Patients' Stories

Dianne's Story

My name is Dianne and I live in Colorado. In 1965 I was in my first automobile accident.  Back then, they didn't do much to help me but had me in a neck brace for 3 months.  No tests were ever done but I could barely get my head off the pillow to get out of bed.  After wearing the brace for 3 months, it felt good enough to go without it.

In 1974 brought another auto accident while riding with a friend.  I had the same neck problems and back spasms but they did some ultra sound and neck brace treatments again.  Once again, there were no tests run or any further follow through on it.  I was hesitant to seek further medical treatment as the man that hit us was not insured and I didn't have good medical coverage.

In June of 1982, I was hit by a 1 ton dually pick up loaded with hay and run into the ditch on the other side of the road.  The oncoming semi just missed me.  I was taken to the hospital by ambulance and after x-raysand was told to contact my regular doctor for further treatment.  The rear end of my car was nearly shoved in to the back window.  I was at a stop making a turn and the man who hit me was doing 45 miles per hour.

I saw my doctor 2 days later as the accident happened late on Friday afternoon and his office was closed over the weekend.  I had a concussion, horrible headaches, neck and back pains.  He saw me and immediately ran more x-rays. I was told to have bed rest for 2 more days and to see him again.  He was good at calling to see how I was.  When he saw I wasn't improving at all, he put me in physical therapy.  That seemed to help for a week but then it got continually worse. 

My attorney said I should contact this specialist to have my arm evaluated more as my left arm was hurting so bad that I could barely use it.  It radiated down from my neck area to my fingers.  He ran tests and then wanted a Myelogram done.  I had a leak after this Myelogram and had the most horrendous headache I have ever had.  It turned into migraines that lasted for 6 months.  After reading that and getting the EMG and Nerve Conduction tests back, he said I had Thoracic Outlet Syndrome as two of the nerves to my left arm and neck area were being compressed.  He operated in 1983 and they had to rebreak my left clavicle, remove the top rib, take out muscles behind my left lung and left side of neck and tied the rest into place.  He then put me into physical therapy again to help me regain some use of my left arm.  He said that I only regained about 80% use of it but it should be a lot better than it was. 

A few months later, I contacted him again saying my neck was still hurting and I was no better than before.  He made an appointment for me to see a neurosurgeon who could help me with that.  The neurosurgeon sent me in for another myelogram and more EMG and Nerve Conduction tests.  He then put me in the hospital for intense physical therapy.  This continued for the rest of 1983 and into 1984 with 2 more Myelograms being done and 2 more EMG and Nerve Conduction tests.

In 1984, the neurosurgeon said I had to have my neck fused as there were bone spurs over an inch long on my neck, a bony ridge had formed which was over 7 inches long, a nerve was being pinched off and 3 vertebrae had to be fused.  I also had a leak after the 3rd Myelogram and this started the headaches all over again. I was in a metal neck brace for 3 more months.  This was my 7th time in the hospital to this date.  I began physical therapy again to help me and after 8 months of it, he said that he felt no more physical therapy would help me.  I seemed to be doing better by this time and was glad of it.  I did report to him that I was having lower back pain but he didn't feel at that time,1985, that there was anything worth going in to take a look at.  He told me to keep in contact with him and if there were more problems to come back to see him.

In 1984, we had moved 125 miles away and enjoyed our new life living in the mountains.  In June of 1985, I went back in for my last check up and he found that I had carpal tunnel syndrome on my right hand and said it needed to be fixed immediately.  I had surgery for that in August and he then said my back was "tender" but not needing surgery at that time.

By early 1989, my lower back was starting to cause me more problems.  I went back to the doctor who gave me some exercises to do to see how that would work.  By 1990, it was so bad that I was walking with two canes and couldn't get around at all.  My doctor put me through my 5th Myelogram, EMG and Nerve Conduction tests.  It took 6 tries for them to get the needle in my spine this time due to the herniated disc and this sent a pain through my body like I had never had before.  The doctor doing this procedure said I would be fine but I believe there was damage done to me during this.  My doctor wasn't happy about it and said he would never have this doctor do Myelograms for him again.  This time the results came back showing I needed surgery right away as the nerves down my legs were being pinched, I had a herniated disc and ruptured disc and 2 nerves involved.  I had surgery for this in September 1990 and recuperated at John's mother's house.  After a week there and having the staples removed, he said I was ready for the trip home but I was to do it laying down with stops every half hour so I could get up and move. It was a long trip home, 125 miles, but we made it.

From there, I was back in his office every 3 months until 1991.  I was also put back in physical therapy to help me regain better use of my legs and movement.  He told me to walk on flat areas, no stairs, no heavy lifting and to walk in our local mall.  That was funny as we have no mall, our community had a population at that time of 2,900.  After my final check up in 1991, he said that it was all he could do for me and felt that I might be better for the rest of my life or continue to have problems.  At that time, he also announced his retirement which was sad.  He was a good doctor who was so good to me.

In 1992, I was told my nerve down my left arm was causing me more problems and that I had carpal tunnel syndrome of my left hand and my right needed to be done again.  I asked if therapy would help and they agreed to that as I didn't want anymore surgeries for a while.  I was also told by another specialist that I had arthritis.

In 1993, I became terribly sick and found out I had Helicobactor Pylori after having my stomach and duodenum biopsied.  This was terrible as I suffered with it for 8 months before they found out what it was and then it took a month to clear up.  It was caused by bad water we had gotten at a restaurant.  After that was cleared up, I had horrible pains which turned out to be gall stones passing and they had me in the hospital to get the infection cleared up.  Two weeks later, I had surgery to remove my gallbladder.  Within 6 month, I began to notice a lump where the surgery had taken place and was told it was a hernia and not to worry about it.

In 1994, I started noticing my lower back giving me problems and my feet were so tender that I could no longer go bare foot around the yard or house. I had some twitching and burning but it eased off.

In September 1995, I took a bad fall and reinjured my back, and right arm.  It took 8 months for them to find out I had broken my right elbow in the fall and torn the ligaments, tendons and muscles away from the elbow and when they tried to regrow, it compressed the two nerves going down my arm.  In 1996, I had surgery to correct that with a foot long incision down my arm but they couldn't get all the bone fragments out so they are still in there floating around.  By this time, my left foot was so bad that I couldn't stand it, it burned, jerked and felt like electrical shocks going off in it.  Shortly there after, my right foot started the same thing.  I asked my arm and hand specialist about it and he said he didn't deal with that but to expect arthritis in my arm.

I went to my regular doctor who sent me to several other specialists who "found nothing" and said they couldn't help me.  I had been to foot specialists who said it was Plantar Fasciitis and nothing could be done.  At that time, my doctor said he wanted to run glucose tests on me to see if I was diabetic and it came back that I was.  I had gotten all the necessary testing stuff to have at home and saw his specialist.  He had also sent me to a doctor in Colorado Springs who did an MRI and my doctor said nothing came out of it.  Then, two weeks later, my doctor called again to say they had run the glucose tests wrong and I needed them done again.  Not to my surprise, it came back that I was NOT diabetic.  I was in so much pain and crying all the time yet my doctor would do nothing to help me with it.  He refused to give me any pain pills or do anything further, wouldn't even refer me to anyone else saying it was in my head and there was nothing that could be done for me.

In 1997 I found another foot specialist who ran more EMG & Nerve Conduction tests and said I had tarsal tunnel syndrome which is like carpal tunnel syndrome only in my feet.  He gave me pain pills and physical therapy.

