Pat's History

My back problems started in 1965 when it seemed like all my  back muscles went out. I hurt and ached from my neck down to buttocks. I went thru muscle relaxants, physical therapy, intramuscular steroid injections, heat, massage, rest, the whole works and nothing seemed to help much. After many months the pains in the upper back settled down but the pain in the lumbar area continued and just seemed to get worse, so finally in the latter part of 1965 I had a myelogram done with Pantopaque and  followed immediately by a discogram.  The tests did not show any disc problem but I developed a severe headache following the myelogram and had much pain in both legs. What was supposed to be just a 2 day stay in the hospital ended up with my remaining in the hospital for an entire week and I would have had to stay longer had I not lied to my neurosurgeon when I said my headache was gone.  He had informed me that I cannot leave the hospital until my headache was gone completely, but I just could not stay there any longer as I had to get back to work, so I lied to get out of there.  I returned to work with my headache which lasted for another week before finally subsiding. 

My  back pains continued after returning to work as a medical typist in the radiology department. My job was sitting and typing xray reports 8 hrs day, and I loved my job, but sitting and typing all day was very painful on my back .  There were days one of the office girls would  have to drive me home because I was in too much pain to walk or drive myself. 

Over the years from 1965 to 1980 my back pains continued and I think I took just about every type of steroid medication on the market, and I was eating aspirins every 2 hours to try and keep the pains down, and I had many cortizone injections . I went through several jobs (had to  finally give up my typing job). I had physical therapy treatments about every year and ultrasound treatments ( these treatments would give  me good relief for several months at a time) but then the pains would return with a vengeance.  So I returned to the orthopedic surgeon and  he would give me a steroid injection directly into the area of my spine where the pain was the most severe.  He would poke and prod up and down my spine until I was able to tell him where the pain was the most severe and that is where he would place the needle.  (were these depo-medrol injections  I do not know,  and a fire in his office years ago destroyed all the medical records) so there is no way for me to find out exactly what he had injected.  The first injection did give  me good relief within 24 hours and  this continued for the about 10 months. Then the pains would come back with full force so I would have to go back to the orthopedic surgeon and get another injection. The second one only helped for about 6 months and the third injection gave me no relief at all.

The back and leg pain was unrelentless and I was back to taking all those  steroid drugs again, and there was one that really gave me good relief  (cannot remember the name, it was a combination of 2 very potent drugs) and then the FDA took it off the market because the combination of the 2 drugs was too dangerous ,but heck, it was the only thing that kept my pain level down enough to continue working, and being single I needed to work. I  remember I cried when my family doctor  told me I can't get that drug anymore and we could find nothing afterwards that would give me that same relief from all the back and leg pains I was having.

I saw several different doctors over the years but they all said nothing was wrong, it was in my head. The usual crap, you know, that we all go through with these doctors. They don't know what is causing all our pain,  so it's in our heads.

In 1976 the pains became constant, 24/7, and I was getting daily headaches and  was still working every day.   Finally in late 1980 I could no longer work at my desk job as a secretary in a physicians office and had to quit.  I  finally went to a  neurosurgeon in the Cleveland, Ohio, area and was admitted to the hospital  for a series of tests and treatments for what the doctor said was  a severely degenerated disc. I had a myelogram with Metrizamide followed by another discogram, then I had an intradiskal injection of Depo-Medrol,  a paraspinal block using Depo-Medrol and then an epidural injection with Depo-Medrol.

An EMG-NCT test was done and showed extensive bilateral nerve damage from T10 ,all the way down the L-S spine, and then on the left the damage continued down my left leg , and on the right the damage  was down to my knee area. The neurosurgeon told me he could not tell me what caused this extensive nerve damage and it could not have been caused by the L3 disc problem  because one disk could not do all that.  No other tests were done to try and determine what would have caused this problem.  (But I believe now that it was the myelogram with the Pantopaque dye that caused all the damage and that arachnoiditis was present).

