For video journal go:“START HERE”
This is the written version.
A Lot of people are asking about my health and i figure rather than retell it verbally several times i will put out this blog post and people can read as much or as little as they want.
My wife Rhonda typed this up for me/about….
In 2012 he was hit by a truck which caused left lateral paralysis. Through surgeries he was able to use his left arm and learned to walk again.
The L4-L5 was operated on back in 2012 is now disintegrated. According to CTmyelogram and MRI, his Neurosurgeon tells him his L5-S1 is entrapping the nerves that shoot electrical pains from his left hip down to his ankle.
Tom struggled for 6 months still doing his best with his work at The Salvation Army. On Monday December 21, 2015, even while trying to not irritate it, to no prevail, his right leg is now worn out by trying to over-compensate for his left leg and ended up in the ER. By Thursday Dec. 24th, 2015, Tom was in the ER for the second time in a week.
The ER doctor, Neurosurgeon, Primary doctor, Pain doctor, and physical therapy all agree that this surgery needs to be done ASAP even if insurance doesn’t pay for it.
🚑🚑🚑🚑🚑🚑🚑🚑🚑🚑🚑🚑🚑🚑 I appreciate my wife, Rhonda a registered nurse at work, who comes home and helps me with the same difficulties her patients deal with.
The following is documentation I wrote while going through the thick of health issues I re-encounter just 3 years after my accident.
I returned to work in January 2013 after being a C.N.A. (certified nurse aid) for 10 years, however, I could not go back to that type of work because it would involve me doing tasks that would irritate my back home the discs that the doctors repaired.
So, considering my past career options I went applied to go back to working with The Salvation Army, thinking a desk job & working with people would be better for my health. I did my best not to herniated the discs.
Between 2013 and 2015 somehow my body took a course all of its own. I noticed it was becoming more helpful more difficult to walk, stand & even sit. I tried stretching & exercising but my legs became weaker & weaker. My pain continued to increase regardless of what I did.
UPDATE: Jan. 8th, 2016
Just went to a neurosurgeon (Dr. GREENWALD) who explained that back surgery is impossible due to scar tissue from previous surgery; however, they are going to try a spinal cord stimulator implant to try to manage the pain. He told me that was my only option to relieve me from the endless pain. I seeked a second opinion.
UPDATE: Jan. 11th, 2016
Have an appointment for Feb. 23rd 2016 to get one last opinion before we even seriously consider the SCS Implant.
UPDATE: February 23, 2016. Saw Orthopedic Dr. In Clearwater. Got clarification & 2nd opinion. Given 3 options (in layman’s terms)
1.) Dr. can shave L4 & L5 to relieve pain.
2.) Take out discs that are entrapping nerves pinched & give plenty of room I hope that this doesn’t happen again in same area.
3.) SCS spinal cord stimulator implant (last resort).
I got shots from pain management March 1st to see if that would help withPain (it did not) March 16th go back to pain management for epidural (they’ll shoot pain meds. deep down directly around L4&L5 and evaluate if that helps relieve pain) same thing I’ve gone through in St. Augustine. March 31st I meet with Orthopedic Dr. again to decide what they can do (considering once again above 3 options given above.
April 4th I will loose my job as program coordinator of The Salvation Army of Saint Augustine, Fl. It looks like I will be able to keep my Ins. but will have to pay the premium by paying out of pocket, the generous ‘love offering’ taken up by The Salvation Army of Saint Augustine, FL will help me make those monthly payments. Glory to God!
UPDATE, MARCH 16, 2016:
Epidural did not relieve my pain.
UPDATE, MARCH 31, 2016:
Visit to Orthopedic Dr. In Clearwater –
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 April 11th 6:30a.m.
“REVISION L4 & L5 HEMILAMINECTOMY DISCECTOMY”
(go in & clean up discs, untrap nerves & make room in my spine so nerves will not be irritated).
UPDATE APRIL 11, 2016: I checked into surgery center at 6:30am, was taken in for surgery at 10:30am. I don’t know how long I was in recovery but Rhonda, Dad & AlexX (my son) were given permission to start taking me at 2:30pm.
Dr. Said it was a success & although I have extreme back pain I do not have the electrical pain in my left hip & going down that leg.
Dr. Also said he cleaned whole area up & He found some type of cyst, no big deal removed that.
Next check up April 26 with Dr. Who did surgery Dr. BYRON DAVIDSON CLEARWATER, FL mean time I am to use wheelchair to walk 10 min. Rest walk 10 min. More -do that 3 times a day. After April 26 do P.T. in St. Augustine end of April/ beginning of May -I’m going home (st. Augustine) Glory to God, Bless His name, sucess means something entirely different now.
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
Most recent update:
MAY 6TH START P.T. in St. Augustine 7a.m. still no lifting, bending or twisting.
May 18th P.T. went as well as possible but slow. Still a lot of pain.
Seems like there something wrong with both legs.
Told to don’t push too much, listen to body so when try to stand, sit & when doing a short walk (25 feet) when legs shake because they hurt and feel weak just STOP.
I WALK VERY SLOWLY FOR 6 MIN & HURT. MY GOAL IS TO TRY TO WALK 10 MIN. REGARDLESS OF DISTANCE THEN BREAK 1 OR 2 MIN. THEN WALK ANOTHER 10. It is very very CHALLENGING but I am trying.
UPDATE: July 7th 2016 I got word that my 22 year old son Alexx died. This was a devastating blow but I was able to maintain my mental health enough so that I didn’t go into a manic episode or deep depression. I am currently seeing a counselor and journaling a lot.
UPDATE: September 2016
I promised my wife if my pain didn’t go away & I can’t keep up with what P.T. gave me because of pain & weakness of my legs I’d go back to a Dr. So, I did…
Dr. Murphy is a neurosurgeon in Palm Coast.
I was ref. by Dr. Karaffa (neurologist – 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.
Saw Dr. Murphy (neurosurgeon) today. He reviewed Dr. Karaffa’s notes & confirms it is neuropathy that is causing my problems. There is no surgery that can help.
I see Dr. Karaffa (neurologist) next Thursday and will let him know P.T. has been good for me, although painful and scary because some of the exercises irritate same nerves that were entrapped before.
I’ll see what can be done for pain & keep doing my own P.T. when official P.T. is over (1st week in may). That will keep me from becoming contracted & keep atrophy away.
I finished 8 weeks of physical therapy. They stated my improvements but also noted that I am still a fall risk and to do what I can but not to the point of teasing damaged nerves.
Dr. Karaffa (neurologist) worked hand in hand with my regular Dr. & Dr. Murphy (neurosurgeon) and after analysis of all the test (CT, MRI, NERVE TEST) They diagnosed me with Neuropathy. My nerves have been damaged to the point where no surgery will help. The best thing for me to do is light stretching & movement that will help keep pain, atrophy & contracting away.
I’ve learned & I’m still learning to not walk too much & when sitting adjust when needed to keep pain away. While trying to stand as I go past 1 minute my legs begin to shake beyond control. If I walk too much (more than 50 or 100 feet at a time, sometimes much less) or sit for more than a few minutes I not only have much more pain but I feel that irritation get worse and pain levels keeps increasing until even laying flat doesn’t take it away.
The only medication I take is Gabapentine (400 mg) 3X a day. Other than that the best pain management plan I can do is limited my walking & sitting, stretch & move legs in simple motions without irritating nerves.
My regular Dr. (Mantineo) and Dr. Karaffa (neurologist) are sending me to a blood specialist after blood test showed an increase of a protein in my body that shouldn’t be there, this may be part of my problem as well.
Mean while it is up to me to keep pain down to a dull roar. It never goes away completely but if I limit my sitting, standing & walking I am away bless to keep it from flaring up.
Dr. Karaffa ordered blood test a few weeks ago and noted and abnormal amount of protein in my blood. He sent me to Dr. Sai (Oncologist). The Oncologist ordered more test and a bone marrow biopsy. The Doctors are concerned that the abnormality may be an indication of more & may be another reason why my bones & joints hurt so much.
There is no doubt about the polynuropothy but there may be more.
So, again, I wait and go through more test.
My legs never stop hurting but I am learning to live with the pain and focus on doing what I can without getting frustrated with what I can’t do.
Seeing neuropsychologist regarding repercussions from concussion I received from initial accident in 2012. RESULTS: In short the diagnosis from neuropsychologist after weeks of doing all kinds of testing showed my memory difficulties are not necessarily from the concussion but other conditions I have were very apparent. They noted my Bipolar Disorder, Chronic pain, Cognitive disorder, attention and concentration deficit as medications I take are all resons for my trouble remembering and retaining information.
UPDATE JANUARY 2018: My neurologist (Dr. Karaffa) increased my Gabapentin from 400 to 600mg 3 months ago and that is helping with the pain. Although the pain in my legs never goes away at least I can manage it with exercises I learned in P.T. and try not to irritate or strain them. No real updates now. It is up to me to accept my condition and do my best to live with it. Unable to work I am in desperate need to receive the social security disability I paid into all the years I was able to work. “Premier Disabilities” is the company helping me fight to get that. I applied in March 2016 and was informed I may get a court date this May, however, the waiting list is unbelievable and the struggle to get disability is long and drawn out for most people.