In 1998, he said I needed surgery on my left foot as it was getting so bad and turned in so much that it needed to be done.  I was on crutches for the next 2 months but the pain never left me and my left foot was getting worse.  He said I needed to wait until 1999 before he would do my other foot so I could recover more.  He was nice to give me mild pain pills which didn't even touch the pain.  Some of the other doctors had tried me on other pills that did nothing either.  My lower back was getting worse and my right foot getting to the point of my left foot.  I saw no gain or help in getting the surgery done but he said it would take a while for me to notice the help.  By this time, arthritis had set into my left foot and the swelling never would go down.  In summer, I was so swollen I could barely get a shoe on my left foot.

I changed doctors as I didn't trust the old one and the new doctor was appalled at how big a hernia I had was as it was hanging over the waist band of my pants.  She said it should have been taken care of years ago and my old doctor wouldn't hear of it.  I had surgery for that in May 1999 and even with a 7 inch incision, I was home the next day.  My new doctor didn't know what was going on with me and said I needed to go back to my foot specialist.  My foot specialist said no more surgery. He refused to operate on my right foot and said he was sending me to a spine specialist as he didn't like all he was hearing from me.  He was upset that I was not much better after the left foot surgery.

In 1999 I saw a spine specialist in Vail, Colorado who has a great reputation all over the world.  I gave him my history and the first thing out of his mouth was, NO MORE SURGERIES.  He then sent me to have another MRI and EMG and Nerve Conduction tests on my back and legs.  The EMG & Nerve Conduction doctor said he had no idea how or why I was walking because my tests showed so much damage he couldn't believe it.  He immediately called my spine specialist and told him the news.  My local hospital had forgotten to send the MRI report so I had to go back to see him.  I went the following week with the MRI in hand.  He showed me on the report where I had degenerative disc disease in the back, failed back surgery syndrome from the lower back surgery, and he felt that the 5 Myelograms had caused a lot of damage too. It was at this time he diagnosed me with Arachnoiditis and told me about the disease and what would probably be happening to me. He had no written information on this as he said no real studies were being done on it here in the U.S.  He suggested I try the internet to see what I could find there.  He also told me I would never be able to work again, should not lift more than 5 pounds and walk with a cane which I do. He also said that my limitations might become worse as time passed.  He said with some people they might not progress very much but in others it would be bad.  He suggested I get Social Security Disability since I'm only 55 and wouldn't be able to work anymore.

I applied for Social Security Disability and was turned down right off.  I got an attorney who finally said we needed to have a hearing which I had in April 2000.  During the hearing, a doctor who did not have my complete medical file, has never seen Arachnoiditis or treated anyone with it, determined that I was fully capable of working full time, lifting 70 pounds, able to sit 8 hours or stand 8 hours.  He had never examined me nor had my latest records.  The judge wasn't willing to read the reports I had from the U.K. saying he couldn't believe what was done in another country.  I was turned down again and started the appeal process all over again. Right after the hearing, my attorney showed me the report from the doctor in 1997 who ran the first MRI and it showed on that report I had Arachnoiditis but I was never told about it by him or my regular doctor.  My regular doctor said the doctor had "found nothing" on my MRI.  Had I known that, I could have gotten treatment, most of all pain pills, to help me with the incredible pain I was suffering.

After getting my diagnosis, my spine specialist sent me to a pain management doctor who is helping me with trying to get through this on a daily basis.  My pain management doctor is 110 miles away and making that trip is not easy on me.  My husband has to drive me there and back, stopping at least 3 times during the trip as it hurts to ride that far.  We often have a mattress and pillows in the back of our Blazer so I can lay down.  It isn't safe but no other way and no one in our area who treats this or knows about it.

We shouldn't have to leave our homes and families to live in areas we don't want to or can't afford.  There are days I'm bedridden due to the pain. Each time a storm comes in, I suffer so badly and during the winter, I'm lucky to get out of my house once a month.  I use a cane to help me walk, have a handicapped parking sticker, and usually use one of those carts to get around stores if they have them.  My pain management doctor has me on Neurontin, Oxycontin, Trazadone to help me sleep, and Vicodin to help with break through pain.  These levels were doubled last month as it is progressing and the previous levels were no longer helping me.  I am about ready to get a walker for the house as there are days it's all I can do to walk.  There have been days I've had to crawl to the bathroom or ask my beloved husband to help me.  Some nights, even with the Trazadone, I don't sleep well and am up most of the night.  When our bodies don't get the rest we need each day, the pain level is usually worse the next day.

