Gold, Frankincense, Myrrh, and Brain Damage

Happy Holidays! Froeliche Weihnachten! Happy Hanukkah! Happy Kwanzaa!

What is Santa/Kris Kringle/Krampus/Monito-monita, that crazy, overgrown elf/Viking who has nothing to do with a mythical baby born in a stable bringing you this winter solstice/Christmas/yule?

I already got my gift, but nothing like what the three wise men brought across the desert. At the beginning of November I saw a new neurologist who agreed to give me everything that I seemed to be missing: an upright MRI, a neuro psych test, and keep me on as a patient, as confusing as my case is. Three days after our initial meeting the doctor who administers the neuro psych tests had a cancellation so I didn’t have to wait four months. A neuro psych test is a series of tasks to evaluate my real brain functionality – not just the few words a doctor might ask you to remember a few minutes later, like “pencil,” “dog,” and “purple.” I had to take many different kinds of timed tests, including drawing, making linear connections, making word associations, and answering personality questions. That’s the short version.

I didn’t have any problem with drawing pictures from memory. I was shown simple lines and boxes and then given a blank piece of paper a half hour later and could draw them in sequence perfectly. However, when it came to things like giving a list of words that began with a certain letter in the space of 60 seconds, it was like the bottom of my brain fell out. I could only give four words for the letter “A,” and they were very simple words like “an” and “apple.” There were four letters total, and each letter was a challenge. I can only remember the letter “A” at this point.

There was another exercise where the tester gave me a list of words that included pieces of furniture, animals, and modes of transportation. Every time I repeated the list back, I always tried to give it back in order, I never tried to group everything together in like groups. It never occurred to me. However, if I had full functionality, it probably would have. I also could never remember more than a few words, even though I’m guessing the list was repeated more than 20 times.

They wanted to see how I could do with repeating numbers back, so they started with three numbers, then four, then five. As soon as I got to five, I started struggling. At six, I couldn’t repeat any numbers, not even the last two or three of the group. Again, it was like the bottom of my brain dropped out.

There were many other tests, but in the interest of space and to save some face, I’ll stop there. You get the idea.

A few weeks later when I could meet with the doctor who administered the test, she confirmed what I dreaded hearing but suspected: I have brain damage. Since I’ve never had an evaluation done before there’s nothing to compare it to, but she said she could tell that in some areas my knowledge base and functionality was “superior,” or above the level of a college-educated woman. However, the brain damage affected my memory and speed and speech and brought those areas down to true mental impairment.

A few days ago I went into the office for part II of my follow-up to look at the actual scans of my upright MRI. My MRI did not look good.

normalventricles

Above is a progressive MRI scan of a brain (not mine), moving down from top to bottom. As you move further down, you notice that the part in the middle gets larger and darker; that’s the ventricles. They are the four chambers that are the gold standard for figuring out if there’s a problem with CSF in the brain. This is what normal looks like.

Unfortunately, I don’t have any ventricles left. All of them have collapsed. My brain is pressing on the brain stem and I’m having all kinds of unusual problems, like my legs suddenly jerking if I’m standing and I look down briefly. Of course I have the problems I’ve always had, like the vertigo and the fatigue, and that pesky facial droop and ptosis (pronounced “toe-sis”). My new neurologist insisted that the disappearance of my ventricles must mean that I’m overdraining, but I knew that I must be suffering from Slit Ventricle Syndrome, and it means just the opposite – the pressure is crushing my brain.

UCLA has a pretty good explanation of Slit Ventricle Syndrome. I’m 100% certain that my shunt is “nearly blocked but barely flowing.” I always, always feel like my intracranial pressure is extremely high. It’s exhausting. So for now, it looks like I have Slit Ventricle Syndrome, and I’m not sure if this would have been picked up before this point – at least not two or three years ago, even though the symptoms are the same. I don’t recall that my ventricles have looked this horrific in all of my 20+ prior MRIs.

