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

Surgery is Tomorrow Morning

 Technically this isn't an invasive surgery, it's a procedure, but they call it a surgery.  The risks and side effects are still there but all in all this is a fairly safe surgery.

I am on Day 5 of being off my tremor medication so I can't really type out a long post...well, I could but it would take hours. ;-)  There have been a few hiccups since I got to Virginia but I'll blog about all that once I can get on the computer again.

So I'll leave you with these videos of people's journey through this condition and the procedure.  I wish I could find a video of a woman patient but I can't.

And yes, they will be shaving my head.  From the webinars I've attended this seems to be a big stumbling block for women and why some shy away from this treatment.  Bald and women don't mix very well in our society.

 

I spoke too soon.  Here is a woman's story.

 

I go in early Friday morning for the procedure.  Please keep good thoughts for the outcome for me. 8-)

Sluggy

Life Lately

 I don't know if I mentioned it already(I've been kind of loopy lately)but I saw the new neurologist a week ago Monday.  Now I am fully untangled from that crappy health system. rah.

She didn't know this other neurologists name so she thinks he is a resident....a doctor with training wheels as it were.  That would partly explain him never answering my messages through the patient portal or the many phone calls logged into the Neurology Department.  He's too busy being pulled to here to there like all resident students.  And it would explain him calling me in the evening from his dorm or whatever his housing situation is.

Anyway, I now have a full fledged Neurologist who knows her shit AND can  be reached if needed.  I watched as she went through the 50 pages of my neurological medical records the other healthcare system sent over(remember, this is the same system that gave me to a Pediatrician when I went seeking a Primary Care Provider)and she was circling stuff and marking through stuff, while shaking her head and I might have seen a few eye rolls too.

Basically Mr. Resident was woefully under medicating my Essential Tremor!  New Neurologist DOUBLED one medication dosage and increased the other by a quarter.  She also told me if this wasn't enough to control them fully, she would add another medicine that is often used with my main medication, as those two sort of work in tandem to control ET.

I also let her know I was going to Virginia to possibly have FUS(Focused Ultrasound)procedure and she was all for that. 8-)))  Even if I get the FUS it will only help my dominant hand and I'll still need medications to control the other side.  After 9 months to a year patients can have the other side of their brain done if needed but I don't know where we will be a year down the road.  I can still go back to Virginia to that particular Neurosurgeon if I want.  I probably will because if we relocate to PA the closest one now to that part of Pennsylvania who does this procedure is in Philly and we won't be as close as staying with my brother in Virginia would be.

I've been to a couple of webinars on FUS and ET with Neurosurgeons and they both say there is no way to know how long the FUS procedure is effective for(your experience may vary).  I may end up back with the ET on the treated side a number of years down the road but I feel it's something I need to try.  I hate being on all these drugs and if this gets me off them or at least lessens how many I need I am all in.

I'll leave you with a nice sunset we had the other evening.  The sun sets at the back of our property.....

                                           

All the trees back there obscure the whole view but it's nice anyway.

Tomorrow maybe I'll talk about my return to the creepy eye doctor's office too.  That was a royal cluster but what can I say.....I am being held hostage in Louisiana and what passes for competence here. lolz

Sluggy

Neurological Dilemma & Frustration

So I found a doctor at U of Texas in Dallas that performs the Focused Ultrasound for people who have Essential Tremor or Parkinson's with Tremor.  I have contacted their coordinator in Texas and have requested my Neurological Medical Records to be sent to them.  But I also need a referral from my current Neurologist too before they can even set up an initial appointment.(This is a many step process to have the Focused Ultrasound procedure and at this point the initial appt. would be 3-4 weeks out from when they get the referral and the actual procedure is a YEAR out.  So needless to say, I am in a hurry to get this all going!)

My problem is with my current neurologist.  He is beyond unresponsive!  

Certain tests he ordered back on Jan. 31st were never done(3-were urine based and the lab didn't ask me for a urine specimen and 1 blood test came back that the sample they sent to the Mayo Clinic was insufficient to perform that test on my blood).  As of today, May 22nd, my neurologist has not submitted an order for these 4 tests to be done/redone.

Then I had 2 MRIs performed on March 16th.  I have had no feedback or contact from said neurologist as of today on these 2 MRI results.  I am assuming the results were ok but it would be calming to get any sort of call/text/note in the portal saying that's all ok.  Nada.

This Neurologist requested at the time of my Jan. 31st appointment that I be scheduled for a follow up appt. in 8-9 months from then.  The problem is that their scheduling system only goes 6 months out, so once I was 6 months within range from that appointment in Jan., I have messaged the department three times on three different occasions about scheduling an appointment.  As of today, no one in scheduling has responded to my requests. 

On April 5th I messaged through the patient portal that my Dermatologist at U of Mississippi needed my Neurological records as there was a possible issue we are pursuing in regards to her treatment of my HS and these records might hold some information needed.  I gave him her name, address, phone and fax # and guess what?  He never sent anything to her.  And I gave him ample time(appt. with Dermatologist was May 13th)so over a MONTH lead time and he couldn't take two minutes to respond-to send records or let me know what I needed to do to get those records to her?

Now I am waiting on a response from him in regard to the referral I need to be seen to Dallas to be a possible candidate for a Focused Ultrasound procedure.  Friday will be a week since I sent this latest request to him and I have had no response yet.  Of course, I figured I'd get push back on Focused Ultrasound from this department because NO DOCTOR IN LOUISIANA is licensed/trained to perform this procedure so it's not even on their radar as a treatment!!  But the least he could do is respond to ANY of my attempts to contact him.

So what do I do now?

I am so not happy that if I get that referral any time soon, it means I still have to live here for at least another YEAR+(I'd need to have a follow up 6 weeks after the procedure too).  If I ever get the referral and get to Dallas for appointments and testing, it may turn out I am not a candidate if my skull is too thick(as the ultrasound won't penetrate to my brain).  But I at least want the opportunity to try to go for it.

But if we don't pursue this in Dallas it means having to move/sell house/relocate somewhere there is another qualified surgeon who performs this procedure, find a neurologist(not easy to find one to take you on as a patient and may be months to find one and get an appointment)and then start the process all over again.  Leaving before we get on the schedule in Dallas would extend the time line for the procedure even longer. sigh

I am just so over the lack of communication with this neurologist and his laissez-faire attitude toward the treatment of my conditions.  It seems to be a recurring theme in Lousyana.....this "we'll get to it, when we feel like it" in businesses and medical practices.

I am so frustrated and low I just want to give up sometimes.  Not get the medications refilled and sit in a chair and shake so badly that I can't feed myself, write, or do anything productive.  I just need some good wishes and thoughts and for this horrible neurologist to at least send a referral.  I hate being on these drugs he prescribed me for ET and they don't work all the time and they make me so loopy.  Let's just drug her up and she won't bother us is how I feel that they are doing.

Sluggy