March 10, 2001
VICKIE - MY STORY
Hi. My name is Vickie. I'd like to tell you my story. Before October 17, 1998 my life was pretty simple. I was a wife, a mother to two grown children and I worked with my husband in our small family sales rep. firm. We had a close and loving family and I was happy. My passion was gardening. My husband and I had both taken a Master Gardener's course at our local university extension. We had completely renovated our garden and added a pond. We were looking forward to Master Gardener meetings and conferences in the fall and winter and working in our garden in the spring and summer.
I'm still a wife and mother. I still work a few hours a day in the office. I'm still happy, but now my life is-----------, well different.
It started in July 1998. I had a small ache in my left hip, not really bad but persistent. From July 24th until October 15th I was going to my family doctor every three weeks, as this small ache turned into major pain, so bad that I finally quit listening to my doctor and went to the ER. I spent the last 10 days before going to the ER in the worst kind of agony I could ever imagine. My doctor kept prescribing stronger and stronger pain medication. By the time I went to the ER I was on OXYCODONE. It didn't even touch the pain. My doctor kept telling me over and over the last thing I wanted was back surgery. That with back pain like I was having, when you look at the statistics two years later, the outcome was always the same, whether you had back surgery or treat it like he had been, with physical therapy, muscle relaxants and pain medication.
At the time I knew nothing about the back, the nerves or how these two worked together. I had never had any major health problems, just things like gall bladder and tonsils, which I had surgery for and recovered right on schedule. I never really thought too much about doctors and the role they played in my health care. If someone had asked I would have said that I trusted my doctor to take good care of me.
That was a mistake. Not because I had a bad doctor, in fact I had a very nice family physician that I had been going to for the past 18 years. I never had any reason to doubt anything he told me to do. That was wrong. I wouldn't be in the condition I'm in now. I have learned that many doctors don't really consider pain in the lumbar region to be anything that could cause permanent nerve damage. Many treat it the same way my physician did, with physical therapy, muscle relaxants and pain medication. This treatment can last anywhere from 4 weeks to 6 months or sometimes even longer. That is fine unless their patients develop warning signs or "Red Flags" as they are called. These Red Flags are:
1. Severe pain in radically (nerve root) pattern: back, buttocks, perineum (saddle) area, genitalia, thighs, leg.
2. Loss of sensation: often tingling or numbness in the saddle area.
3. *Bladder/bowel/sexual dysfunction: incontinence, retention of urine, incontinence of feces, impotence, loss of ejaculation or orgasm.
4. *Loss of reflexes: knee, ankle reflexes may be diminished, as may anal and bulbocavernosus.
This combination of symptoms arising suddenly is regarded as a medical emergency and requires immediate medical attention to avoid permanent nerve damage. *Excerpt from "The Tale of the Horse's Tail" written on behalf of the Cauda Equina Support Group Sarah Smith (nee Andreae-Jones) MS BS Patron of the Arachnoiditis Trust
That isn't too hard to understand, is it? How I wish someone had told me that when I was going through the terrible agony I experienced during the ten days prior to my going to the emergency room. As I said before, my doctor wasn't a bad person, he didn't intentionally set out to hurt me. But he did end up hurting me, I am damaged for the rest of my life. There are two things I fault him for not doing.
The first is for not ordering a MRI after the first 6 weeks, when instead of getting better I was getting a lot worse. The second is that he did not alert me to any of these danger signs. I had been going to him for 18 years, I trusted him. When he told me that the results are always the same, whether you ride it out like we were doing with the physical therapy, the muscle relaxants and the ever-increasing pain medications or had surgery, I believed him. ALL he would have had to do is say "by the way if any of these things happen to you let me know". I would immediately have asked him why, if the results were always the same, why would there be ANY danger. Believe me, if I knew there was any kind of damage that could be done by waiting I would NEVER have hesitated to get the help I needed. During this time my husband would hold me in his arms and I would cry, both of us would end up crying and I'd ask him how I could possibly be having this much pain without it doing any damage. We talked about it, but decided that my doctor would never allow anything bad to happen to me and he must know what he was talking about. As stupid as it sounds now, I thought I was being brave and doing the right thing by enduring all the pain I did.