Also troubling is trouble brewing at the back of my skull. In 2013 I had two cisternoperitoneal shunts placed when my neurosurgeon was trying to find anything, anything, that my body wouldn’t reject. After we removed those and I ended up with a ventriculoperitoneal shunt, he barely got the old one out after a lot of scraping and pulling because of the scar tissue that had built up along the tract. A surgery that should have been an hour and a half turned into five hours and I was left with a huge highway of bruising from my head to my abdomen.

Unfortunately, he thought that it wasn’t detrimental to leave scar tissue in my head, and in fact may help to plug the burr hole where he drilled for surgery so I wouldn’t have any leaks. I knew what it was like to have a CSF leak; 2014 was incredibly painful when I had a leaking shunt for that whole year. The scar tissue has been increasing in diameter and it’s now growing like a tumor. From what I can tell it’s about the size of a quarter, and it’s pressing on the area of the brain that deals with memory and speech. It’s actually a long rope but it’s got a huge bulb, and if I press on the burr hole, it yanks on the area it’s attached to right behind my ear.

In plain English: My brain is being crushed. My shunt isn’t working. I’m growing my own tumor that was started by my scar tissue.

My challenge is that I’m allergic to the shunt materials. Also, now that the scar tissue is turning into a growing tumor, can we take it out without creating a leak, and when we pull it out, will the area it’s damaging have permanent damage or will it heal?

Also, can I fucking qualify for disability now? Everything that I’m reading about Slit Ventricle Syndrome says that it’s a permanent condition – there’s no going back.

Within the next few weeks (because of the holidays messing everything up) I’ll find out when I can get in with the best neurosurgeon in the Minneapolis/St. Paul area. He came highly recommended by other hydrocephalus patients when I attended the hydrocephalus conference including the mother of Olivia, the young woman who had 123 surgeries since birth and who is now aged 20.

I am also in the process of finding an occupational therapist for an evaluation that can be included in my records for my attorney and disability case.

I’m going to share the most personal thing I possibly can and have up to this point, because some of you may doubt how much this has affected me because I have created coping mechanisms. It has taken me two full days to write this post and writing even the simplest words is sometimes a struggle. But the hardest thing for me to do to date was to send out holiday cards. At one point I had to stop writing for about a half hour because I broke down in tears. Hand writing words without the benefit of being able to go back and erase them and rewrite them like I do in the computer almost caused me a panic attack because I could no longer remember how to write even single-syllable words. For the people who did get cards, there was a lot more crossing out and scribbling than I would have liked. Maybe you noticed that I started to write an “E” where there should have been an “L” first. Sometimes I couldn’t even remember how to write my own name correctly – I would skip letters.

I don’t have all of the answers. I still – STILL – don’t know what’s causing the imbalance with the CSF in my brain. I don’t know if taking out the scar tissue/tumor is going to alleviate the memory and speed problems. I don’t know if I’m ever going to be able to tolerate an appliance in my body. I definitely don’t want to hear, “But you look fine!” or “Have you tried _____?”

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16 thoughts on “Gold, Frankincense, Myrrh, and Brain Damage

  1. Wow. I just don’t know what to say. I love you. This sucks balls. If you need anything, you know how to get a hold of me. I sure hope you can finally file for disability.

    Liked by 1 person

    • Thanks, Sherri. You have always been very helpful and supportive and I am forever grateful. I sure as hell hope that this qualifies me for disability now too. I mean, seriously, what does a person have to do – drag their limbs behind them in a wheelbarrow? I’d probably still get a phone call telling me that I can fold napkins somewhere to pay the rent.

      Liked by 1 person

  2. Holy shit Chelsea! I am so glad you had the upright MRI but this sucks big time!!
    I am so sorry as it’s so much to take in and deal with on your own. And still so many unknown’s on how to proceed. I hope you get into this top neurologist! You will, you have too!!! You’ve been through soooo much and it never seems to end. You are one strong Warrior Chick. I know your only human though and what you have to face would have broken the average person long ago. I know my body totally rejects anything foreign they have tried to put in other than the titanium plate in my forehead.
    I can’t believe you have not been able to file for disability yet! What the hell does it take in the U.S.? Thank you for sharing these very difficult results. Are you spending Christmas with your family??