UPDATE MARCH 14, 2018: Premiere Disability Services is handeling my case. My hearing case manager (Kristina Sundguist 612-326-9229 ext. 6010) called me yesterday and I am currently trying to call her back. I left two messages and sent her the following email:
UPDATE MARCH 21, 2019
Quetiapine 100 mg. Same (for my mental health)
Levothyroxine 50MCG (same for thyroid)
GABAPENTIN 900MG 3X A DAY (increased for nerve pain)
Melatonin 20 mg (same for sleep)
Atorvastatin 80 mg (same cholesterol)
Flexeril 5mg 2x a time (increased for muscle spasms)
Allergy to: Tetracycline
Fairly recent increased Flexeril to 5mg 2x a time ( for muscle spasms)
GABAPENTIN 900MG 3X A DAY (for nerve pain).
Back muscle seizing up really takes my breath away, making it hard to do anything but lay on the floor until they let up, take the Flexeril & ibuprofen.
I know I must learn to live with the nerve damage but what is troubling me a lot lately is how it is effecting the rest of my body not just my hips & legs.
In the following vid. I’ll share some of my art & how that is helping me manage my pain.
I’ve become a pro with my wheelchairing and even wrote a few jokes making light of it.
If your lap becomes an instant cup holder…you might be in a wheelchair.
If your shopping with your family & you become an instant coat rack & holder for all the stuff they don’t want to carry….
you might be in a wheelchair.
If your mobility level of traveling is at everyone elses ass level….
you might be in a wheelchair.
Although I’m still learning to live without the full use of my legs I still have my faith (Spiritual health), my mental health, sense of humor and ability to do some artistic things.
When I feel like having a pity party I journal and draw, which gives me a clear picture that I’ve got so much more to be thankful for.
I made the above video on August 6th not the 4th as stated but since this is the written doc. on my health i can include some things i didn’t say in that video. On my last visit to Dr. Karaffa (Neurologist) he said when muscle spasms flare up i just need to take an extra 10mg. Flexerill, apply heat, lay flat on floor. That is what i’ve been doing & it helps. Ussually between 30 & 60 min. I can get the spasms to finally leave me alone.
Every night i sleep best on the floor and it makes it easier for me to move in the morning. When i wake with pain i do the p.t. exercises & small stretches. I do that when i am waking up to face the day as well.
As i do P.T. here at home, when i wake and a few times a day, i get what i call ⚡⚡⚡ZAPS!!!⚡⚡⚡Like electrical lightning strikes under my skin from my toes up to the back of my head. They are quick & sharp. It’s hard to keep doing the stretches & p.t. movements because of those but i know the importance. I just have to back off when that happens.
Inside the house i use a wraparound walker but when i go out i have to use the Wheelchair fulltime. Walking any distance more than 10 feet or so is impossible, my legs buckle & give out from under me. Inside my Zero gravity/geri chair offers me the most relief.
Now I don’t go back to Dr. until Jan. 2020 unless something new comes up.
That’s all for now…
So i thought.
Shortly after writing thus update my mom called. She has to take my dad to the ER. As a time or two before, he was slurring his speech & had some confusion. Waiting to hear more on what is happening with him.
8/7/19 Today’s verse of the day from the online Bible I read from my phone:
I will be with you, when you go through (dangerous) waters. And when you go through rivers they will not carry you away. When you walk through fire it will not burn you. And the fire will not make a fire out of you.
Isaiah 43:2 EASY
I am trying to keep up with updates so there is a record.
Hand written journaling is sometimes hard for me to do because I still find the need to stay in a reclined position to keep the pain from being unbearable (sitting at a desk to write or type still caused pain).
So glad I can use my cell phone like a typewriter, a computer, to journal, search the Web and share info., progress and HOPE (Hope = Opposition & Opportunity).
———————————————–BACKGROUND Written by my wife——————————
Tom “Beetle” Bailey worked for The Salvation Army as a volunteer and employee since he was 14 years old. From mopping floors to Camp Keystone to becoming a commissioned officer in 1992. He became a Captain but left the work to be a better soldier. Officership was too hard, he had a nervous break down trying to do the work/ministry/administration required- much respect to those who are still officers.
He continued to work for The Salvation Army but then became a C.N.A. and worked in Nursing Homes.
Then the accident took place in 2012, causing partial paralysis to his left arm & leg.
After several surgeries he learned to walk again and got full range back in his left arm.
He was warned by Dr. About going back to work but took on the job of Program Coordinator back with The Salvation Army. That lasted 3 years but his back got progressively worse again until he was completely unable to sit, stand, walk or drive.
He has spinal surgery April 11th, 2016 and hopes to get back on his feet again but plans on proceedings with caution so this never happens again.
Tom’s son Alexx did a 20min. devotional thought which partially included his dad’s process & progression. Alexx did this on January 31st, 2016 before Alexx died that July.