Arachnoiditis–A Story About Pain and Prevention

I decided to post at length about the diabolical nature of Arachnoiditis. I developed Arachnoiditis February 12, 2015 from a blood patch procedure performed at St. John Medical Center in Tulsa, Oklahoma. Shortly before that I had a lumbar puncture performed at St. John Neuroscience Institute. I want people to know this supposedly rare, predominantly man-made condition exists and it is destroying many lives!

How did it happened?

In May 2014, I experienced symptoms of hemifacial spasms. I Googled and found a doc specializing in the condition at a medical facility in Tulsa. He ordered a CT with gadolinium contrast and it revealed 3 arachnoid cysts. Cysts of this nature can be present without causing symptoms or wreak havoc on a person. So I visited with a neurosurgeon, who after viewing videos of my eye movements asserted microvascular decompression surgery should be done. My sister and I felt such a diagnosis warranted a second opinion, so we got an appointment with a neurosurgeon who originally did my craniotomy five years before.

I live in a small town, so I mainly rely on doctors in the Tulsa area. The neurosurgeon did a spinal tap and it all went down hill from there. Before I left recovery I experienced horrible noises in my ear. He came into the recovery room after the tap and informed me of side effects. Seriously? Afterwards? By evening I could hardly left my head up. I developed Post Dural Puncture Headache big time. I called his office two days later, and his nurse informed me the doctor said the headaches typically go in 48 hours. Silly me, 48 hours had already passed!

I decided a week later with the headaches persisting to go to the Emergency unit at Hillcrest Hospital. Unfortunately, the emergency doctor opted to contact the neurosurgeon instead of doing a blood patch. The next day at St. John, the neurosurgeon told me such headaches typically go away within 7 to 10 days (what happened to 48 hours?). When I informed him of the tinnitus, he basically retorted if you ever heard an unusual noise once in the ear, it means you already have tinnitus. Huh? He was already scared out of his wits fearing malpractice–not a good sign! He said to call him back in 3 days (a Monday) and that he may have to do a blood patch. Why he delayed doing it I will never know.

I did not call the following Monday because the headaches were less severe. However, a week later, the headaches vamped up and I called my neurosurgeon at the St. John Neuroscience Institute. He said “its too late” to do a blood patch. I wish I had listen to him but mistrust had formed because of the tinnitus comment. Instead I called the neurosurgeon who originally suggested microvasucular decompression. The next day his nurse arranged for a radiology doctor to do a blood patch at St. John Medical Center. My very hard life would get even harder, catapulting me into the deepest recesses of a living hell on Earth.

St. John Radiology Department

The blood patch was a major debacle. The doctor recommending microvascular decompression supplied a radiology doctor to perform a blood patch at St. John Medical Center. The radiology doctor kept striking a bone in my spine. He even said and I quote, “Oops, hit the bone!”….”Oops hit it again”. God knows this is true, I know for sure he hit bone 3 times, but I believe it may had been 5! I thought I was going to black out from the pain. I even saw nurses looking at each other incredulously, but no one said anything. I should had jumped off that table at the first blow and said the heck with this! Later I found out the national standard recommendation for the injection of autogulous blood is one strike and you are OUT–that means leave the patient alone if it does not go in after the first attempt!

Before I left recovery I told the nurse “something is wrong”; that I was experiencing even worse head pain than before, and my back was hurting. I asked for the report. She asked “Why?” …WHY?… Seriously, why would any medical professional ask “why” do you want a report? Hmm…lets think.

Two days later I could barely walk. For days I stayed in bed, crying in agony. I usually do not cry from pain, but I had no choice but cry. I called the doctor who performed the lumbar puncture. He agreed to see me and I told him what happened. During the exam I could not extend one leg out fully. He informed me he saw “no need for an MRI” at that time and prescribed 4mg of oral Methypredislone- a Medrol Dosepak.

Being poor, at the mercy at the state for medical assistance, I have learned from the past to never think doctors fully esteem you as a valued member of society. Therefore, I had already scheduled an appointment for the following day with my back neurosurgeon at the Spine and Orthopedic Institute to ensure a MRI would be done. Instead of seeing him during the visit, his PAC came in and ordered an MRI (thank God) and prescribed Mobic and pain cream. Two weeks passed before my followup with the PAC, in that duration I heard nothing from no one. I returned and was told my MRI reveals “inflammation” and “little” change from an earlier test over a year ago. I asked the PAC point blank, “Is there any sign of nerve clumping or Arachnoiditis”? She said “No, I do not see any of that”. A TOTAL FABRICATION!!! My sister and I did not know she was lying at the time– we were so happy, so relieved. On to lunch we go!

But God…

Arachnoiditis MRI Image

We went to a Chinese restaurant. Out of nowhere I felt uneasy. I said to my sister, something is wrong, something is not right. I told her the PAC acted funny somehow, hesitant. I decided I would go back and get the MRI report. I looked at the sheet and there it was…”nerve root clumping at l5-S1 level” (click image from my MRI on the left to enlarge). Pain does not lie, but doctors, hospitals, nurses do to cover their lying hides.

Iatrogenic “Fracking”

Arachnoiditis usualy derives from iatrogenic causes. Epidural injections are BIG business people. If it costs you your life– what the heck, the medical institutions still get paid! Arachnoiditis is destroying people’s lives! Many do not know they have it because the medical community window dress the condition with esoteric terms: “clumping”, “inflammation of the nerves” “failed back syndrome” and so on. Epidurals for C-sections, myleograms, epidural injections for pain , lumbar punctures, multiple invasions into the spine including surgeries…all can lead to Arachnoiditis. There are groups higher at risk for it but this beast can fall upon anyone. Be informed!

My neurosurgeon said my spinal tap was normal but the value on the CSF’s RBC count was “8”–indicative of a very traumatic tap. Incredibly, the same neurosurgeon upon viewing the MRI called my condition “Arachnoiditis” listing it as “acute”. I do respect him for acknowledging it, –many doctors who know what it is refuse to do so. He implemented Dr. Antonio Aldrete’s protocol of intravenous steroids, Clonidine, Amitriptyline, and Gabapentin after he reviewed the MRI with clumped nerve roots. I believe the blood patch procedure caused it; because of direct trauma to the spine from the repeated blows by the radiologist. The doctor at the place where MRI results where withheld– the Spine & Orthopedic Institute speculated the “inflammation” arrived from the two events together: spinal tap and blood patch. A plausible, likely theory. However, the radiologist should had ceased after his first attempt failed to inject blood. The symptoms of Arachnoiditis came shortly after the blood patch procedure.

In The Ruins

So here is the deal. Most doctors do not even know what Arachnoiditis is and those who do cover for those who cause it. The health of the patient is secondary to their pay checks and the sacred image of their precious medical mills.

The pain I am experiencing exceeds my ability to describe in words. My current symptoms of Arachnoiditis involves a range of different types of pain and manifestations. I have constant burning on top my right foot, as if a hot iron is on top blistering and pulling away skin and flesh. Horrific cramping mainly in calves, numbness in one calf, and the toes of the right foot has become extremely rigid. I rarely get one hour of sleep without waking up. I have constant fatigue, and I am extremely irritable. There is a continuous pulsating sensation from the buttock down one leg, and twitching muscles causing pain because the nerves and surrounding tissue hurt. Burning sensations run down my thighs. I have been in public places, losing my ability to walk–one time for ten minutes because my toes cramped inward. I can no longer lay on my back because of searing pain (although the burning in it got better after the intravenous injections). There are cramps and jolting pains in my thighs, and a crawling sensation in the perineum–fearing Cauda Equina Syndrome. Yet my greatest fear is this– am I going to be able to walk?

