields - I have found that as in all areas of medicine, you just have to keep trying different things until something clicks.
All my best to you and your hydro warrior.
Amy

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Chantelle
5/18/2016 08:50:07 am

Wow!! This blew my mind! This is me down to the exact word!! I've been trying for so long to explain every old & new 'symptom' to people, & even with as supportive as they are, it frustrates me that they just don't get it. I am a 26 year old woman, have had at least 26 surgeries in my life, more than half being brain surgeries due to my shunt & hydrocephalus. I am with you all the way girl! You've got this, & so do I :) ❤ you're amazing, please don't ever forget that

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Amy
6/3/2016 07:52:05 pm

Chantelle,
Thank you so much for this message. You are so sweet. Yes... we do have this. We won't give up - and I am so glad that my words brought comfort to you, and let you know that you are never alone.
Am

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Carina Blazer
5/19/2016 08:40:12 am

Wow. Thank you for writting this. You'll be in my thoughts and prayers. I hope this one is easier. My 5 year old son is on shunt #13 & we've talked about replacing it. He's somewhat verbal but cannot tell me how he feels. It's so hard. I've been working on helping him recover from the trama and cope with the anxiety for over a year but we're still very new on this path. I would be eternally grateful if you had time to share any insights or advice. We're on your team now, cheering for you in the distance! <3

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Amy
6/3/2016 07:56:51 pm

Carina,
Thank you so much for reaching out to connect with me. One of the main reasons that my husband and I chose to go public with my story, and I have opened my life up... is to provide support and comfort to parents with hydro kids who have a hard time communicating. It is my passion to advocate and be a voice for these children.
I believe that in terms of trauma healing, you just have to come at it from multiple directions. It's going to be different for everyone. But I have benefitted immensely from music therapy...
Hugs to you and your hydro warrior,
Amy

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Glenda
6/4/2016 07:58:27 am

I am so glad your recovery is going well. I pray this is the last surgery for you - hopefully forever.

I love the term you use, hydro warrior. That is exactly what my husband is. He is coming up on 1 year anniversary from his last surgery and I am amazed at him every single day. I tell everyone he thought he was Superman before and he still does. It is a wonderful thing.
It is so helpful to see the strength you all exhibit here and I wish you many years of great health, Amy, and many wonderful blessings in your life.

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Frank
6/17/2016 12:11:21 am

i have a problem that I have not had before.
i was wondering if someone else has had this.
For the first time since my VP shunt was put in many years ago, I can now feel the shunt where if exits the skull. Almost like it has expanded. I wake up and feel that I am lying on the shunt and have to turn over. I recall this from when the shunt was first fitted in 1991 .
is is possible to get an infection in such an old shunt? I thought that was far more likely to happen with new shunts.
what else could cause me to now be so aware (feel)of the shunt and has anyone had this happen?

Reply
FRANK
6/17/2016 07:07:05 am

i have a problem that I have not had before.
i was wondering if someone else has had this.
For the first time since my VP shunt was put in many years ago, I can now feel the shunt where if exits the skull. Almost like it has expanded. I wake up and feel that I am lying on the shunt and have to turn over. I recall this from when the shunt was first fitted in 1991 .
is is possible to get an infection in such an old shunt? I thought that was far more likely to happen with new shunts.
what else could cause me to now be so aware (feel)of the shunt and has anyone had this happen?

Reply
Frank
7/5/2016 01:55:32 am

How are you ? I hope you are getting better after your last surgery.

Reading your FAQ “how do you know your shunt is failing” was very interesting.
With other people picking up on the fact that your shunt was failing before you knew.

What I would like to know is, once this happens and you then see your doctor, does a brain scan always reveal and confirm that the shunt has failed?

I received a case study from the Hydrocephalus Ass(see below) in with it was proven that not all people have ventricles that react to a blocked shunt. In other words even at very high pressures their brain scans look the same as when the shunt was working.

When you have had shunt problems , have your scans always shown and proven that there is a problem?
Is it as straight forward as getting a scan and knowing something is wrong or do you have to convince your doctor there really is a problem?

I can’t thank you enough for your blog and what it means so many people.

I am still waiting for an app with a neurosurgeon . due on 18th July.
Seems so far away. 

Thanking you and kind regards
Frank Hackney



The purpose of this study was to review the clinical features of a group of patients in whom ventricular enlargement was not a manifestation of prolonged CSF shunt obstruction. Results: Twelve patients who had prolonged symptoms consistent with CSF shunt failure and stable normal ventricular size were demonstrated at the time of surgery to have obstruction of their CSF shunts. Conclusion: Ventricular enlargement is a common but not sine qua non indicator of CSF shunt failure, even after weeks or months of elevated intracranial pressure, and therefore cannot be relied upon for the diagnosis of CSF shunt failure. Although an increase in ventricular size is usually seen relatively early in the course of shunt malfunction, stable normal ventricular size in patients with symptoms and signs that are consistent with shunt failure can delay the diagnosis with potentially serious adverse consequences.

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Amy
7/5/2016 07:50:55 am

Frank,
Thank you for your message and your kind words. I am glad that sharing my story has brought answers and some comfort to people - just knowing that they are not alone.

You are correct - that sometimes even though the shunt is not working, the ventricles do not change in size. This is what doctors often refer to as "stiff vents" meaning that they stay the same size no matter the pressure. This is also why imaging alone is not a good diagnostic, if you are symptomatic. I'm not a doctor, so all I am able to say, is that the way we have navigated this is to have a neurosurgeon who truly knows my baseline symptoms, and has a clear bead on what I "look like" and how my symptoms present when the shunt is blocked or even partially blocked. I actually do have "stiff vents" so sometimes, they don't even do an MRI or CT. They usually do a flow study, and since I have a programmable valve, they do several adjustments and if my symptoms don't change, they can determine that the shunt is not working.
I hope this helps. Best of luck with your appointment! Keep me posted.

Amy

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Frank
7/11/2016 01:54:44 am

what is and hoe do they do a "flow study"??

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Amy
7/11/2016 07:11:18 am

A flow study is when they inject dye into your shunt reservoir then take X-rays as the dye moves throughout your shunt system... This can help to prove whether the shunt is flowing properly. Different doctors/hospitals call these tests different things-- but they are usually done in the nuclear medicine department. It's not too painful... Just a little pain when they inject the dye-- like a bee sting. Not bad at all. I hope that helps.

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Rebeccah
10/6/2016 09:30:28 am

Amy, Thanks so much for sharing. I just found your blog. My precious son has had a shunt since he was two months old. His second shunt lasted 9 years. In the last year however we have had 10 revisions and one infection. I am starting to lose my mind a little I think. It's a horrible thing that Hydro-warriors go through. As a mother it is simply heartbreaking and such a helpless feeling. We have been considering getting a second opinion since he was so stable for so many years. I see here in the comments though that this instability is sadly more common than we thought. I am so happy I ran on to this and will keep all of these Hydro-warriors in my prayers...including you!

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Amy
10/8/2016 08:39:24 am

Rebeccah,
Thank you for reaching out to connect, and I am so sorry to hear that your son has had such a rough road this year. It's a frustrating and exhausting battle at times, but I am determined to try to stay in the light that happens in between the crazy. Stay strong my friend! All my best to your #hydrowarrior

Amy

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Tatiana
11/2/2017 12:10:52 pm

Its amazing, your words... And the way You share everything, as soon as my daugther starts to read I Will give yours posts tô her😍

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amy
11/2/2017 12:13:36 pm

Thank you so much. I hope to hug your little one someday, and tell her how strong and beautiful she is. Keep fighting xx

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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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