I finally came to the end of my endurance. I had not slept for days, I was in terrible pain in spite of the strong medication I was on. I was, in a word, completely worn-out, (does that count as two words? (Smile) I woke my husband up at about 4am on a Tuesday morning and told him I had to go to the hospital. When we got there I was seen by the emergency doctor on duty. I told him my sad story and he asked me what I expected him to do. I told him I expected him to give me something to make my pain go away, now!!! By the way, this is something else I've learned since this started. Often when you go to the emergency room in terrible pain many doctors presume that you are a drug seeker. Well you know what? That morning I was seeking drugs, or ANYTHING to stop the pain.
They admitted me and put me on a morphine drip. I can't tell you how great it felt to be pain free. It was so wonderful. And I was able to sleep. That is all I wanted to do. I was pretty much out for the rest of that day. I remember a doctor coming in and introducing himself as a neurosurgeon. He told me not to let the fact that he was a surgeon frighten me, it didn't mean I would have to have surgery, we just needed to find out what was happening to me so he wanted to have a MRI done the next day. That was fine. My family doctor came in but I was pretty much out of it and I didn't talk to him. My family was in and out. One of my fondest memories was waking up one time and seeing my husband sitting there next to me pushing the button to the morphine drip and just smiling so sweetly at me, knowing how happy I was to finally get some sleep and he was happy too. That was a good day. No pain and I could sleep.
The next morning I had the MRI. Later that afternoon the neurosurgeon came storming into my room, demanding to know how I had been able to stand the pain I was in. I told him I finally hadn't been able to and that was why I was there. He told me that my disc at L4/5 S1 had ruptured INTO my spinal column and was crushing all the nerves in that area. Normally when a disc ruptures the matter from the disc will go to either the right or the left side of the spinal column. It is unusual for the material to go into the spinal column and when this happens it is usually an emergency. He told me that when he first looked at the MRI film he thought there was a blur on the film because he couldn't see into the spinal canal. On further investigation he saw that the film was ok, it was just such a huge rupture and there was only a tiny pinpoint of light passing through where those nerves were. He told me we needed to do surgery the next morning.
I know now the extent of permanent nerve damage is directly related to the duration and severity of the nerve root compression. It is very important that action is taken as soon as possible to avoid this permanent nerve damage. So all the time that I was home suffering and trying to stand the pain, I was actually hurting myself even more.
However at that time I knew nothing about this. I just expected to have the surgery and everything would go back to normal. Later that night, once I had slept as long as I needed to I started moving around a little in bed. This is when I first noticed how numb my body was below my waist. I couldn't feel the numbness before, all I could feel was pain. It was such a strange feeling, like when your foot goes to sleep but all over. I remember thinking how glad I was that I was getting the surgery the next day, because that feeling would drive me nuts. I also found out that night that I couldn't walk without a walker nor have a bowel movement. I started getting such a feeling of dread. What was going to happen to me?
I had the surgery as scheduled, a laminectomy/discectomy. My surgeon told my family that everything looked good. I was released from the hospital the next day. I was told nothing about any complications. I left the hospital expecting to recover from a pretty simple back operation. I still wasn't able to walk, but no one at the hospital asked me if I could. They used a wheelchair to take me down to the car and then my husband helped me in. After I was home for a few hours my daughter went out and rented a walker for me. I still thought this was normal. The numbness was still there. A few days later I found out that I still wasn't able to have a bowel movement. I used laxatives and finally enemas. During this recovery time I was on VALIUM, VICODIN and a muscle relaxant. I slept a lot for the first week or so. I was told to take it very easy and not to lift anything over 5 pounds. Also I could only go down stairs once a day. This was all normal for my type of surgery.
I saw my surgeon for my 6-week check-up. By this time I could get around using a cane. I was very unsteady on my feet and I had no strength in my feet or legs. I wasn't able to stand on my toes. For some reason that has always bothered me, a lot. I was also worried about the numbness. The only area below my waist that wasn't numb was between my lower thighs and my knees. My doctor thought I was doing just fine. He wasn't worried about my bowel problem, he said it would just take time. As far as the numbness, he told me that it too would just take time. I told him I also had terrible pains in my rectum. I thought it was from hemorrhoids I had had for many years and had gotten worse with the surgery. He referred me to a colon/rectal doctor.
