There is a written post of the journaling i did at:Tom’s Health
Watch “Start Here” on YouTube (video journal documentation of my health)
THIS IS Video Blog (vblog) documentation of my health & life starting March 2016 getting progressively worse physically but better & better mentally & spiritually.
Before I lost the use of my legs I asked others who had been thru this & worse than this,
“How did you deal with it?”
Many times hearing how they live life & keep going regardless of pain & strife helps me.
So, I am making these videos for those who are about to go thru similar situations or worse.
Glory to God,
2nd update :
Options given to me:
End of March (part 1)
End of March (part 2)
UPDATE MARCH 31, 2016:
Orthopedic DR.. BYRON DAVIDSON
wants to do surgery April 11th (a week from Monday.
Here on Clearwater they do Pre. Op.(EKG, Blood work) thru local practitioners so they set up an appointment with another Dr. this afternoon & pending Ins. appoval & Pre. Op. approval I’ll be able to have surgery APRIL 11th, Glory to God.
Planned Surgery is
“REVISION L4 & L5 HEMILAMINECTOMY DISCECTOMY”
(go in & clean up discs, untrap nerves & make room in my spine so nerves will not be irritated).
Thank you all for your love, care, prayers in action & all around support.
It is so good to have family, both blood related & those under the blood of Christ our Lord.
Bless God & God Bless you,
Tom “beetle” Bailey
APRIL (After Surgery) UPDATE:
1 week after the surgery a.k.a 1 Weak after the surgery:
Going to the Mall (Part 1)
At the Mall (Part 2)
At The Mall (Part 3)
Walking at The Mall (Part 4)
Back at parents back yard, not home yet but beautiful here for the time being
Physical Therapy starts May 6th back in St. Augustine 7a.m.
THE FOLLOWING PIC.S ARE GRAPHIC BUT I WANTED TO INCORPORATE PIC.S OF INCISION IT TOOK TO MAKE IT POSSIBLE FOR ME TO WALK AGAIN:
Here is stitches in then stitches out…
I normally do not breakout from adhesive bandages but had a little trouble this time, I also tried paper tape & 4×4 gause but had a lot of red irritation & rash trouble.
No serious trouble & i was careful to keep it dry & clean, no infections.
As of April 30th There is still swelling/inflammation but it is healing well. It itches & i can not lay flat on it but we got a “sleep number bed” and i am able to sleep in a bed without pain for the 1st time in 4 years. Praise God!
A strange thing for me i wanted to be sure & make note of is that i am experiencing some nurse pain, little electrical shocks, but they do not travel a highway of nerves. They are isolated to the area of where they did the surgery & go no further.
My right foot tingles like it is a sleep & the Dr. said he freed up a lot of nurses that were not getting circulation so that is to be expected & will eventually go away.
Nerve Pain is a funny, strange thing & i may never be the same & shouldn’t take risks of popping the L4 or L5 disc again, let alone other discs by lifting, bending or twisting.
i have definitely learned the difference between nerve pain & muscle pain through all of this and how important pain is to let our bodies know that something is wrong.
Dec. 26, 2016 update. Now I have seen a new neurologist (Dr. Karaffa) in Palm Coast (closer to home) who ordered an MRI which showed my L4 & L5 herniated again. He referred me to a Nuro Sergeant (Dr. Murphy) who is ordering a CT of my brain and MRI of my thorax (higher than where other MRIs were taken.
Dr. Murphy referred to my legs as ‘spasmatic’. He noted and understood that my legs will just not follow the instructions my brain is giving. It is not a mental health issue (psychosomatic) I’ve been given medication (shots) in the past (last Christmas eve in the ER) when my legs had uncontrollable muscle spasms that would not stop.
I was worried & Doctors considered, is this just stress? Is this just all in my head? However, the medication that would normal cause muscle spasms to stop regardless of one’s mind did not stop the spasms.
It is still so strange for me that my legs just won’t work. I can walk a few feet with a cane, or better yet a walker, however within a few seconds my legs start shaking & continue to weaken, shake and I have to crouch down before I fall.
So, here is a video saying pretty much all of that, giving my account of where/how I am now on Dec. 26, 2016: https://youtu.be/ZrxdgEwHrM4
(neurologist & neurosurgeon – palm coast)
Dr. Murphy had CT SCAN of my brain & MRI of my thorax to see if problem with my legs is coming from hirer up in my spine.
Then (on 2-20-17) Karaffa had me get MRI of my neck.
Dr. Karaffa reviewed MRI of my neck.
(Didn’t show any problems)
So he did EKG (nerve test). Showed nerve damage where I’ve already had surgery (2 times) in L4 & L5 -HEMILAMINECTOMY .
EKG showed Dr.
Nerve damage in left hip & leg.
Good news is I don’t have M.S. and the problem is not in my spine. It is not neuromuscular.
The bad news is they still don’t know the EXACT problem.
So, I’m going back to P.T. then going back to neurologist & back to neurosurgeon after P.T.
It’s a crazy cycle but as Dr. Karaffa told me, if the problem is in my spine they can do something but if it is on my legs there is nothing they can do.
AFTER ALL THE MRIs, ALL THE CT SCANS AND THE EKG THE CONCLUSION THUS FAR IS THAT IT LOOKS LIKE IT IS JUST NERVE DAMAGE. THAT’S GOOD AND BAD. Good because it is not neuromuscular, not M.S. but bad because it looks like the problem is severe nerve damage and they can’t fix, repair or replace nerves.
I’lI try my best at P.T. again but things are getting worse all the time as far as standing & walking.walking.
Update May 13, 2017 completed 8 weeks of P.T. and got diagnosed with Neuropathy (update video below)
JUNE 2017 UPDATE: https://youtu.be/dacMTlDR1AA
September 30, 2017 video update
(Seeing neuropsycholohist & missing my children):
UPDATE MARCH 15, 2018 -Waiting for s.s. disability. Trying to manage pain:
My son Alexx made the following video on January 31st 2016 which partially includes my process & progression. Alexx died the following July 2016:
UPDATE End of July 2018:
This is not the end of my story. I continue to learn how to adapt & live with my disability. I’ve been down the road or river of denial and continue to fight; however I’ve found it best to come to an acceptance that things are a certain way & I must find a way to live with the way things are, make the best of my situation & circumstances. Whatever state I am in I will be content because God is with me, He provides and meets my needs.
8/4/18 Back muscles seize up: