Tuesday, July 10, 2007

Have you had an Epidural Shot lately?

I have had to many. I only wish that I had the knowledge 25 years ago that I have today about some of the invasive procedures that I have had performed on My lumbar discs. It is so frustrating when your primary care doctor has never heard of some of them, for example the Chymopapain injection. My back surgeon want even talk about Adhesive Arachnoditis which is probably what I have. Is it lack of knowledge or lack of interest. I don't know, but one Doctor that is considered to be one of the countries formost experts on the subject can explain it. I owe a debt of gratitude to Dr. Charles V Burton and the information he presents on his site. I know of no one more qualified than him on the human spine. If you have severe back problems like myself, I urge you to spend some time there if you really want an education. Any Doctor who thinks it doesn't exist might try telling this lady that it doesn't.

"Subject: Dr. Burton, another severe Adhesive Arachnoiditis sufferer!!
Date: Monday, July 31, 2000 6:15PM

Dear Dr. Burton, (sorry this is long!!)

My name is [xxxxxx] and I am a Registered Nurse. I have been a
nurse for 27 years. I was diagnosed with severe arachnoiditis in 1996. I am a very clear cut case of chemically induced adhesive arachnoiditis, as I have never had any spinal surgery of any kind, nor any other spinal problems, except for the complaint of backpain radiating down my left hip and leg in 1990. It was then that I was subjected to a myelogram/CT using the Iohexol contrast media. They found a bulging disc in the L4/L5 area and "prominent Tarlov Cysts bilaterally". I was thus sent to a pain MD and he proceeded to inject me with Depo-Medrol epidurally x3, each 2 weeks apart. (These were done
"blind" without the use of fluoroscopy[sic]).

I was never told before the myelogram, nor the epidural steroid injections, that one risk was arachnoiditis. (no surprise here!) It is interesting to note that after each steroid injection, I had not less pain, but increased pain. On the second injection, he had to reinject me as he had trouble getting the LP done and had to change levels and reinject. After that episode, I spiked a temp of 103 degrees and had excruciating pain. I called the pain clinic and they seemed
very unconcerned and prescribed me Talwin for the pain, which helped little except make me feel like I was hallucinating. So, I only took one dose. They prescribed me Percocet a few times after that, then sent me on my way. By 1996, I was in such severe, constant pain, that I could not stand it anymore. had been having pain since 1990, but this was at the point where I cried every night.

I was still working as a RN 12 hour shifts in a CCU! I went to a
neurosurgeon, on my own, not bothering to go to my family practice MD, as I felt I must have a spinal problem. (He was not happy with me that I side stepped him and went straight to a neurosurgeon, at the time). He ordered a routine spinal x-ray and MRI without contrast. That showed mild-moderate degenerative disc disease and nothing else. (or so he said). The pain continued. He had prescribed Ultram, which did not help the pain. He then ordered a Myelogram/CT and I was then subjected to another insult to my spine. We did not know, at this point yet, that I had Arachnoiditis. They had difficulty doing the LP for the Myelogram and had to do it a level either above or below the initial stick. It caused me to literally scream in pain. (I have a high pain tolerance too). (or did!!) They did the CT and then apparently[sic], saw something, for they brought me back into the CT room and repeated it, a few levels above the initial CT. After the myelogram and CT this time, they had me get up and sit in a waiting room for 2 hours. I walked from the myelogram table to the CT table and then to the waiting room. Finally, after the second insert into the CT tube, I was sent home.

A couple of days later, the nurse called from the neurosurgeon's office and said the MD now wanted me to have a MRI with contrast. (remember, the first time, he ordered the MRI, but without contrast). A few days later he called me himself on the phone and gave me the diagnosis. He never even saw me in his office!!! He told me and I quote," I'm sorry, but you have arachnoiditis. I was really worried because, at first, I thought you had spinal tumors, but you have
arachnoiditis and there is no cure. I'm sorry but I cannot help you, Goodbye, click!!!! There went the phone, and he never even allowed me to ask what the heck arachnoiditis was!!! I was literally in shock. I had never heard of this disease, even though I am a RN, and now I know why. I researched on my computer and found all the arachnoiditis support groups and began to learn, but I had NO IDEA what I was in for, but no idea!!!!

The last 3 years have been a horror story, bouncing from one pain Dr. to another, to a second neurosurgeon, the MS pump in and out after 1 year( that is another nightmare story in itself), trial of you name it, and the story is the same...you are dumped after so long and the MD.'s refuse to treat you although they all knew I had arachnoiditis. Ther[sic] attitude was blase' to say the least, and nasty, at the worst. I finally attempted suicide in April of this year by taking 80 tablets of clonazapine.(sp?). I was at the point where I was so depressed,
isolated, in such excruciating pain, with bladder and bowel and GI
complications, financial troubles, no family help, and barely staying off the street due to not enough money on SSD and LTD.(Long term disability). I was rushed to the hospital, had a NG tube placed and the charcoal tx. and was placed in a psych unit for 25 days. I do not have any hx. of mental problems in the past and I suffered for years before I finally gave up from
frustration and pain.

The psychiatrist I saw at the hospital told me that the pain MD.s were in the dark ages and my only problem was arachnoiditis and money problems and that he would treat me for life. (unfortunately, he is not a young MD). He prescribed me the Duragesic Transdermal Patch 50mcg. and I was literally amazed at how well it worked. I wondered why no MD in the past had ever tried me on this!!!! I am still having all the finacial[sic] problems to the point where my belongings are in storage and I am staying with a friend because I cannot afford to pay bills with so little income and no prescription coverage. Since, I have LTD, I do not qualify for any Medicaid or state programs etc. and so I have only Medicare which, as you know, has no prescription coverage! I wanted to tell you my story and offer you any help you might want from those of us with this horrific disease. I want the word to get out and I want to help others, although I can barely help myself at
this point, I feel as a RN, I must get the word out about all this."

The information in quotes is the copyrighted property of Dr. Charles Burton and reprinted with his permission. http://www.burtonreport.com/InfSpine/AdhesArachE-Mail.htm

My attitude in life has always been, that no matter how much you think you know your mind should always be open to learning more, especially from a professional. I just wish that more surgeons would be open to the vast amounts of information available.


dss said...

Hi I am new, my name is Dave after I read your listings you opened my eyes I had a Chymopapain jan.84 my life has been distroyed. I did post on blogger heading: pain pain but what i am trying to do is contect you Jerry I have tryed alot of different things to lower my pain and the only thing so far is, I started taking Morphine 2000 and started RMT because my back had so much swelling it took so many trys by the RMT because it was so painful to touch but after years of not giving up the surface pain has improved and he has to go very deep. I hope you will contect my e-mail is: davejoyce1@shaw.ca I am very slow when it comes to the computer ways. I was watching CTV news 1983 when a croup of Dr's. in Toronto operated on a person who fell 6 floors and hurt his back and was treated with chymopapain and it was a 100% success, thats why I had a injection. Bye I hope I hear from you.

Anonymous said...

Hello jerry, it's deanna. I am getting this straight? She only had 2 injections and is having these many problems? I have had one of these (a couple of yrs ago), which did help a little, and I'm scheduled for another one in two days. Do you think I should ask him if this shot contains this ingredient or do they all come with it. Is that ingredient the cause of the scar tissue?
I am just asking for your opinion, if you have time to respond. I will visit the burtonreport website as well. Again, thank you for your time.