Patients' Stories

Chris's Story

How My Life has changed forever

My first surgery was in the 80's. I had a herniated disk at L5 and had microsurgery done. This was done by a neurosurgeon and he was one of the only doctors in the area that did this procedure. A myelogram was done 2 days before surgery. The surgery went well and I was able to return to work in 3 months. My therapy upon leaving the hospital was to begin walking as soon as possible and walk at least 2 miles a day.

In 1990, I had a flare up and feared another herniated disk. The surgeon felt that it might be scar tissue that can build up after surgery or a nerve was acting up. An MRI was done and I didn't have any problems with my disks. My vertebrae were in good alignment. I didn?t have any scar tissue build up so surgery was not required. He recommended having Epidural injections and felt that this would benefit me. I had 2 Epidural injections a month apart from each other. My pain was gone and I continued to work. The only discomfort I had in my back was when I was sleeping. According to my PT therapist this is because while sleeping your muscles are relaxed and your vertebrae are not being supported. I had no physical limitations; except lifting. I could walk for miles, dance all night long if I had the energy to do so. I was working full-time and things were going well for me.

I had taken a new job. I was doing two jobs at the same time. One of the secretaries went out on a medical leave and I was asked to do her job as well. She did medical supplies. To make a long story short it was the last day I had to do her job. It was at the end of my shift and I was filling this computerized medical supply cabinet. I was pulling some metal shelving to my bottom left and reaching for supplies to my back right. I started to walk back to my office and felt a sharp pain go down my left leg. It also felt like a Charlie horse. The administrative staff had already left so I punched out and went home. I got home and relaxed with a cup of coffee and when I went to walk the pain got really bad. I called my PCP and she told me to take some Naprosyn and Soma; and to call her if this got worst. The pain was so bad I couldn?t believe it. My husband wanted me to go to the emergency room and I hoped that the pills would take effect. I ended up going to the emergency room and was given Valium and a stronger anti-inflammatory. I returned to work the following Monday, but had difficulty walking. I saw my doctor again and could have stayed out of work; but decided to continue if I could sit at the computer and work with a limitation of walking. I was sent for physical therapy. I went for one month. The pain seemed to get worse. I requested seeing a back specialist.

I had an MRI done which showed that I had Spondylosis at L5-S1 with a disk bulging to the right. I saw an orthopedic surgeon who suggested having Epidural injections. He didn't want to rush into surgery and told me that I would need to have a spinal fusion. I had my first injection of 80cc Medrol at L5. I didn?t get any relief.

I had my second injection at the S1 joint. This was 2 months later. No relief! I was seen by a neurosurgeon. He didn't understand why I was experiencing pain on my left side because the disk was bulging to the right. When I told him I was on workman's comp I could see the expression in his face that read, 'Not interested in dealing with WC!'. He suggested having an EMG.

I returned to the orthopedic surgeon (#1). He suggested that I have a Discogram done. This test would prove whether I needed surgery or not. This test was the most uncomfortable test you can have. The injections were done at L3-L4 and then L5. When injecting into L5 my pain had increased. This meant that I needed surgery (according to #!1)

Because the orthopedic surgeon saw that I was in pain and I wanted to get back to work he suggested having the anterior bak fusion procedure done. He and a laproscopic surgeon would do the procedure. The orthopedic surgeon told me that he had been doing this procedure for about 7 months. He told me that I would be able to return to work sooner because the recovery period was much quicker. The laproscopic surgeon asked my permission to film the operation. I agreed. I went through my pre-op testing and then WC refused for me to have surgery two days before my surgery date. My attorney told me that they had plenty of time to send me to another doctor and I should have the surgery. The two doctors were ready to do the surgery for free because several other doctors were coming to view the surgery at (according to his secretary) $650.00 a head. They did not want it canceled. 

I had the surgery. I also got the hives in the recovery room. At first the nurses didn't believe me. Then they finally ran for the doctor. I also got thrush in my mouth from the medications. I still continued to have problems after surgery. I still had trouble walking. Four months after surgery and I was still having trouble walking and pain in my left leg.

