Introduction, serenity now!

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Introduction, serenity now!

Postby Beka » Tue Apr 17, 2018 5:12 am

Hi, I am Beka.

I had a nice post all typed out and I lost it. If there was a green thumb for computer saviness, I would not have it. 2 hours down the drain! Oh well.
It was probably too long anyway. I was going into my story about how my battle with hemidystonia lead me on a path to discovering that I have both Charcot Marie Tooth Disease 1X (CMT) and a 18mm cavernoma residing in the frontal lobe, basal ganglia and optic nerve region.
Hemidystonia is a form of dystonia (spasms) that occurs on one side. For me, it's on my left side hand and foot.
I have had three hand surgeries so far. They were to fix the tendons back to their rightful places, they had subluxed with the sheer amount of force, or tone, that each spasms creates. Imagine earthquakes and aftershocks, but in your body. Maybe some of you know?
I had my laser ablation surgery on my brain last August. It went well. Nice recovery, two full weeks without spasms, it was like a mini vacay. They only shaved off 4mm out of 18. They were concerned about my vision being lost if they were too aggressive, but expected a better outcome for sure.
I was told it would get worse before it got better. Three months after my "vacay" were spent in almost constant painful spasm.
January was the beginning of my calm period. I had infequent enough spasms to realize that I had an actual trigger. Light. Every time I would go from a darkroom to a light room, spasm! I was getting more rest = time in the dark during this time, which I think attributed to my break. My hand therapist was impressed when my hand was calm enough to work on it in a darkened room, she said it was better than the botox injections I had been getting.

I had become more sensitive to light before hand. Bright LED's needed to be switched out for iridescent ones, having more spasms when cleaning at home. I found that bright reflections in shiny surfaces brought me into big spasms. It's still very much a problem. I was beginning to feel like every place in my house and in the outside world held a trigger for me.

I am now sporting an eye patch, rose tinted glasses with glare reistance on both sides, polarized sunglasses and a sun hat. This may seem like overkill, but it's working for me. Almost. My eye doctor is in agreement. He thinks that the location of my cavernoma on the optic nerve is affecting the left field of visin in both eyes. The eye patch helps one eye at a time. I can switch them without trouble. The sunglasses + rose tinted glasses help calm down the other eye and the hat helps cut down the brightness of overhead lighting.
My next step is to ask my doctors if getting a functional vision test is a good idea and then see what's on the horizon. It's only working on the symptoms. I think that the cavernoma is the most probable cause for my dystonia. I'm thinking that another brain surgery is in my future.

What are your thoughts? Is there anyone else out there who has been through this?

Thank you for listening,

p.s. an extra symptom I had before the brain surgery was sudden falls. I'd be walking one moment and on the ground the next. This started when I was 11, the hand spasms began when I was 26 and the foot spasms began when I was 32. I have only had a couple of falls in the recovery phase, seems like my tripping has ceased.
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Joined: Sat Jul 01, 2017 2:17 am

Re: Introduction, serenity now!

Postby Elizabeth » Wed Apr 25, 2018 4:55 am

I'm sorry, that's hard! Do you have a good eye doctor? My eyes were really messed up and several MDS told me I had to live with it. I ended up finding an amazing doctor that does vision therapy and I improved in areas I was told would never change. You can find a specialized eye MD in your area at or you might need the angioma removed if its causing too much trouble...just depends on how you can deal or not deal with the consequences of the angioma.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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Location: Los Angeles

Re: Introduction, serenity now!

Postby Beka » Thu Apr 26, 2018 2:55 am

Thank you for the reply, Elizabeth!
I wrote this a week ago and didn't see it was posted until now. I replied to your reply on my most recent post.

My doctors tell me that if I have the angioma removed there is a chance that I will lose the vision connected with that side, think left field of vision on both eyes because of the right optic nerve. If I don't lose that vision, I might be weakened on the left side of my body.
I will have to check out the nora website, what a great resource.
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Joined: Sat Jul 01, 2017 2:17 am

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