CES | Lub hli 8 cov Cauda Equina Syndrome

ces awarenss wristbandMy 8th month with Cauda Equina Syndrome is in the books now and what a month! We moved back to our old house on Sep 6th and began the process of unpacking. I took time off from Sep 6 15 so I could help monitor the move (and maybe even help a little bit.) We’ve been taking it slowly, metering our energy and pain levels out. My wife and I enjoyed our time together immensely. We did our devotional times together and then discussed it in depth, often spending an hour or more a day on it. We found out that there is a lot of truth in the statement, “The closer a couple gets to God, the closer they get to each other.” We had a great time of reconnecting in a relaxed atmosphere. We sure needed this time!

Just prior to the end of Month 7, I reached a low point in battling CES. The long days of physical challenge, the emotional toll, and the strain on my wife as well came to a head. I didn’t know it then, but God was preparing me for what was just days away. He broke me down completely as I spent several hours one night, sobbing and crying out to Him. I was looking for answers and understanding. Nws thiaj li, I was spent physically, emotionally, mentally and spiritually. Then there was nothing. No prompting, no comfort, no answers. I fell asleep.

Blessed be your nameImmediately upon waking the following morning, I knew God had answered. His peace was on me like never before and I felt His comfort wrapping me. Not a in a physical sense, but just knowing, throughout my being, that He had heard and was showing His love for me. It changed my outlook on life, my Cauda Equina Syndrome, and much more. I even changed the title of this blog. You can read more about it here - http://wp.me/p3A64Y-7V

During the study my wife and I were doing together after moving, each of us (separately) came to a realization that we had slowly taken back our lives from God and that He was calling us back to fully committing to Him. We explored the depth of that commitment because it was clear that it was far more than we had ever considered it to be. As we each pondered it that day, the Word sank in. That evening, I told my wife that I had decided to go all in – yielding my life to God for His purposes. She had made the same decision. We rejoiced together.

In Month 8, I also came to the end of the road for legal action regarding my Cauda Equina Syndrome. I had 2 separate law firms look at the case for a possible malpractice claim. Both attorneys say that without doubt there was medical malpractice committed on me. However, under Ohio law, the “value” of a medical malpractice case is determined by how much better your outcome would have been if the malpractice made a difference. I have been very blessed by the Lord in my recovery thus far. Most who are afflicted with Cauda Equina Syndrome are left mostly or totally disabled for the rest of their lives – dealing with pain, numbness/lack of feeling, bladder and bowel problems and sexual dysfunction.

I’ve pushed hard since my surgery, spending a week in Acute Rehab at the hospital then 2 months of outpatient Physical Therapy. I’ve done my stretches and exercises faithfully. I willed myself back to work and worked through pain for several months. My recovery, by objective standards, has been remarkable. My prognosis at the time of the surgery was in the worst possible outcome category due to the malpractice and delay in diagnosing and treating the CES. God fooled them all. I still have all of the above problems, but they are quite manageable with proper treatment and sensible limitations on my activities. I’m in the top 5% of outcome possibilities. So you can see that had the malpractice not occurred, my actual outcome wouldn’t be much, if any, better than it has been. Legally, that means the malpractice didn’t matter. I will be dealing with these symptoms and restrictions for the rest of my life but because I am doing better than I should, it isn’t worth anything. You know what? I’ll take my recovery over having done poorly enough to have a good malpractice case – ANY DAY!!!

The week after my wife and I committing and yielding fully to the Lord was one of great spiritual attack upon us. Everything that could go wrong did, 10 times over it did. And then some! I’ve never seen anything like it in my 55 xyoo. We were so overwhelmed with PROBLEMS that arose with everything, from fighting with an unscrupulous business, to insurance issues with health, home, life and auto insurances, to mail going missing (it took one important letter 20 days to make it 40 miles), pharmacy orders disappearing in transit (and unable to reach anyone in the company to fix it), to car problems, and much, much more!

Thaum xub thawj, we fell back to our old ways and began to feel overwhelmed and angry. But God wasn’t going to let us go back to what we were. He showed us that it was a spiritual attack and calmed us with His comfort. You know what, He was right. None of it surprised Him, He has our lives so He can do whatever He wants with them, and the result was amazing. We put out a prayer request and many people from all over the country prayed. We were protected and the attacks ceased.