I liked and trusted this doctor right away. I told him what had been happening and after my exam he had my husband come in his office. He told me that the hemorrhoids were inflamed and probably very painful and he could remove them if I wanted him to, but I had a much bigger problem. He told me that my bowel was DEAD. He said I had no sphincter control, the feces could get into my intestinal track but I had no muscle working to push them out. He told me that this was from nerve damage and there was no way of knowing if those nerves would regenerate. If they did it could take as long as a year or more to happen. He told us that if they didn't I would have to seriously consider having a colostomy. He spent the next few minutes telling us how they had improved this process and there were doctors, lawyers, all kinds of people walking around with them and you'd never know. I was just crushed and so confused. What was going on? Why wasn't I getting better? When I called my surgeon to tell him what the colon/rectal doctor said he was just furious, at ME! He was yelling that how could my bowel be dead, if my bowel was dead I'd be dead!! He never actually answered me about what was wrong, he just raged over the wording. He then said he would fax me a script for physical therapy. That was the end of that discussion. Who was I to argue?
Along with the rectal pain I was also having some other very strange symptoms, like being out somewhere and thinking I had water running down my legs. I would go to the bathroom and there was nothing there. I couldn't believe it. I knew I didn't imagine it, but where was it? I was completely dry. I also was having a problem that was very embarrassing socially. I was passing gas, without any warning, any time and anywhere. I couldn't feel it coming on and I had absolutely no control over it. Another strange thing was when I would go outside barefoot I would get this odd, painful feeling, like I was walking on glass. Adding to that was this intense burning pain that started mid-back and went down both my thighs. It was so hot that I felt like if someone touched me they would burn their hand. But of course they wouldn't, it was just another odd nerve damage reaction.
The good thing for that is that there was a drug that stopped this pain completely. It is called NEURONTIN. It is actually used for people having seizures, but doctors discovered it worked well with stopping the burning pain associated with nerve damage. I now take 2000 mg daily and I have no problem with burning. What a wonderful success! I was and am so grateful for this drug. There are some people that cannot tolerate this medication. It makes them feel confused, slow and disoriented. My advice for anyone starting this medication is to give it a while, often these feelings pass as your body grows used to it.
I started PT the following week. This was in late November of 1998. My surgery had been on October 17th. I was about 7 weeks post-op. The script indicated a normal follow-up for a back surgery patient. We started off slow but as the physical work increased, the rectal pain increased.
By this time I was slowly getting off the VICODIN. I could do the exercises but the pain afterwards was terrible. It was either stop the physical therapy or have the reason for the rectal pain removed. I knew the PT was very important for a successful recovery. So I called my colon/rectal doctor and told him I wanted to have my hemorrhoids removed because they were just hurting too had. I knew the surgery was less than pleasant. I had heard this before and my colon/rectal doctor told me that he had had the same surgery less than a year ago and it was pretty awful. I figured it must be pretty bad if the doctor that was going to do it to me told me it was terrible. He did assure me that he would make sure I was taken care of after the surgery.
This was a tough decision to make. But I wanted to get well. I wanted my life back and I knew the only way it would happen would be for me to be able to do my physical therapy and as long as I had this pain I could not. My therapist had told me that unless I could get a handle on the pain she couldn't treat me in the manner I needed. So off I went to the second surgery in 3 months.
Yes, it was pretty awful. But my sweet doctor was true to his word. He kept me in the hospital for 6 days. This is unbelievable for a hemorrhoid surgery, but he just told the nurses that I needed the extra time because of the nerve damage. So for those 6 days I was again hooked up to the morphine pump. I was beginning to love that pump! Especially when I had to do the first enema two days after surgery. By the way, I didn't love the morphine pump because it got me "high" or anything like that. I loved it because it stopped the pain!