The doctor suggested more injections. I got him to have another MRI done. It didn't show anything different and that I still had the forward slipping of my vertebrae. So the injections were done again, this time into the facet joints and then into the sacral joint. Upon having this one done my pain increased again and the radiologist thought we Hit a home run!?. My pain still continued. Now the orthopedic suggested going to a chiropractor. This didn't make sense to me, especially with having hardware in my vertebrae.

I called my doctor and she referred me to see another orthopedic ( # 2 )(well- known). My left leg had atrophied and I had lost of muscle mass in my calf and 1 inch in my thigh. He thought I had polio at an early age or muscular dystrophy. He couldn't see anything in the MRI and suggested having an EMG done and seeing another orthopedic surgeon( #3 ) who had pioneered the anterior bak fusion. He felt that he would know more than he would about this type of surgery because he was old fashion and still did surgery the same way he did it 30 years ago. The EMG is another extremely uncomfortable test. This would prove if I had any muscular diseases. The doctor that performed it, due to the nerves not responding properly, felt for sure I needed surgery. I was only taking Vicodin at night, Soma occasionally, Restoril to sleep and I tried Flexeril with no relief.

After having the EMG done it was unbelievable how bad the pain got. I was crying almost every night. The spasms were in my buttocks and all down my leg. I felt like my left side of my body wanted to turn inside out. When the spasms were calm; my leg felt dead. I couldn't sleep and would get 2-4 hours of sleep. Walking, sleeping and sitting kept getting worst. I saw orthopedic surgeon #3. He is a long distance for me to drive. He looked at the MRI and when I explained the symptoms, he told me that I told him more than the MRI did. He told me that the medications I was using were of no use and started me on Neurontin. He wanted a myelogram done to see if the fusion took and that it would show more than the MRI. I also had an appointment the following day with a neurosurgeon that orthopedic (#1) had referred me to see. He looked at my MRI and thought that I had a compressed nerve and that it would involve decompression and that both he and ( #1) would have to do the surgery together because of the cages. I didn't want anything to do with the doctor that had done the surgery. He also wanted a myelogram done.

I had the myelogram done as suggested by #3. It stated that I did not have a compressed lesion, I still have spondylosis, a syrinx in the upper area, and lastly Arachnoiditis at L5-S1 left. This doctor #3 informed me that he would no longer be my doctor because he is a surgeon and that there is nothing he can do for me surgically. When he gave the explanation of Arachnoiditis, a chronically inflamed nerve that didn't sound too bad. He also suggested that I have the SCS put in and that I would be a good candidate due to the fact that the pain is mostly in my l left leg. He told me to set up an appointment with the Pain clinic.

When I received a copy of the myelogram report I started looking up information on the Internet about Arachnoiditis. It was late at night almost 9 months ago. I was devastated. I cried for almost 2 hours wondering what more changes in my life were going to occur and that I was never going to be the same again; that my life was going to be tolerance of pain and that everything would change. More pain, more medications, more physical restrictions with less ability to tolerate sometimes the littlest of movement. Even riding in a car can cause such pain. I found out the true causes of arachnoiditis and the true definition. I can't believe how much they charged for the surgery, $30,000.00! Getting these bills in the mail has added a lot more gray hair.

At my initial visit with the pain clinic the doctor told me that I have arthritis in all my facet joints in all my vertebrae. He suggested having epidural injections. I told him that I had already tried these and they didn?t work. My husband informed him that I was told I had arachnoiditis. Is this the problem or the arthritis. He stated that Arachnoiditis is most of my problem that I'm dealing with. I had my dose of Neurontin increased. I have tried the IV Lidocaine procedure with no results. I have used the TENS unit which feels like nothing more than buzzing in my spine with no relief of pain. The doctors don't seem to like to use the name of this diagnosis. But then you have to realize why. It is caused mostly from the their intervention to assist our pain. In the long run, unfortunately, they have made us worst.