In the rest of Month 8, I’m now commuting 100 miles a day, round trip. I can make the trip in to work in just 45 minutes. However, the trip home takes about 65-75 minutes. In the old days (last month), I would have worked myself up in a tizzy with Road Rage in that time! Now, God is in control of when I get to work and when I get home. I just enjoy talking with Him and being courteous to the other drivers who are desperately frazzled. I used to pride myself on my “excellent” driving skills allowing me to move through traffic quicker than others. Now I drive to help others, even though they won’t often know it. And I get a much bigger charge out of the new way!

Charles Spurgeon (C.H. Spurgeon)
Charles Spurgeon (C.H. Spurgeon) (Photo credit: Wikipedia)

In summary, at the end of Month 8, life is good. It certainly isn’t what I would have designed or wanted from the individual aspects. But the whole of what God has made of my life and done in me with His relationship with me, is great! I love my wife more than I ever knew one could love. And the love for my Christian family has multiplied many times over. My life is now focused on how I can help others as I go through life knowing that God’s desire for me is to become, in words, thoughts, and actions, an extension of Jesus. When others interact with me, they must see Jesus and His love for them. This is what drives me now. It is what should drive all who call themselves Christians. Charles Spurgeon once said, Every Christian is either a missionary or an imposter.” Which are you?

Lub hli 8 = more normal feeling, more changing of tingly not painful into tingly painful (this means movement towards normal feeling), and better bowel & bladder activity. I was told the nerves would regenerate for a year with most of the regeneration occurring in the first 6 months. I’d had no significant changes since Month 2. Maybe I was too busy sib ntaus Cauda Equina Syndrome rather than living with it. I’m not going to say that this is a reward from God for yielding to Him because I don’t believe He operates that way. He loves us all and wants us all to trust in Jesus, first for salvation and secondly for life. All that He allows or causes in our lives are to bring us to those two goals – first to rely on Jesus’ death in our place as the only way we can have a right relationship with Him and live with Him in Heaven one day. Once we have done that, God focuses all of His resources towards us to make us into images of Jesus – we are molded to have kind and loving words like Jesus, have gracious and generous thoughts like Jesus, and not WWJD (What Would Jesus Do?) but WDJD – What Did Jesus Do? How did He act with love for others and for the Father? Not what we think He would act like regarding something today, instead acting out of His love in ALL things.

What a month! What a life! Thanks for reading, my family, my friends, and my extended family in His Spirit.

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Injustice – Kuv Cauda Equina Syndrome raws zaj dabneeg

Malpractice - 165/365 Because it is rare, some who develop Cauda Equina Syndrome are the victims of medical malpractice. Anecdotal stories abound, along with some documented ones, of CES being brought on or made worse by malpractice. Given the laws covering malpractice in varying jurisdictions and the variability of each person's CES, no one can be certain if a case exists or how it will turn out. This is my story. It has been reviewed by 2 Ohio attorneys who have experience in Cauda Equina Syndrome malpractice cases. You won't like what it says about our legislatures, legal system, and of course doctor education.

My Cauda Equina Syndrome started with my injury. Within 10 hours of the onset of my CES symptoms, I was in an Emergency Room in Westerville, Auj. Upon waking on the morning of Feb 12, 2013, I found that I not only had the severe back and sciatic pain of the night before, but now I was NUMB from the waist down! I could not void my bladder nor defecate. I could not move my feet up ces 3nor down and without feeling in my feet and ankles, I could not balance. These are all classic symptoms of Cauda Equina Syndrome. Fortunately we had a wheelchair (and some adult diapers) and just after 10 sijhawm ua ntej tavsu, I arrived at the ER in my wheelchair.