It took 6 weeks to recover enough from the surgery to go back to physical therapy. During that time I was doing some of the milder exercises at home. But I was getting nervous. The rectal pain was getting stronger and stronger. I went to my colon/rectal doctor for a check up and he told me it was looking good but I needed about 10 more days and then come in and he would release me. He couldn't account for the increased pain. He thought maybe I was overdoing things. I also was starting to develop the strangest feeling in my vaginal area. It felt like I was 9 months pregnant and the baby was pushing, trying to get out. During this 10-day wait the pain continued to increase. What had gone wrong? I went back 10 days later and I told him the pain was getting worse. When he examined me he was surprised to see that everything looked normal. In fact it had finished healing and looked great. He told me that I needed to go back to my surgeon and find out why I was having this pain, It wasn't pain from the surgery and he thought it must have something to do with my nerves. I was devastated to hear that the pain had nothing to do with the hemorrhoids. That surgery had been for nothing!
I called and talked to the surgeon. He ordered another MRI and had me come in the day after, when he would have the results. When my husband and I went in he was elated. He showed us the films and pointed out the spinal canal and showed us how clear it was. No problem there, he had done his job successfully. I asked him about the rectal pain and also the new problem, the feeling of pushing from inside. For the pushing he told me to get an appointment with an OB/GYN and see if anything was wrong. As for the rectal pain, he said maybe it was a part of the Cauda Equina Syndrome. I said the what? I had never heard this term. He repeated Cauda Equina Syndrome, as though we had discussed this a hundred times.
He suggested that I go to a physiatrist. I didn't know what a physiatrist was. I learned that they are doctors that handle all facets of the body. They diagnosis your problem then oversee the treatment, dealing a lot with the mechanics of the body. He also sent me back to physical therapy. I started the PT, got appointments for the OB/GYN (2 weeks) and the physiatrist.
As I was waiting for my appointments with the OB/GYN and the physiatrist I started trying to find out something about Cauda Equina Syndrome on the Internet. The first couple of sites I found were about CES in animals. I finally found a few sites with a little information about CES. In brief this is what I found:
The Cauda Equina are the nerves that leave the lower spinal cord and travel inside the spinal canal BELOW where the true spinal cord stops (at about L2 vertebrae) before leaving the canal and going to the legs, bowel, bladder and genitals. A Cauda Equina Syndrome is what you get when you impair the function of many or all of the nerve roots in the Cauda Equina. Since these nerve roots serve sphincter and sexual function, sensation around the perineum (anus, genitalia), sensation in the legs, muscles throughout the legs, etc., it is possible to get pain and numbness as well as bladder and bowel dysfunction, sexual dysfunction and muscle weakness in the legs. So simply put, CES is damage to these nerve roots.
Basically this is a spinal cord injury, but since it is in the Cauda Equina area, not the true spinal cord, it doesn't get the attention that spinal cord injuries do. I certainly had never heard of it and no one I knew had either. But it sure fit every problem I was having to a T.
When I went to the OB/GYN he told me that my uterus had dropped and I needed a hysterectomy. There are various degrees of "drop" and mine was #1 in terms of needing attention right now. The doctor said this may have happened because my muscles in the pelvic area were too weak to support things. So after discussing this with my husband I scheduled my 3rd surgery in 7 months. I put off the appointment with the physiatrist until this was done. This was one thing that went exactly as planned. Almost immediately I felt the pressure leave. It took about 4 weeks for the feeling to go away completely and it did! Wow, something worked just as I had hoped. Things must be looking up!
That surgery was the end of April and by about the first week in June I felt well enough to see the physiatrist. I was still having the terrible rectal pain, and it was getting worse all the time. I was on the Vicodin, my NEW family physician had prescribed them for me.
The Physiatrist wanted to do an EMG first, to rule out any active nerve damage. On my first visit we talked about the pain and how he hoped to get me off the pain medication. I told him that was what I wanted too, I wanted the pain to go away. He told me that from now on he wanted to be the only doctor prescribing Vicodin for me, which was fine. We did the EMG on my second visit. The EMG, instead of ruling out damage showed that I was having extensive, ongoing damage. Something was causing some kind of impingement on a nerve or nerves somewhere in the L4/5 S1 area, the same area I had surgery. He decided to do a MRI to see if it showed us anything. The MRI was scheduled for 3 days later.