In Feb.1981 I had the following surgery; L3 total disc replacement using a calves bone from the bone bank) bilateral decompressive lumbar laminectomy and interposition silastic graft. The pains in my back and left leg continued even after the surgery and my leg would go numb at times and I would fall.

Finally in 1984 I went to a new neurologist in my area and he admitted me to the hospital  and I had the myelogram followed by CT scan. This is where the diagnosis of Arachnoiditis was made. I finally had a diagnosis for all my severe burning pains, numbness, headaches, chronic constipation, etc, etc., but no explanation was given me about this disease. I learned about it from watching Geraldo Rivera's talk show. And then the internet came along and wow, the info came flowing in!    The progression of my Arach was  fairly slow at first and I was able to do light work around the house,  work in my garden. But as  each year passed by I would notice that I was able to do less than the previous year but I still was able to do some things. Then 2 yrs ago I fell full force on my behind and that was the beginning of a steadily downhill progression of the Arachnoiditis pains and  problems. The burning, stinging, buzzing, stabbing, numbness (of both feet now) the intense pains around the lower rib cage ( which makes me feel like I am being squeezed to death) , the weight gain,  the feeling like bugs crawling on my legs, or jolts of electricity shooting thru my toes and feet, and all the other pains we all have ( can't think of all of them right now)  oh yes, and the memory loss have all come on at a faster pace and I am now very limited at being able to do anything around my house. The pains in my feet are so intense at times I cannot walk or put my shoes on, and the time I can spend sitting at the computer became very limited. 

So I now have a computer in my bedroom so I can lay and use the computer.  I very seldem go out anywhere because my feet are so painful and it hurts to wear shoes or even socks.  I can't travel for any long distance in a car because sitting hurts too much , but I do sometimes drive myself just to the bank or grocery store and the doctors appts.   I have to be careful driving tho due to the numb- ness in my right foot.  It hurts to stand, sit or even lay anymore, finding a comfortable position is almost impossible.  I think finding a needle in a haystack would be easier. My whole life is changed by this arachnoiditis,  I used to be on the go all the time, but now I  am a house-potato.

I still have my flower garden and I work in it the best I can.  I do love and enjoy the flowers and all the beauty they bring to my yard every year.   I also have 5 cats and 1 black Lab which keep me busy most of the day.  They are my reason for getting out of bed every day, no matter how much pain I am in, they keep me going and moving even when I really don't want to. Thank goodness for these beautiful creatures. They give me a reason to keep going on.

I don't get depressed anymore (got over that many years ago). I just get angry that someone did this to me and never warned me it could happen. And I get angry because I can't do all the things I would like to, and I hate having to depend on someone else all the time to help me. But am learning to live with all these pains and problems that go with having Arachnoiditis. 

Thanks to all my cyberfriends out there that help make my days. 

My medications are; Darvocet N 100 3xda for Pain, Baclofen 10 mg. 2 at bedtime and prn during the day, Doxepin 10 mg. 1 at bedtime .

I am now taking different vitamins and minerals to try and see if I can get some relief from all these pains.  I take MSM 2500mg twice a day for a total of 5000mg daily, and on some days I take up to 6000 mg.    The MSM has completely stopped my daily "killer" headaches, (what a relief that is) . And it has eliminated my chronic constipation problems that I had for over 20 years. I am now very regular!  I take Vitamin E 400mg. daily, B-complex with C, Calcium tablet, and Premarin.  And just recently started taking Magnesium, Omega-3 fish oil, Alpha lipoic acid, B-12, B-complex and I am noticing a decrease in the amount of burning pain in my feet.  I have also noticed a decrease in back pain which I have to credit to these supplements that I now take daily. My pain levels on most days are at tolerable levels. I do not have complete pain relief, but if I can keep the pain at these tolerable levels,  I am happy with that for the time being.  A total complete relief of pain would be better, but that is probably an impossibility with this arachnoiditis.

 

Pat Blake in Ohio

December 11,2001