We had been told that this ER was fast and efficient, and it was close to the office of the physician who suspected Cauda Equina Syndrome and sent us to an ER (with specific directions to have an MRI done.) Immediately upon arrival at the ER, I was wheeled to an exam room and I transferred from my wheelchair to the exam table. My vitals were taken and the male nurse assigned to me came in for the initial assessment. He stood about 5' 4", hais txog 150 pounds, a pleasant. individual who began asking about my symptoms. With my mentioning Cauda Equina Syndrome, he asked if I was incontinent. I said, "No. I can't go!" He then asked me to stand up. I told him I couldn't. I knew I would fall right over, not because my legs wouldn't support me but because I had no balance. And I knew that his small frame would be overwhelmed by my 6 foot tall, 325 pound body. No way he can stop me from falling over if he doesn't prevent it to start with. I told him so, yet he insisted. The results were predictable. On standing up, I immediately began tilting (away from him, naturally) and over I went. The nurse could no longer stop it. The rolling chair in front of a fixed desk was in line with my movement. I was able to grab the back of the chair and as it rolled into the desk, it locked in and I was able to stop my fall. He asked me again if I was incontinent. I responded as I had before. That concluded the initial exam.

A short while later the nurse came back in. He told me that the ER doctor had ordered an MRI for me. The MRI machine was located at the other end of this Ohio Health Medical Campus and did not have an opening for me for almost 4 hours. I had to wait, on that exam table, in pain, until then. The nurse did check on me a couple of times, one time bringing me a couple of replacement diapers as my bladder was so full it was leaking (I still couldn't go!) Thankfully, my wife had some snacks in her purse or I would have been without food for over 10 hours that day - not good for a diabetic! No one ever asked if I was hungry, even though I was there over lunch time. Around 2:15 p.m. the nurse came and took me to the MRI machine. As we wheeled in, I could see that the machine was an older type that was very small. I did not think I would fit. They told me the test would last about 45 minutes and that I needed to lie as still as possible (easy to do when you rate your pain at a 10 and you are not medicated - NOT). I was put into the machine and I did fit, Txawm li cas los, as I tried to breathe,

The opening in a GE Signa MRI machine
The opening in a GE Signa MRI machine (Photo credit: Wikipedia)

I could not fully expand my chest to take in a breath. I could get no more than 1/2 a breath before the constriction of the machine prevented further expansion of my chest. After several partial breaths, I knew that I could not breathe this way for 45 minutes. I told them so and I was removed from the machine - it was just a little too small. As I was wheeled back to the ER, the nurse told me about the larger machines and the open MRI machines in the area. He said, "We can get you into one of those. We'll see what we can do about that." I was returned to the exam table to wait. A half an hour passed with no one checking on me. Then the ER doctor arrived. He told me who he was and that he had been overseeing my care. He then asked me twice if I was incontinent. Again I responded with, "Not incontinent, I can't go!" Then he said, "You do NOT have Cauda Equina Syndrome. Since we are an Emergency Room and your case is not emergent, we can not refer you to an outpatient MRI facility. I'm going to give you a prescription for Percocet and a referral to our group's back specialist, for a first available appointment. He can order an MRI for you." With that he was gone.

Shortly, a person came in and told my wife and I that 2 more people would be coming in, one with the discharge papers and another to wheel me out of the facility. Hais txog 3:15, the woman with the prescription and discharge papers came in. The discharge papers said I should come back to the ER if any of my symptoms got worse OR if I developed any of these symptoms:

"Increased pain, abdominal pain, fever, difficulty controlling bowel/bladder, or any further concerns."

That was on one page of the instructions.

Another page stated this:

"YOU SHOULD SEEK MEDICAL ATTENTION IMMEDIATELY, EITHER HERE OR AT THE NEAREST EMERGENCY DEPARTMENT, IF ANY OF THE FOLLOWING OCCURS:

  • Loss of bowel or bladder control (you soil of wet yourself).
  • Weakness of inability to walk or user your leg(s) or arm(s).
  • Pain not relieved by pain medication.
  • Fever (temperature over 100.5 F) or shaking chills.
  • Severe pain that settles over one particular vertebrae (bone) in your back."

I laughed when I read these! Well as much as one can laugh while in the worst pain I've ever felt. KUV already had most of these return or get immediate attention symptoms!! The woman said that these were just generic discharge instructions for herniated discs and not specific to me.

