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2023 Mayo WADA testing update

Testing was a bit painful, but glad to be back home!

Make sure you go back and read the past blog, in order to understand this one better.

The WADA test was performed at Mayo Clinc on January 3rd, and had to stay through the 4th in town at my folks for safety reasons. We did make it home in time to say goodbye to Broc as he headded back to GCSC, and we have this week with Bryce:)

This video will show you a brief showing of the

pre-testing procedures and post procedures.

Laying there post-procedure for just about 3 hours, not allowed to move anything(not even my head to lift)...was a bit difficult until

they gave me some meds for pain and sleep.

Then I will try to explain during procedure

(as Brent was not allowed in there)

to the best of my ability,

and also how my body as well as mind is feeling today.(Jan. 5th)

During procedure happenings: WARNING some of this might be TMI for some, but this is what it is......

I am wheeled back laying flat on hospital bed, into a very cold prcoedure room with lots of various techs, nurses, doctors, nureosurgeon, my nuerologist, his tech, pyschologisst and his tech and some others for observation.

They lifted me onto the examing table and began getting my body prepped for the procedure. The bed was supposed to have hot air being blown almost imagine lying on a air matrres with sides to keep you still and warm. Well, the bed was blowing cold air, and had a hole in it and they couldnt find a new one from a different examing room. So those of you that know me well, they quickly got warmed blankets, as I was freezing and body shaking. Also, causing my BP to drop which is already very low to begin with.

Then a nurse hooked fluids to my IV already on, and a BP cuff to monitor vitals. Placed my head inside a device, and strapped in my body as well, so that I don't move.

Next up was the tech who was to numb the section from about my belly button to just below my growing area.(So yes I am completely alert and exposed) I couldn't tell if he was trying to distract me or if he was uncomfortable himself. He had to take a sponge rubbing it along those areas (as he says you should be happy its Jags colors, I said well my son is a huge Vikings fan but my mom cheers for the Jags, and says oh so we both are let down LOL) He then said well you should be happy we don't have to shave you, like we do others....he said we tend to nick people. Again, distraction or was he just nervouse since young guy...who knows.

Next the Nuerosurgeon comes in asks if I am numb, and I say well not sure, guess we will find out. I hear him say to his tech, is this the only size tube we have for insertion? (into my groin)These are for larger people, can't you see, she is tiny. The response was "that's all that's in the cabinets in here". So he tried and well lets just say if i wasn't strapped in, I could have jumped off the table, so he quickly pulled out, as he couldn't insert as far as it needed to go up. Once the new one was inserted, still painful but not as bad once the numbness started to kick in, the medication used to be sent through the tube, and up through all my veins to the top of my head.

Next up XRay tech, took many pictures, sliding the table various directions I guess to get pre-pictures of the veins before testing. Also, to make sure all areas were being delivered the medicine in order to get results on my brain waves and make sure my blood/heart etc. kept pumping correctly, with the medication being used.

Next I feel a tap on my shoulder, and it was a smiling face I recognized my nuerologist. He let me know he would be over with his tech, and try to relax as much as possible. I will be right over there, observing your brain waves. Reassuring me all would be done before I even know it. As they will do each side of the brian placing them to sleep, while the psychologist does the tests (you saw a demo in video).

Psychologist steps in and he says hello and said remember first hold your arms up like holding a pizza box, counting back from 20. When one arm goes down and you stop counting, we know that side of the brain is shut off, and we examine the other.

Testing begins by Pyschologist(during this brain waves are being recorded, pictures are taken of contrast/medicine going through veins) . I can't recall all of this, all I know is what I was told afterwards. I was shown 8 objects for each side of brain, and they were not the same. I was given sentances to repeat, and words.

Once that was all completed: I will be removed from the tube (thank goodness), and wheeled back to my post-procedure room and lay therre flat for at least 2 hours as the collagen placed int the insertaion site to keep from bleeding at the site and prevent blod clots as well. BEYOND THANKFUL TO SEE MY HUBBY AGAIN, WITH A REASSURING SMILE ALL WAS GOING TO BE OK.

Nurses came in to check vitals, and I was very low, and then given some pain medicine to help with the pain now and instructed to not move at all, from where I am placed. Was given my next dose epilepsy meds right away. (I wasn't the best at doing this laying flat, and unable to lift my head. I was never off any meds and my RNS was never turned on as it would have skewed results.

Brent explained to me that Dr. Feyissa came and spoke to him along with my folks that they got some very valuable information and he was very glad they performed the test. He said he was going to bring my case again to other Mayo Clinic nueruologist team and will have full results in about a week. (So Stay Tuned) Needless to say my case is on a first name basis, and it is consulted at pretty much weekly meetings.

Basic overview of results on Mayo Clinic Portal

**please remember these are just based on the overseeing results indicated on WADA testing performed, we will know in about a week, what it means going forward.

My memory scores 2.5 and 5 out of 8 with most right handed individuals, left sided dominance (which is already frustrating I forget conversations many boys can attest to this frustration)

Speech/language as with most right handed individuals, left sided dominance (at one point I couldn't even speak(of course my 3 men made a joke, this wouldn't be so bad...have to have humor, I said oh don't you worry, I would find a way...texting/notes etc.non-stop would begin to drive them nuts LOL)

Now we are obviosiouly are not neurologist/nuerosurgeons etc., but to us this means the surgery we thought might have been able to happen and control my left side seizures, cannot since most of my uncontrolled seizures occur on the left side. If we would freeze or remove part of left side, the above would become worse on me. (think of 50 first dates, as in the boys/hubby said, might not be too long as my past memories were intact, daily memory missing they can handle, since they say that already happens, repeated conversations that I have no memory of having)

Since I am left brain dominant, if we are reading resukts on portal correctly. Since I am already having memory and at times language complications, we don't believe the surgery would make it better, but worse.

STAY TUNED as DR. Feyissa said there was good data found

Maybe there are possible other option he is going to discuss which we hadn't done before. There is always research going on. Keep those prayers coming for those that believe in the power of prayer, or keeping sending us those good vibes!

As for today: Let's just say I am able to walk slowly about every 2 hours to avoid blood clots, and do my meditation. Taking Motrin but there is pain and swelling still at tube insertion site. I guess I need to listen to my body because no pain no gain...isn't going to work this time dang it!! Need to keep positive, but I have to admit this is not easy today.

After all I got this guy is by my side daily made

by Bryce and his 3D machine last year.

Sits right on My Glitch desk

Grogu brings me smiles daily & the FORCE!

#WeFightEpilepsyAsAFamily #TeamParmer #MyGlitch #Epilepsy #MentalHealth #PhysicalHealth #Peloton #AerospaceEngineer #ERAU #BaseballCatcher #GCSC #EpilepsyAwareness #Seizures #EpilepsyWarriors #EpilepsyFighter #ChronicIllness #EpilepsyAdvocate #EpilepsyStrong #EndEpilepsy #TooManyMeds #RNSImplant #TemporalLobeSeizures #NocturnalSeizures #AbsenceSeizures #PNES #GAD65Seizures #AutoImmuneDisease #SUDEP #UncontrolledSeizures #FocalComplexSeizures #AwareSeizures #UnawareSeizures #StatusEpilepticus #EpilepsyLife #Anxiety #EpilepsySafetyAwareness #Invisilbleillness #SeizuresSuck #EpilepsyAllianceFlorida #EpilepsyFoundationOfAmerica #BrainAblaze #MayoClinic #WADATesting #2023WillBringHope #NeverGiveUp #Fibromalgyia #GroguIsMyGuy #FamilyIsEverything #MemoryMightBeBad #LosingLanguageSkills #LeftBrainDominance #Meditation #Peloton #Positivity #EnjoyLifeToTheFullest

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05 de jan. de 2023

Sending you lots of love and hopeful prayers for your forthcoming updates.💜💜💜

Marissa DeVaul Parmer
Marissa DeVaul Parmer
06 de jan. de 2023
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Much love back in the New Year! Keep up those writings as well. You inspire more people than you realize! 🥰💜❤️

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