On this visit I talked to him more about pain management. I asked him if he prescribed narcotic pain medication for his patients if all other things we tried didn't work. He said he only had one woman on narcotic pain medication and she was 80 years old. He said before he had seen my EMG results he would have said no for me because I was only 52. But after seeing the EMG it was evident I was having extensive problems.
During all this time, I had been on the Internet, asking questions on forums that had a doctor to answer questions, reading any and everything I could about CES (not a lot there) or any type of back problems and also pain forums. In fact I joined two groups. One group is for Chronic pain. The guy that is the Webmaster (that always makes me laugh) has so much information about treatment for pain as well as how to handle doctors. I have learned so much about pain in general and pain management from him. It was Jim that gave me the courage to ask my doctor if he would prescribe opiate medication IF and ONLY IF all other means failed. I would have never had the nerve to ask that on my own. As it was I waited for the second visit to ask him. Jim says you have to ask the nurse, receptionist, whoever answers the telephone when you make your appointment. I would never feel comfortable doing that, it just doesn't feel right for me, but I do believe that you should ask your doctor.
The other group I joined was COFWA, a group for Arachnoiditis. I had read a lot about it and it sounded so much like what I had. ASAMS hadn't been formed yet. This was a great group of people and they were so friendly and willing to help someone new who didn't really know anything, not even my own diagnosis.
My doctor, the Physiatrist, called me after he got the results of the MRI. He said it didn't show any type of disc herniation or any other obvious signs of nerve impingement. It did show epidural fibrosis. I asked him if this was the same as Arachnoiditis and he said no. I then asked him what he planned to do next. He went into all the different plans, PT, bio feedback, all those things. I asked him about pain medication. He said he would slowly wean me off of it.
My next question was what if I followed all his orders and still none of it worked and I was still in pain, what would he do? He fumbled around for a while and then I asked if he would prescribe pain medication if nothing else worked. His answer was no. I told him that I needed a doctor that I could trust and one that I knew would take care of me if I followed all his orders and still had the pain I needed to know that he would be there for me. He said he couldn't do that, it was against his principles. So I thanked him for his service and told him that he wasn't the doctor I needed and I wasn't the patient he needed. I then asked him to send all copies of any tests I had done to me, thanked him and hung up. I couldn't believe it. I fired my doctor. I was elated that I had the guts to do it because I knew it was the right thing to do.
Only one problem, Now I didn't have a doctor!
Before I go on I want to take a minute and talk about pain management. This is a very personal decision that each of us have to make. There is no right or wrong answer. It is just whatever you decide is best for you. I do believe that no one should have to suffer. Not with our technology and the medications we have now. Many doctors tell us that we'll get addicted to the pain medication. We won't get addicted, we will become dependent, the same as a diabetic is dependent on insulin every day. The research on pain management shows that less than 3% of people using opiates for pain management get addicted. I know there will be plenty of information on this site about pain management so that is all I will say on the subject.
Since I fired my Physiatrist I called my new Family Practice doctor. She is a nice person and a good doctor. She is also someone I can talk to. But she just did general practice, not pain management. We had a very interesting and surprising conversation. She told me that she had talked to both my neurosurgeon and my Physiatrist and they both agreed that I needed to go to a doctor they knew who was very good at getting people off medications. I was shocked. I asked her if she thought I was faking this pain. She said no. I then asked her if it didn't make better sense to find out what was causing the pain, get that taken care of and then worry if the time came and I couldn't get off the pain medication by myself. She said yes, that made sense, but she didn't know what to tell me. She said all she could do was give me two options. One was going to the doctor to get me off the pain meds. The other was to go to a neurologist to see if he could discover the cause of this pain. I took option 2 of course.
When I hung up the telephone all I could do was cry. I felt so confused and scared. What was wrong with me? Was I addicted and didn't know it? Was this pain all in my mind? Was I getting hung up on being sick and looking for attention?