Most medical literature states that decompressive surgery must be done within 24-48 hours or the outcome is far worse. Once those 48 hours are gone, you're pretty well going to wind up disabled for the rest of your life. So says the literature. I can tell you right now that that is not always the case as I'm living proof, but that is another story.

Other medical literature says that the surgery must be done within 6-12 hours to effect the outcome. Still other studies say that time to surgery doesn't affect the outcome. Why such divergence? Cauda Equina Syndrome is rare. No one knows exactly how rare, but my research of available estimates would indicate no more than a few hundred new cases a year in the U.S.

It ultimately took 2 weeks for my surgery to be performed. The surgery at Riverside Methodist Hospital in Columbus, OH went well, I went through Acute Rehab there for a week after the surgery. I then went through 15 sessions of Physical Therapy at NovaCare in Westerville, Auj. My outcome is that I have some normal feeling again in my waist area somewhat in my thighs and in my shins. I have painful tingling in other parts of my thighs and in my feet. My calves are mostly numb unless pressed upon - then I can tell the leg muscles are cramped up, but the good part is that I can't feel the cramps. I do stretches several times a day for calves and hamstrings. I use vision for balance and the leg weakness has diminished, i.e. strength has returned, to the point where I can walk about 500 feet with a cane and about 125 feet unassisted. Bowel and bladder functioning is that they function, I just can't control them or tell when I have to go - I get surprises. I try to go on a regular schedule to avoid surprises and I can tell most of the time when my bladder is getting close to the leaking point. I get a minute or two of warning on bowel movements most of the time, but I don't generally feel them.

In other words, my delayed surgery should have left me disabled, in bed, cathing myself, and on pain killers. I work full time, am ambulatory over short distances don't need cathing, and am on mild, non-narcotic pain relievers. In short, my recovery has been great. One of the best. However, I still have a life of everyday being a physical challenge and struggle. That won't change, but that's okay (subject of another story.) I did a lot of wondering if I would have gotten back to normal, or almost normal, had I had surgery quickly, within 48 hours. Feeling that the care I received from the ER doctor was negligent, I took everything to a Columbus, OH attorney. He called on another attorney in Cleveland, OH for a second opinion.

They both agreed that malpractice was committed, that the ER doctor "dropped the ball" as one of the attorneys put it. However, due to the standards for malpractice claims in Ohio, both attorneys felt that proving that the doctor's negligence greatly affected my outcome (my really much better than predicted by the facts outcome) would be an insurmountable challenge in court. Since that is the portion that really drives the dollar amount of any settlement, and thus the attorney's fees, my remarkable, blessed recovery makes pursuing the malpractice and negligence of the ER doctor not feasible. If I had not pushed to recover, I could have gotten a nice settlement... I'll take my recovery anytime!

So the summary is that the laws in Ohio say that what I've been through, and will go through the rest of my life, amounts to nothing. Our legal system is such that only lucrative cases are pursued. And our medical system does not educate doctors, nurses, and first responders adequately nor does it keep them updated. Had the ER doctor realized that bladder retention and not only incontinence is an indicator, we would have been golden. The info regarding retention is widely available on the internet and in medical journals.

To discount the correct diagnosis on the basis of 1 symptom is not what I want in a doctor. I feel that justice has lost in this one. However, I am at peace with this as I relate in this post - My Blog Title Changed but Still About Cauda Equina Syndrome and Me.

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Blog npe hloov lawm tab sis tseem txog Cauda Equina Syndrome & Kuv

KUV hloov lawm cov npe uas kuv blog. Ua li cas? Tsis tawm ntawm laj los yog cia li los hloov, ntau ntau muaj tshwm sim vim hais tias kuv tus ncej tas los. Kuv mam li mus ntev tswg txog nws, tabsis tamsim no peb tau hais tias tus tswv tau hloov kuv pom cov dab tsi muaj tshwm sim rau kuv... thiab nws kuj muaj chaw khiav dejnum tswj qab nws.

