Tag Archives: Syringomyelia

Another Appointment

So Tuesday morning I am going to Little Rock for my appointment with a geneticist.  I’m pretty nervous because I’m not sure what is going to happen.


(Addy is having a very relaxing Easy)

I am hoping they will refer me to the other specialists I need to be seeing. Since moving here from OKC about a year ago, I’ve only gotten a pain management doctor in the state, and that was a complete disaster. I’ll write a post about that experience sometime in the near future,  it will make me too angry if I try to do it now.

I know I need MRIs of my brain and spinal cord. Since having surgery for Chiari Malformation,  I am supposed to be scanned every 6 months and it’s been over that.

I’ve been having significant numbness in my hands and, recently,  my feet and arms. This scares me because it is one of the symptoms of Syringomyelia,  the hole in my spinal cord, getting worse.

Also, I’ve been having a lot of neck pain, sort of like someone is jabbing a knife around in there. I know I have craniocervical instability and that will most likely need to be fused. That type of surgery scares me a lot, but I know it would help a lot of the pain go away, so I will go through with it if suggested.

I’m interested to see what the process is at the geneticist office and I’m really hoping they will refer me to some good, knowledgeable doctors.

If you have been to a geneticist,  or have any of these conditions,  I would love to hear about your experiences: Chiari Malformation,  Syringomyelia,  Ehlers-Danlos Syndrome,  craniocervical instability,  spinal fusion, Tethered Cord Syndrome,  POTS,  etc.

Hope you all have a great Monday morning!

Hugs, Kat

NaBloPoMo Day 3

Here I am again, only 3 days in to this commitment and already feeling like I’m struggling.  I think it’s just because I procrastinated writing and now I’m not feeling well this evening.

Might as well use this to my advantage and bring up the topic of my invisible illnesses. Well… not all of them, but the main three. These three and all the rest are all connected. It sucks, and unfortunately I’m finding others through my blogging journey who are suffering with the same monsters.

I have Ehlers Danlos Syndrome (EDS), which is a genetic connective tissue disorder. I was not diagnosed until 2011.

I also have Chiari Malformation (CM), which is a congenital problem with the brain herniating downward and putting too much pressure from the cerebellum on the spinal cord.

In my case, this caused a fluid filled hole inside my spinal cord. I still have nerve damage and some paralysis in my fingers.

I had decompression surgery in 2009 which involved removing a piece of my skull at the base of my head, removing parts of two vertabrae, cutting the protective sac that surrounds the brain to patch in synthetic material for enlargement. This allows the brain to have enough room so it won’t damage the spinal cord any further.

Also, I have Fibromyalgia. These three illnesses have been diagnosed together in many patients with EDS.

EDS also has quite a few subtypes. Some of them are identified by genetic testing. Others… not enough research has been done to give a clear diagnosis. Sometimes the subtypes even cross.

Enough of the boring medical terminology though.

EDS makes me hurt badly in almost every joint my body has. I dislocate joints multiple times a day. When I sleep, my ribs, hips and thumbs usually dislocate and wake me up.

I get lots of bad headaches from the CM. My neck is unstable, partially from EDS but moreso after the surgery.

Fibromyalgia causes multiple symptoms and widespread skin pain for me, but the brain fog is the worst. My memory is that of an elderly person. I struggle with putting my thoughts into spoken words. It gets quite frustrating.

Now my head is hurting worse. I took medicine. It usually makes me sleep
I’ll try to do better with this tomorrow.


Trying to Find the Words

No, this post isn’t about a crossword puzzle, although the way I feel can be more confusing than one at times.

I’ve had another bad day. Not a bad bad day, but bad enough. High pain levels and wonky emotions.

I seriously wish that all the people in my life could experience,  for just enough time to really understand,  what I go through each day. I don’t wish this permanently for anyone of course, but no one realizes that simple tasks are NOT simple for me anymore.

Pain rules my life. It has been raining today, so the pain in most of my joints is even worse than usual.

I expend energy, which I barely have, on the urgent tasks and if I even manage to get through them, I am done. Sometimes for days, depending on the situation.

Then there are days when I can’t even force myself to do basic everyday things, let alone anything urgent.

Then depression from pain, lack of consistent sleep and the fact that I can no longer function normally, sets in.

It’s a vicious cycle. Stress makes my symptoms worse.

Now, I have plainly stated this to everyone in my real life, yet people continue to try to start drama and have impossibly high expectations of me.

I can’t find the magic words to say, that will make people understand. Or at least try to. Or even give a shit, some of them.

I know this isn’t a very inspiring post… at all… but if any of you are going through this, know that I’m right there with you. If you want to vent or talk about it, leave a comment.