My daughter called right about then and I told her what happened, crying as I talked. She was just furious. She said of course I had to know what was causing the pain and treat the cause, not the pain meds because once the pain was gone the pain meds wouldn't be needed anymore. That was just what I needed. She gave me back my courage and resolve. I called and got an appointment with this neurologist for the following week.
Thinking about seeing this new doctor gave me the willies. I had a chip on my shoulder now with doctors. I felt like I couldn't trust any of them. At the same time I knew that I needed a doctor, a good doctor that I could trust. I felt so nervous about seeing this doctor and having to explain everything to him. When I went in to see him I gave him all the records I had, took a deep breath, and told him what had happened to me. I told him that I needed a doctor to work WITH me. This time I made sure to talk slow and listen to him. I didn't try to fill in the silences. After I told him something I waited to let him respond. He was slow, patient and listened to me. He answered all my questions. After we talked, as he was getting ready to leave he put his hand on my shoulder and told me not to worry, that we would get to the bottom of this and he knew I had been through a lot. And I started crying!! So much for cool, calm and collected. I was prepared for him to be rude, but I wasn't prepared for his kindness!!
He was very worried about the EMG that my Physiatrist had done. He said it was grossly abnormal. He had me get an appointment with my neurosurgeon and another neurosurgeon for a second opinion. He wanted me to take my last MRI films and the EMG results and have these doctors go over them. He said there was something killing my nerves and he wanted to find out what it was and stop it.
I made an appointment with my neurosurgeon and the other one my neurologist wanted me to see. I was surprised to say the least at my neurosurgeon's reaction. He told me that there was absolutely nothing on the MRI films to indicate a problem. I asked him what he thought was causing the abnormal EMG.
He said an EMG was only as good as the person doing the test and he thought the person doing my EMG just didn't have the skills necessary to do a proper test. That was it. He didn't tell me go have another EMG and get back to him. He didn't tell me anything. That was it.
The other neurosurgeon also told me that there was nothing on the films to indicate a disc herniation or anything else that could be surgically done to relieve the compression. Then he told me that it was the scar tissue that was causing this damage, most likely a nerve or nerves were caught up in the scar tissue. I asked him if the scar tissue was Arachnoiditis and he said most likely, but it really didn't matter what it was called, it was doing the damage and there wasn't anything that could be done to stop it. He said the hope was that it would stop by itself, but no one could predict when or if that would happen. A pretty grime diagnosis.
When I went back to my neurologist he told me he wanted me to have another EMG, this time done by a doctor that was said to be the grandfather of EMG's. He said there was no way my neurosurgeon could dismiss this test. I had the test done by two different doctors working together. It took about 45 minutes. The odd thing is that most people hate having an EMG, they say it is very painful. I felt nothing, the most a small pinprick. I guess that is because of the numbness.
The first EMG I had was a score of 2+ fibs. I have no idea what that means, except that it is bad. The second test was even worse, it was 3+ fibs. I do know this means that I am having very active nerve damage, causing a lot of damage still. My doctor asked me if I would have a myelogram. I was terrified of them. Being in COFWA I knew that before they knew, it was a cause of Arachnoiditis. The depo-medrol that was used caused Arachnoiditis. They have not used this for some time now, but a myelogram is an invasive procedure and it is not advisable. I discussed this with my doctor and his feeling was that maybe, just maybe a myelogram followed by a CT scan might find something the MRI didn't show and we would be able to stop this nerve damage. I finally decided to have the myelogram. I was terrified but my doctor assured me that he knew the doctor who would be doing it and he would take good care of me. He did. It went off with no problem at all. I didn't feel a thing.
The unfortunate part was that the myelogram didn't show anything that would be causing the damage, except Arachnoiditis. There it was in black and white. Nerve clumping and all. At last I finally had a diagnosis. Along with the Cauda Equina Syndrome I had Arachnoiditis. That was what was causing the terrible pain and the ongoing nerve damage.
My doctor felt terrible about this. Over time I had been able to talk to this doctor, he was eager to get information about Arachnoiditis (I gave him Doc Sarah's paper on Arachnoiditis). He wanted a cure but he knew all that could be done for Arachnoiditis was to manage the pain and just oversee my general health. He offered to send me to the Mayo Clinic. I told him that through my support groups I felt like I was pretty much up to date on the research and I didn't think there was really anything they could do for me there. He agreed and now I am going to him every few months.