Kuv txoj kev ntseeg twb pom kuv ntawm no "Sib ntaus sib tua" nrog Cauda Equina Syndrome (CES) deb deb li no, tab sis kuv twb tsis muaj lub tswv yim ua qhov twg kuv txoj kev ntseeg lus tau nqe lus hais txog. Yog, Kuv wondered cas no muaj tshwm sim, dab Vaj tswv xav paub kuv thiab li cas kuv yuav tsum tau saib tau zoo. Peb yeej paub tias tej kev phem no tshwm sim rau tib neeg zoo thiab tej yam zoo tshwm sim rau tib neeg phem. Peb yeej xav kom paub hais tias vim li cas thiab feem ntau cov lus teb tau peb yog tias peb yuav tsis paub vim li cas rau lub neej no ces peb cia li tau mus nrog nws nyob. Kuv twb hnov heev xyoo txog cov neeg uas raug mob phem heev thiab kab mob "sib ntaus" los sis "battling" cov khoom twg mus nrhiav kev pab los yog ua kom puas lossis nqa lawv lub neej. Phooj ywg thiab cov txheeb ze tau tau kov los, ib co ploj mus, kev raug mob los yog kab mob. Tam sim no nws yog kuv tig.

Cas kuv tuaj los koj twb paub lawm yog tias kuv twb tsis tau lwntus zuj zus thiab kuv yog NW nyuam qhuav tau zoo nyob rau hauv tus vaj tswv Kingdom. Vaj tswv ntau npaum li ntawd, kuv xav tab sis kuv muaj succumbed rau "Cov haiv neeg twg nas" thiab kuv tus kheej rau kuv ua hauj lwm devoted. Tsis tau rau kuv lawm, ua hauj lwm tseem ceeb heev, tab sis heev tshaj ntawd yuav tsum raug kev nyuaj. Kuv kev sib raug zoo nrog kuv tus poj niam, Kuv lub sij hawm thiab kev pab rau vaj tswv thiab txoj kev kaj siab lug tau ncaim ntawm kuv lub neej. Mus txog lub sij hawm no ib lub neej hloov, lub sij hawm sij tau thiab mus ua hauj lwm qhov twg lub kua yig kev sib tw rau kuv, Kuv twb pom kuv tus kheej li battling CES ho kom kuv txoj kev ntseeg, zeb thiab txiav txim tau tuaj kuaj. Thaum lawv tau tuaj kuaj, uas tsis yog tag nrho. Ua kom pom tseeb kuv yuav tsum tau recovering deb ntau dua li tus kws kho mob thiab cov neeg ua hauj lwm lub cev puas xav tias kuv yuav, ntxiv dua txoj kev soj ntsuam kev kho mob hais tias kuv yuav. Kuv twb yuav yeej kuv "Sib ntaus sib tua". Kuv tsis, thiab tsis, tuav tawm lub tswv yim ib qab tab sis kuv lub hom phiaj lawm los yuav tau taug kev tau tsis pab dua - ib lub hom phiaj lofty ib tug neeg uas CES.

Nws yog kuv lub cwj pwm uas yuav tsum tau hloov. Kuv pom no li sib tw ib qhov twg kuv txoj kev ntseeg yuav pom kuv mus txog thiab tawm sab nraud ntawm no kuv yuav muab rau daim credit rau vaj tswv. Kuv yuav ib tug peeb zeej hauv nws pab. Tsis muaj ib yam uas uas, Tabsi yog li.... Vajtswv xav kuv. Txhua yam ntawm kuv. Nws tau xav txhua yam uas kuv tau ntev. Kuv xav tias kuv yuav tsum muab kuv tus kheej rau nws mas ntau xyoo dhau los. Nws tau siv kuv hais ntau txoj kev uas qhov txhia chaw kuv twb tau nyob. Tab sis raws li kuv hais, Kuv twb maj mam ntog nyob noj nws blessings thiab si laim nrog nws mus rau kuv tus kheej tsis txawm xaiv nws. Kuv tus poj niam tau sim pab kuv pom, tab sis kuv tau ib yam nkaus thiab teem rau ntawm kuv lub hom phiaj - uas tau lawm lawv mus cuag thiab tam sim no, vim muaj Vajtswv tus txwj, yog li ntawm kuv qhov tseeb. Kuv tus cwj pwm yuav tsum maj mam hloov lawm thiab yog tsis txawj zoo. Vaj tswv txoj smackdown rau kuv lub cev thiab cuam tshuam kuv raug kev puas siab, thiab peb lwntus thiab. Nws thiaj li, txhua yam yog stripped tseg tab sis lub tebchaws. Kuv pom tias kuv tau coj kuv tus kheej rov qab los ntawm Vajtswv thiab nws tau hu rau kuv tau muab rau kuv tus kheej kiag li nws. Xwb no lub sij hawm, Kuv to taub nws muaj ntau yam ntxiv qhov tob hauv ntawv dua kuv puas xav tias luag tau ua ntej.