I’m going to next post about some of the ways I cope with this issue, because this post is already getting a little long. Here is a preview of one of my coping “methods”


Can you guess what it is? =^..^=

30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness Week

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I was a small child

4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks that most people don’t even give any thought to

5. Most people assume: That there is nothing wrong with me because, unless I am using a cane or they happen to see me in my home environment,  I don’t “look” sick

6. The hardest part about mornings are: laying awake in bed for up to 3 hours on bad days, waiting for the meds to take effect so I can even move enough to sit up

7. My favorite medical TV show is: Greys Anatomy, only because I like the storyline… and before my first brain surgery,  I was in Nursing School so I have a strong desire to lose myself in the show

8. A gadget I couldn’t live without is: my cane, my ASV (breathing) machine, and my grabber

9. The hardest part about nights are: Insomnia, and being alone…

10. Each day I take 21 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried acupuncture but it was way too painful 😦

12. If I had to choose between an invisible illness or visible I would choose: one with a cure!

13. Regarding working and career: Those dreams are now dead and gone

14. People would be surprised to know: I used to be very successful

15. The hardest thing to accept about my new reality has been: there are so many things I love to do that I will never experience again

16. Something I never thought I could do with my illness that I did was: help others just by understanding what they are going through when the rest of their world is clueless

17. The commercials about my illness: do not exist

18. Something I really miss doing since I was diagnosed is: metal detecting, riding motorcycles,  hiking, camping, playing the guitar and keyboard… and a vast number of other things

19. It was really hard to have to give up: my marriage

20. A new hobby I have taken up since my diagnosis is: learning all I can about my medical conditions

21. If I could have one day of feeling normal again I would: do everything I can’t do anymore, as much as could possibly fit into 1 day

22. My illness has taught me: patience

23. Want to know a secret? One thing people say that gets under my skin is: God only gives us what we can handle

24. But I love it when people: are interested enough to research my conditions on their own

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one…

26. When someone is diagnosed I’d like to tell them: You are not alone. It feels like it a lot of the time, but those are the times when you reach out to me or someone else you know who has the same condition

27. Something that has surprised me about living with an illness is: how many different ways there are to figure out how to do simple tasks

28. The nicest thing someone did for me when I wasn’t feeling well was: helped me bathe, fed me, carried me to bed

29. I’m involved with Invisible Illness Week because: I want as many people as possible to be aware. Just because we may look just fine on the outside doesn’t mean much because on the inside we are dealing with things an average healthy person can not even begin to wrap their mind around

30. The fact that you read this makes me feel: grateful, appreciative and happy

Losing Control of Life

Today is horribly sad. It’s the last day I will ever sit on this couch… gaze out the sliding glass door… hear the whir of the dishwasher… and a million other everyday experiences I have taken for granted the past 3 years.

Isn’t it strange how I’ve never thought about any experience as possibly being the last… until now. My heart is empty and my soul is broken. There are no words to describe exactly what I’m feeling in this moment. Today is the day my life forever changes.

I am having so many emotions and thoughts go through my mind. The- what if’s, the why me, why now, how could I have changed, why didn’t I do this better or that differently, what did I do to deserve this- type of questions.

The truth is simple but not easy to understand: I will never know the answer to any of those questions.

My illnesses (at this point it doesn’t matter what they are) have taken over my life and I am so mad at them. They have taken away my hopes and my dreams, they are changing my life drastically and not in a good way.

I don’t know how to make any of this into a positive experience. There is nothing positive about having no control over what is happening to me.

I don’t want to leave this place. I don’t want to leave my soulmate, my best friend, the one who vowed to be there with me “through sickness and health”. 

I have no choice. I want to scream and beg and plead at the top of my lungs until he wraps me in his arms and tells me everything will be ok. But he won’t,  because it’s not going to be ok.

I am Scared…

So. I haven’t made a substantial post in awhile. I have not been feeling well… to the point that I can’t function. Literally.

I have been on strong pain medication for some time now and I was almost convinced that my symptoms were because of them. I went to my dr today because I can’t live like this anymore.

Here it comes again… just like before, before I was diagnosed. Tests, blood work,  referrals, try this, maybe it will help if you do this…

I’m sorry, I know this is a depressing post. There really isn’t a point to it. Maybe I just needed to vent and it came out in a post.

Maybe I’m hoping that soneone else who has Chiari Malformation and Syringomyelia might happen to read this because no one else understands what I am going through. Kat

Time to Talk about Health.

So. I have some followers now and I’ve posted on various topics. I recently started vlogging. I keep waiting for the right time to write about my health conditions, but that moment never seems to arrive. I’m just going to start on it now because I feel like if I don’t, I’m not ever going to do it.
I don’t know why this is so difficult for me, writing about  my health. Maybe because WordPress is a place I enjoy and go to get my mind off of my health problems? Probably so. But I really think it’s a necessary evil to do this because I want to find other people who have the same conditions. In this post I will talk about the worst (in my opinion) first.

I have Chiari Malformation and Syringomyelia. Technically these are two separate conditions, but one caused the other so I generally group them together.
Chiari Malformation is a condition that I have had since birth. (It’s like this for anyone. Either you are born with it or you’re not. This is not something that can just happen to someone randomly). Only, I didn’t know I had it until 2009. I was 29 when an MRI found the syrinx in my spinal cord, hence how I found out I have Chiari Malformation.