He prescribes the pain medication for me. Right now I am on MS CONTIN, HYDROCODONE, 10 mg for break through pain, NEURONTIN, Zoloft and Elavil. I'm not completely pain free but I'm ok, I can manage. And I have my wonderful doctor. I trust him and I respect him.
I don't know what the future holds for me, but then again none of us do. I do know that I don't want to let this illness define me. I always like to think that things happen for a reason. Sometimes we can't see or don't know the reason, but I always believe it is there if we look hard enough.
During this time, as I was trying to find out what was happening to me medically, I was learning a lot on the Internet about Arachnoiditis and pain management. There wasn't much on the Internet about CES, but a few people started writing to me that had CES. They found my name and e-mail address on the forums where I would go and ask questions. I was amazed at how similar our stories were. I was also angry when I found out so many of these people, after surgery to relieve the compression, were sent to rehab hospitals to learn to manage things after this devastating injury. I thought of all the months I spent trying to find out what was wrong with me, feeling so alone and scared.
I was still in COFWA and when ASAMS started I joined them as well. I kept up the correspondence with the people with CES. It was getting to the point that I was having problems keeping up with everyone. I would be talking to one person about something and start thinking how I wish someone else that I corresponded with could hear what they had to say. That is when I decided that there should be a support group for Cauda Equina Syndrome. ASAMS was using ListBot for their group so I decided to use it as well. I named the group CESSG, for Cauda Equina Syndrome Support Group, of course. I figured we'd have maybe 8 - 10 members at the most. CES is said to be very rare and I read once that there were only 25 cases reported worldwide. I wasn't prepared for the number of members we did get. One right after the other. I invited all the people I was writing to, they would tell someone else about it and it just grew from there. In fact I got so busy that I couldn't keep up with two Arachnoiditis support groups so I quit COFWA and stayed with ASAMS, thinking that they would be smaller and generate less mail since they were so new. Again I underestimated the power of the Internet. ASAMS has grown beyond belief.
I have found that getting involved with other people, reaching out to other people in pain is the best kind of medicine for me. I know how it feels to be alone and scared, so when we get a new member I understand their joy at finding others just like them. In our group we are normal, for us. That means a lot.
I'm also amazed at what good people working together can do. The Internet is going to change a lot of our lives. It has already changed mine. It is going to be fun to watch and see what is ahead for all of us in the future.
As for me, I consider myself lucky. I have a wonderful, supportive husband and children. I know they love me and will always be there for me. They are my rock. I also have great friends that stand by me, even though they don't understand what is happening to me. I have met so many great people on the Internet. It is amazing how you can feel so close to people you haven't met, but I do. I feel happiness for someone else's good fortune, sadness for their pain and anger for the injustice done to them. And there are people that I have grown to truly love.
With my support group I feel so much happiness when someone tells me that they don't know what they would have done if they hadn't found our group.
See, I've got love, friendship and people that need me. What more could I ask for?
It is now 2-1/2 years since I had the first surgery. Because of the arachnoiditis I am still having active nerve damage. My bowels are a constant problem. I have little to no feeling below my waist. Saying that makes it sound so cut and dried, but that reality is a constant. I NEVER forget that there is no feeling. That "feeling" of no feeling is with me constantly. It is like an alien that snuck inside my body and it is waiting, I have no idea for what.
Pain is my constant and unwanted companion. My left foot is getting worse every day and I find walking a struggle. My biggest fear is falling, which I believe is very common among most of us. I find myself relying more and more on my husband, to be there with me and hold my hand as I struggle through every day. I don't know what tomorrow will bring, but none of us do. Sometimes I get very angry, some days I just feel sad and yes, sorry for myself. I guess I really don't know how to act, this is a new life for me. I try to make the best of it and most days I do. Some days I even forget, for a while, that I am disabled.
Wow, I said it, disabled. It took me a long time to come to terms with that. I don't want to be disabled. But I am. I try to remind myself that this is only one small part of me. But some days it feels monstrous.