The neurosurgeon who tried Dr. Aldrete’s regimen ordered an EMG at the same time he announced “retirement”. He previously ordered a different MRI without contrast five weeks after the Methylpredisolone injections. I react to contrast so my hope was to delay a MRI with Gadolinium for several months to ward off additional inflammation in my body. Reviewing the MRI, he stated he saw no clumping in it and stated there was no “radiographic” evidence of Arachnoiditis. I firmly believe the intravenous injections likely helped some of the symptoms. The MRI also showed the arrival of a synovial cyst on the L4, and my research indicates Arachnoiditis can cause cysts to form. Yet the term “Arachnoiditis” hence forth disappeared off the last visit chart after the MRI without contrast. Several weeks ago I emailed a request for the mystery EMG results; no one replied back. I would later retrieve the report by other measures showing the EMG to be normal, which I firmly know to be a load of crap. I suspect the neurosurgeon feared litigation or thought I would make demands for him to testify against his fellow colleague. Consequently, I got the big shove off from him with no concern for my prognosis or pain.

So here am I, without a doctor to help me deal with Arachnoiditis, wondering what the future holds for me. My dream and prayer since cancer was that I would work again, live again and travel the world! Medical options are limited to those facing this Goliath, and it is perhaps more important for physicians to know what not to do than what to do. And the hemifacial spasms? Well you guessed it, the spasms are still here and significantly worse. God is my stay. For those who know the following passages in the Bible, I am like the woman with the issue of blood who rather grew worse by physicians (Luke 8:43-48).

I feel a need to cry out here, be careful, please! Weigh the cost of epidural injections, spinal taps, and surgeries and ask if there is another way by which your medical issue could possibly be addressed? It is worth taking the time to investigate a better way.
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Below you will find some comprehensive info on Arachnoiditis.

National Organization For Rare Disorders
Arachnoiditis

The A Word

Related Published Articles:

Adhesive Arachnoiditis:A Continuing Challenge

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3 responses to “Arachnoiditis–A Story About Pain and Prevention

  1. Rhonda, I read your initial article on the Pain Network, as the tears streamed down my face, I too will never forget “That day”.
    I had a prior surgery 6 yrs before but was in excruciating pain again. I was very young so it was difficult for me to have doctors take me and my pain seriously, they all said I was just too/sooo young. That day I was 28 and was sent for a discography procedure prior to my already scheduled surgery. It was supposed to be easy and invasive and at first it wasn’t so bad. I wasn’t able to drive at this point so unfortunately my husband (and probably most of the office) was witness to the sudden SCREAMS I had let out! I won’t forget our faces after we had realized what I just did, that was so unlike me, even while in pain. The doctor had dismissed it as fairly normal, continued, and then sent us on our way. By the time we reached our doorway at home, I had fallen, not knowing why he just helped me inside. As the night went on I began to freak out… wait, I cant move my foot, wait… my ankle, at the time we never associated the burning and tingling from my knee down because I was already having those from my rear down to my toes. Unfortunately this just goes on and gets worse, the drop foot and burning tingling etc never went away, It lessened some over the years, but also lost all feeling below knee except the burn/tingles. I just can’t go on right at the moment but I guess back then there was really no name for this, I found your story and a few others today after looking up what he could have meant for my OLD spaghetti spine after surgery. This along with my surgery left me disabled. After many years of pain management doctors etc. My pain was finally being managed fairly well, but today I find myself so scared and know I may not be walking unassisted very soon. Back to the chairs and walkers, I pray not… but the outlook is very bleak for me and my family. I am 44 now and my physician took ALL my pain medicine… I used 75mcg fentanyl every other day and hydrocodone. I am so scared and Po’ed… I know many are in this same situation right now. I ask how can they take my livelihood away like this, they didnt even try to help me. They are so cruel to do this after I fought so hard. If you see this and want to reach out to me… please please do.

  2. I so appreciate your post. You are too young to have such dire circumstances around you. It is critical for people considering back procedures, epidural injections, discograms (I had never head of discograms)…and the medical community to hear our stories! Victims of Arachnoiditis become an inconvenience to the lucrative nature of medical practices; let alone a medical frustration. There should be measures in place to address those afflicted–instead the doctors head toward the hills for cover. More importantly, these iatrogenic mishaps could be prevented and many procedures giving rise to is should not even occur. Kim, I will get in contact with you soon.

  3. BTW, there are redundant ads appearing from North American Spine on this page–I no way endorse this organization. These are ads placed by WordPress, because this is a free blog/website. Nothing like scavengers flying around a most tragic topic!

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