    Liked by 1 person

    • Thank you, Cathy – as always, you are a great cheerleader! My parents and I are heading to my aunt’s place for a quiet Christmas, just the four of us. I am also going to annoy her cat because although I am deathly allergic to her, I love cats dearly and must pet them all of the time. Do you do anything to celebrate the holidays?

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      • Oh that sounds nice Chelsea! I’m so glad you are spending it with your family. Hopefully they will spoil you with love and you can chill. I always say all I want for Christmas is to spend time with the people I love. I am deathly allergic to cats too but try to keep my distance.

        As for me, I am spending Christmas Eve with my 2 sons who are 33 and 31, my daughter-in-law and my 16 year old daughter. Yeah, go figure…… am I crazy or what! Had my daughter when I was 42, and now I am menopausal and she is hormonal lol. Makes for an interesting combo and sometimes it’s pure hell!!! But she keeps life interesting and is a much better teenager than I was at this age!! Then on Christmas Day all the kids go to their Dad’s place.

        So I am driving up to my sister’s place, which is out of town, and spending the rest of Christmas with her and her family and we’re springing my 83 year old Dad out of the Retirement Home and bringing him up for a couple of days. My sis has a bottle of Grey Goose waiting for him so he can have a few martini’s over the next few days!! He’s so excited, it’s cute. He’s a quite a character and has come back from the brink of death sooo many times over the last 4 years but is doing really good now. I don’t see my sister much so I am really looking forward to spending time with her and my Dad of course. My mom passed away 6 years ago suddenly and we miss her like crazy. We are grateful Dad is still kicking!!! It’s going to be pretty hard to pace myself through this so will be down for the count afterwards for a few days but it will be worth it!!!

        Then when all is done I will rest up for my surgery which I am finally getting on January 4th.

        I’ll be watching for your blogs Chelsea. You have a great Christmas with your family. Sending big Canadian hugs!!!
        Cathy xx

        Liked by 1 person

      • Awww, ,I love all of your descriptions about your family! I hope you have a great time with everyone, especially you dad when he digs into the Grey Goose. Boy, those were the days – I understand the appeal! Go, Dad! And your surgery is finally, finally getting closer. I will wish some good juju for you too: may your surgeon’s hands be swift and sure and your healing be stellar. Hugs right back at ya!

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      • Cathy, I’m not sure if I can figure out any other way to send this or if you will see this in time, but I’m thinking about you and crossing my fingers that tomorrow will finally be the day of your surgery! May the surgeons’ hands be swift and sure and your recovery be peaceful. ❤

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  3. Oh, jeez, Chelsea! I knew it was bad (know it continues to be bad!), but I had no idea exactly how awful it was. I wish I could say/do something to make it better! You are an amazingly strong person. I can’t believe everything you’re having to go through, and I hope that your disability gets approved quickly and give you a tiny bit of relief.

    Liked by 1 person

    • Thank you, Lisa. Someone from Social Security thought I might get in for my hearing in May or June, but my attorney thinks it’s going to land around September or October if I’m lucky. Other states are delayed 24-36 months from their original filing date. It’s not for the faint of heart.

      Liked by 1 person

  4. Chels – liking the courage it took to do this post, but not liking all this struggling. I hope this finally gets you disability and some resources. You’ve been jerked around enough. I know this really has to be tough to see & also to talk about. At least maybe there’s some small comfort in finally having some answers.

    Liked by 1 person

  5. Please don’t take this as pity, just compassion for a friend, your story breaks my heart. I want to help you so much. Of course I’m not a doctor, damnit. It sounds like you are finding out a lot of information, perhaps it will lead to answers, and some help.
    I’m sending you all the good juju I can muster.

    Liked by 1 person

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