I am still going to the pain clinic. They know that I don?t want any injections. They know that currently I?m not thinking of having the SCS put in either. If I wasn't taking the medications I am on; I don?t know how I could possibly deal with the pain. Some days the pain is worst than others. It's also weird how the sensations change. I?ve had days when it feels like my foot is in a bucket of ice. Or sensations in my bladder like you might feel when you are going into a freezing cold ocean. My atrophy hasn't gotten any better and fortunately not worst; though I have days when it's very hard to climb the stairs. Walking had since the beginning of my injury been a problem. It just continues to get worse. There are days when I can hardly get through a drugstore. I have spasms in my buttocks, leg and feet. I feel like the nerves are on the outside of my leg instead of the inside and my hamstring muscle feels like someone is squeezing the living daylights out of it all the time.

For the past two months I have started with having severe neck pain and burning in my neck muscles with migraine headaches. When I wake up my whole body aches. I can hardly move my arms and I have a lot of difficulty walking until I loosen up some. I am tired all the time and feel extremely tired after being awake for over 12 hours. I find myself crying a lot alone because of dealing with this and knowing there is no cure. I look around the house and see how much cleaning needs to be done and have to set my goals short and deal with it the best way I can. Fortunately my husband helps me do a lot of it and he does all the grocery shopping and cooking. I miss working and miss my coworkers. You begin to feel like you've been shut up in a closet sometimes and this is your life. Should I go to the store and then wonder how much more pain will you be in if you do.

There still are the positives in life that I am thankful for. I have two grown children that I am very proud of. I keep myself busy with needlework and crafts. If I can only make my bed and do the dishes one day, then that's all I can do. I went to a so called impartial medical examiner for the Industrial Board of Accidents. I was very upset when I saw him. On his desk was the SCS and pump. I told him that this is what the doctor suggested I have done. He asked me why I didn't have it done? 

I told him because it was another invasive procedure and that the guarantee of it helping was small. He had my paperwork and my myelogram report. When I told him I have arachnoiditis, he responded with "So a lot of people have that!" He says that I am permanently partially disabled and have chronic pain syndrome yet should be able to work 4 hours a day and increase this with time.

My Current Medications are:
Neurontin 2700 mg a day
MS Contin- 30 mg am and 30 mg pm
Soma 350 mg PRN - 3x a day
Ambein 10mg PRN - not to exceed 3 days a week

According to one of the doctors at the pain clinic, most arachnoiditis is caused by spinal fusion. But in my case it could be any one of these 3, trauma, injections, or surgery. Workman?s Comp wants to put me back to work and I will have that hearing to go to soon. I don?t understand how they could possibly think I could manage a 4 hour day job. I will be going to see a specialist on arachnoiditis soon and hope to get more definitive answers about what type of arachnoiditis I have and suggestions to prevent flare ups exercises to do or not do. And NO, He is not putting anything else in my back!!

I am so thankful for finding the ASAMS support group and finally making health decisions based on knowledge instead of trust. Boy did I go wrong there! We have a tendency to trust doctors without thinking. Just like a child with their parent. But a parent that has given life to a child holds their dreams and health concerns as a promise. They will do the best for them and would fight with all the strength they have to make their lives happy. Unfortunately, based on the fact that money talks it's the bottom line. When their outcomes are bad, do doctors really say I failed this patient or do they say the next test will turn out better? After all, everyone has some failures along the way. We are their failures and disappointments when it came to treatment. They don't want to acknowledge us for the most part. The surgeon that did my surgery didn't. When I called and told him that I have arachnoiditis his response was; I should go see Dr. ___ to have the SCS put in.

My primary care doctor is upset about what?s going on with me. She was so angry with the surgeon that did my surgery, about my pain and him not seeing it. She says that she wouldn?t know what to do for me; and I understand that. I don't blame her for sending me to him. She gave me his name cause she thought he was good.

I had quit smoking and gained weight and after hearing about this and taking all these meds started again. I cry too many times for my own good. But I guess some crying is healthy. After all, this is a loss to me. My life has changed completely and pain controls most of my life. I pray that the eyes of health care start opening soon and that there are no more victims of this disease.

An Arachnoiditis Sufferer.
Chris