There are days where I'm in so much pain that I completely break down crying and wish my life was over as I don't know how much more I can stand.  I have had thoughts of suicide as to be released from the pain and not have my husband see me suffer so much.  This disease is so debilitating and hard on our bodies.  I have developed a heart murmur due to the constant stress of pain on my heart, diagnosed with rheumatoid arthritis and degenerative arthritis of the hands.  I also have degenerative disc disease of the back.

Those of us who suffer with this disease seem to have other problems along with it.  Some have Multiple Sclerosis, Fibromyalgia or a host of other problems.  The medications, while they help to a certain degree, never get us pain free.  We suffer 24 hours a day, seven days a week, all year long.  The medications also play havoc with other parts of our bodies.  We get constipated for days on end, or diarrhea that will totally wear us out.  Some have developed gallbladder problems, dry mouth, teeth rotting when they weren't like that before, colon problems, heart problems, diabetes and the list goes on.

This just doesn't affect us, it affects our loved ones too.  My dear husband has days he doesn't know what to do for me other than just stay by my side.  Our children and grand children don't understand what has happened to us nor do our friends.  I have lost countless friends due to this as I can't do what I used to and they don't want to learn about it or afraid that it's catching.  Many think we are just putting this all on when we aren't.  My friends that I still have including my family have learned when they come here to accept me as I am that day or not to come over.

We didn't ask for this disease, we put our trust in doctors, their procedures, and what they knew.  I was never told about any risks having myelograms could cause nor how bad the last one was where they couldn't get the needle in or how much damage this could do.  We trusted these doctors, hospitals, care givers, and were dealt a bad hand. Most of us because it happened so long ago have no recourse on this.  The drug companies that made the dye for the myelograms never warned the doctors of the hazards of using their dye.  They knew about the hazards yet did nothing to stop the use of it.  Yet, Sweden banned the use of these dyes in 1948 (I believe that was the year) as they knew what problems came from it's use.  The U.S, didn't do anything about this until 1991. In some places, they are still using Myelogramdyes without warning their patients what could happen.  I don't know when this tragedy will be stopped here and we may never know just how many people suffer from this.

We need to get our stories told to anyone and everyone who will listen.  I don't believe there will be a "cure" for this in my life time but if we can help other's before they get to the point we are, we need to do it NOW.  It  wasn't until Christopher Reeve had his tragic accident that the U.S. started doing much in the study of the nerves, back or anything else along this line. Why does it always take someone like a famous person to get the ball rolling?  Why can't us little people be helped as a famous person would be?

We are at the point of having to sell things so we can pay my prescription bills each month.  My insurance company pays only $10.00 per month and my bills are over $400.00 per month.  My husband is 68 and retired so we have his social security yet I'm still trying to get my social security disability so our income is very limited.  Why can foreigners come to our country and get welfare or social security?  I worked for over 20 years and am being slapped in the face for doing the best I could.  Even while I was able to work, I was in pain and walked with a cane but now there is no way I can work.  I can barely write anymore due to the arthritis in my hands, can't sit very long at one time and most certainly cannot walk very far.  The doctor who testified by phone at my hearing said I should be able to walk at least a couple of miles a day, good luck.  I fall very easily, if something as small as a rock is under my foot, I fall, stepping wrong will make me fall yet I'm told I can walk 2 miles per day.

Yes, I'm angry about this dreadful disease but at least I know I didn't cause it or ask for it.  We need help, right now, not somewhere in the future when they get around to it.  I beseech any news organization to help us get this story out and told as we know there are many more with arachnoiditis.  Some doctors don't know what to call it and don't know what to do to treat us.  We need this told so many more can be helped.

Mrs. Dianne Gantzler