Nyob rau hauv cov Ohio derecho los nag ntawm lub rau hli ntuj 29, 2012, Peb xiam ib tug laus tshauv ntoo uas yog 85 taw nyob ntev. Ob tug txiv neej tau muab peb tus zoo yeej tsocai rau tej saum tus ntoo, li tshem tau lub hauv paus, thiab hauling nws tseg tag nrho. Lawv figured lawv yuav ua nyob rau hauv 2 hnub, 6 teev ib hnub twg . Lub hauv paus yog tawv ncauj incredibly. Thaum uas lawv pib muab, lawv nrhiav tau tias muaj cov hauv paus hniav tuab ntws hauv tag nrho cov lus qhia rau, ntau txhais taw. Yog tuab heev rau lawv saws. Lawv txhoov thaum nws nrog co. thiab ua hauj lwm 3 hnub suav txij li thaum sawv ntxov mam tsaus nti. Nws kuj muaj lwm tus neeg tuaj pab. Thiab tseem lub hauv paus tseem tshuav. Thaum kawg lawv khiab tsev nyob ib zaug li. thiab ua raws li lawv. Pob ntoo ntawd yeej lawv heev rau hnub. Thaum kawg, lawv accomplished li cas peb yuav tsum tau tawm hauv lub me pov toj uas tsob ntoo lawm, Txawm li cas los, kuj tseem hauv paus hniav hauv qab ntawd pov toj. Thiab lawv siv tau lawm 40 teev rau hauv peb tes num. Lawv tsocai tau nyiaj tsawg tshaj $6 moos.

Ntawd yog li cas yog thaum kuv thawj zaug tau muab kuv tus kheej "nkaus" rau Vajtswv. Kuv pom zoo li cas zoo li lawv Planning thiab ua ntawd Planning. Thaum lub sij hawm, ntau thiab ntau ices tab sis kuv muaj kuv lub hom phiaj thiab npau suav heev thiab muaj tej tug tsis muaj sij hawm, tsis muaj chav, hais tiag vim kuv tus kheej kom vaj tswv li nkaus li nws xav. Nyob rau lub sij hawm, Kuv nqa rov qab li cas kuv twb muab nws. Dheev, xyoo no, Vaj tswv hloov tag nrho cov uas. Stricken muaj ib tug mob uas yuav hloov tas kuv sim neej, cia noj ntau yam uas kuv xav ua thiab ua kom tiav, Tam sim no kuv tau hom kab mob lub sij hawm rau nws. Kuv twb kawm tau tias nws xav ua txhua yam ntawm kuv, and I've made that commitment to Him. Now, whatever recovery I have is fine with me. Of course being who I am, I will still be pushing for the best results possible. As with many whom God used in the past, He has place His mark of ownership on me - my CES. It is a reminder of whose I am, whose strength I depend on, and who has complete control of my life. We are not to give God a little, or even a large, part in our lives. He wants our whole life to be a part of His. He wants to live out His life through us. That's what the Bible means when Paul wrote in the 8th Chapter of Romans that we who believe are being shaped and molded by God to be just like Jesus. Not just our character, but character drives motivation, and out of motivation comes actions. God uses the events in our lives to transform us (Romans 12), and He transforms us into people who think, act, speak, and love just like Jesus. Ua li cas? So He can reach people who don't know, or those who don't care about His love.

No wonder so many in America today don't want anything to do with Christianity or church - look at how we Christians live! That isn't God's plan. Time for me to get with the plan. And I no longer fight CES, but it is a mark of ownership on me and of my commitment to God. So it is now "Kuv lub neej nrog Cauda Equina Syndrome" and thus the new name for my blog.


 

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