Sunday, July 28, 2024

Post Surgery & Recovery

 I survived the procedure.  Even though it was non-invasive they still consider this a surgery since it messes with your brain.

Two days out I feel like an alien is controlling my right hand and it's taken quite awhile to  go back and fix all the typos in these last three sentences so this post will be short.

It was an intense experience and not something that I'm looking forward to repeating.  Having my head shaved wasn't a big deal to me but when they injected anesthetic and began screwing those 4 pins into my skull to hold the halo frame I about freaked out!  Even with a dose of fentanyl I could hear and feel them screwing these into my skull.  Talk about creepy!

Once they put me in the hybrid MRI machine and began the process of mapping out where to zap my brain it was another 3 hours(including a follow up regular MRI afterwards).
With each "zapping" I got nauseas so they pulled me out and put Zofran into my I.V. line.  I am not prone to being nauseas but I did get very queasy with this treatment

We got to the hospital at 6:00 am and left for home at 1 pm-ish.  I was wiped out.

Yesterday was had to go to Walmart and Aldi.  I need to use my sister in-law's walker as I find my gait is off and I lean to the right when I try to walk.  Trying to write or type is difficult for now too.

One side effect that seems to be pretty rare(figures I would get that one)is that food and drink tastes different.  If you blindfolded me and fed me something, I'd have a hard time telling you with any accuracy what it was in my mouth.

The neurosurgeon was sure I'd get headaches from the procedure since my skull was NOT on the thick side but borderline on the thin side.  Never got a headache though.  But I got a nice burn on my skin where they focused all the ultrasound waves.

They zapped me four separate times after mapping out where the placement should be.  Each session I felt like Alice falling down the rabbit hole since your laying in a white tunnel so it's fairly disorienting to begin with.    This procedure heats your head up to 55 degrees Celsius and I could sure feel that too.        

                             

That's the left side of my head since the mirror makes it look like the right.  

I'm on a steroid pack and just OTC pain meds.

This Focused Ultrasound doesn't cure Essential Tremor. It's just a way to ameliorate the symptoms that is non-invasive, unlike Deep Brain Stimulation where they cut you open, implanting a pacemaker like device in your chest with electric leads up into your brain.
They don't know what causes ET nor do they have a cure.  They use anti-seizure drugs as a first defense but DBS and FUS are the only other options. It's an autosomal inherited chromosome disorder and if you have a parent with it you have a 50/50 chance of getting it.

So now, like a toddler, I have to relearn how to walk properly and learn to eat, write, etc. with my "new" hand, which so far, an alien is controlling.  It will take time to relearn and stabilize,

Here is my "Before" and "After" treatment paper.


If anyone wants more information about my experience just contact me.

Sluggy

20 comments:

  1. I am so glad you are ok!!!! Continued prayers. Cindy in the South

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    1. Thanks Cindy, I appreciate it. I can use all the help I can get.

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  2. Honey I am so very sorry you had to go through that procedure.
    I wish I could do something to help.
    You are one tough broad.
    Rest your self. Let us know how your doing when your up to it.

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  3. That was more of an ordeal than I thought. Maybe my friend of 93 would not want to go through it. I hope you get all your faculties back soon.

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  4. Oh my that would have been scary, but I'm so glad it's over for you. Well done you!

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  5. I'm glad it wasn't an invasive surgery, but sheesh that u/s sounds very unpleasant. I hope it was worth it, and from the spirals picture, it looks like the tremors are less. Hope you feel better soon.

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    1. The "afters" would have been better if I wasn't freezing to death in that room when I was drawing them. The shaved head just makes you even colder. lol

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  6. Hi Sluggy, this is Chris. I have been saying prayers for you. You are going through a lot. 🙏

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  7. Wow, that sounds pretty scary. You are very brave!!! I definitely know I would not be able to do that. When I found out that they tape your head down for cataract surgery, that's all I could think about for days. I was on my way to have it done and they canceled because the AC went out at the surgery center. Now I have to get brave all over again in mid August.

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    1. I had both cataracts done in PA at Eye Care Specialists in Kingston PA. Cataract surgery was a piece of cake compared to this and I don't like my eyes messed with(don't do eye drops even). They had a gizmo that they screwed onto your eye there to keep it open and keep you from blinking, no taping your head down. I don 't know what would freak someone out more, but I feared the eye drops. lol You'll do fine. Just put it out of your mind until the morning of. 8-)

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  8. A much more intensive procedure than I thought. Let us know how you are doing as you able to do so. Healing thoughts being sent your way. SuzinWA

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  9. Praying for you that side effects your having go away soon. Take care of yourself. Joyce of pa

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  10. Prayer's that your alien hand becomes compliant. You always have a positive attitude. You are an inspiration to us all.

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  11. So happy you updated! Like any other surgery it takes time to right the ship into a new norm. Here's hoping your new norm is SO MUCH nicer!

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  12. good to see you are up and going - huge kudos to you for gettin' er done. Best wishes for smooth recovery from here.

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  13. Jre that looked very overwhelming but you did great! That before and after is amazing! Stay strong.

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  14. I think I will quit encouraging my 93 year old friend to have this done. I doubt she could hold up to what you have been through. Now, I have started wondering about my trembling little finger. Practical Parsimony

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    1. If your friend is in AL they would have to travel to Memphis, Nashville or Emory in GA to have this done at this point. Nowhere in AL or MS does this procedure yet.
      What I would give for just a trembling pinky finger...

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  15. I also have essential tremor and have had it for 20+ years. My mom had it and a daughter has it as well. I just live with it. It has gotten worse over the years but no surgery for me. It affects both hands and at times my mouth shakes slightly. Hope your treatment is successful. Diane

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