What are these two strange and hard to pronounce conditions, you are wondering. (Unless you suffer from one or both, or know someone else who does).

Chiari Malformation is a condition where the brain does not have enough room in the bottom part of the skull, so it is pushed downward through the opening that allows the spinal cord/spine to connect to the brain/cranium. (I’m trying not to use too many medical terms because you will probably be even more confused). Another reason I hate talking about this is because it’s so hard for me to describe.
Anyway, in my case, my brain was being forced down so much that it was putting pressure on my spinal cord, which caused the syrinx. A syrinx is a hole in the spinal cord that becomes filled with spinal fluid. The spinal fluid is supposed to surround the spinal cord to act as a sort of cushion to protect it. So my brain caused my spinal cord to start taking in fluid because the fluid had no where else to go since it couldn’t flow freely due to the bottom part of my brain being in the way.

There’s more to it, obviously but you get the idea. Three weeks after I found out about the Syrinx, I was having brain surgery. The surgery I had is called Posterior Fossa Decompression with Duraplasty and Laminectomy. More strange words that are confusing.

Basically, the neurosurgeon and his team opened the back of my neck all the way up to the crown of my head, took a piece of my skull away, cut part of C-1 and C-2 sections of my spine (neck), opened the Dura (protective sac that surrounds the brain), patched a piece of synthetic dura in to enlarge it, left the section of my skull out and stapled my head back together. I made this sound much simpler than it was also, but you get the idea.

I was in ICU for 3 days, in the hospital for around a week. The time after the surgery in ICU was the most horrible thing I have ever experienced. The pain was 10 times worse than the word excruciating can even come close to describing.

After I had been home recovering for about 6 weeks, I began having horrible headaches. I will give details if anyone wants them in a different post, just comment, but I ended up having Chemical Meningitis and THEN another brain surgery. That time I was stuck in the hospital for about a month.

I think that’s all I’m going to reveal for now, but please let me know if you want me to elaborate on anything. If you have or know of these conditions, please comment. Nobody understands what I have gone/am going through because I don’t know anyone else who has.

If you would like to know more of my story or have questions please feel free to ask. I don’t mind telling in detail, I just don’t want to get too specific if no one is going to read or get anything out of it.

Hope you are all well. Kat

Life Stuff… Why I haven’t posted lately

So. Maybe you’ve been wondering why I haven’t finished (or started) my Birchbox and Vox Box reviews yet, or blogged about anything else lately. Life keeps getting in the way. I don’t know if you have read my “About Me” page or not. Probably not. It really isn’t that interesting. Actually, I can’t remember if I even mentioned my health conditions in it…

Anyway. I’m disabled. Not “wheel-chair bound” or “dying next week” disabled. I have several chronic illnesses which leave me unable to work or play or even get out of bed on some days. I’m not going to go into all the details of each problem in this post. I will. But not right now. I have a LOT of pain and am on pain medication. I’m telling you this because it is relevant to why I haven’t been writing all the time like I want to.

My pain management doctor switched one of my meds last week and I have been trying to adjust to it. I’ve gone through this so many times with various meds. This one has made me sleep. A LOT. Like even more than I already have been sleeping, with trying to get used to my CPAP/ ASV machine.

So there you have it. I have been asleep. Some other stuff has happened but I feel like I should make individual posts for everything. Otherwise this post would turn into a whole book and no one will ever read it! (maybe no one will anyway…idk)

So. If you want to know more about me  or what’s happening in my world (you know, if you are bored and want to read about some random person’s life) read on! We just might have something in common. Kat

Attention: Any and All Health Issues

This is very important to me, so I will address it right now. If you are reading this and have ANY type of health issue, please follow me and message me. I have listed some of my health issues in my About Me page. I want to help others who have suffered with health issues the way I have, no matter what the issue is. I have felt so alone in my journey, and I know what it’s like to be misunderstood by everyone in my life. I want you to know, that whatever you are going through, you are NOT alone.

I am not a doctor. I am disabled. I will help you in any way that I can. I know how to find the correct resources for many health concerns and if I don’t know of one, I will do everything I can to find one for you.

I am very open-minded and truly care about YOU, I will never judge, I will always speak from my heart and with love.

Ok, all that being said… I’m not quite sure how this blogging thing is gonna go. I have so many topics I want to write about and so much time on my hands to do it in. I can see this getting confusing very fast. I will probably have a separate blog for my product reviews, Vox Box reviews, Birchbox reviews, etc. I will keep this one focused on anyone who needs someone to listen, someone to care.

So for the time being, until I see what kind of following I will get for different subjects, please bear with me. If you follow me and see a random blog about something other than health (physical and/or mental and emotional), don’t freak out and think you have made a mistake. Feel free to read if you like. Everything I write about is something I directly relate to, so maybe you will as well!