I am 32 years old and live with my two cats in The Hague, in The Netherlands. As Vickie already told you, on Wednesday the 24th of May this year I got low back-pain. As I have a long history of back-pain, I wasn't very alarmed. Most of the times the pain would go away in a few days. On Friday morning, on my way to work, my left leg began to tingle and soon after that the right leg, too. It felt like I was walking on cushions, I could hardly feel my feet anymore. Then both my legs failed and I fell down on the street.
I was brought to the hospital by ambulance, was examined by a doctor and then got sent away with painkillers and muscle-relaxing medicines, and told to come back for a CT scan in 10 days to check if I didn't have a herniated disc. During the next days the pain in my legs got worse, I had never felt something like it before. My skin, especially in the saddle-area, felt numb. On Sunday-afternoon, the pain got so bad that I couldn't stand it anymore. The weekend-doctor came and immediately called an ambulance.
In the hospital they did a thorough check this time and discovered that my Achilles-reflex had gone and that my bladder didn't function properly anymore. A CT scan showed an enormous herniated disc at L4/L5. A neurosurgeon and an anesthetist, who were on weekend-duty, were called and within an hour I was brought to the operating room. It was about 11pm then. The removal of the herniated disc took away the pain in my back and legs, but left me with - as I heard later from the physiotherapist - the Cauda Equina Syndrome. I had never heard of this before. Due to the damaged nerves I could barely walk; the muscles in my buttocks, the back of both legs and in my feet were very weak. I also had great problems with my balance, my skin felt numb in the saddle area, the back of my legs and feet, and I had problems with my bladder and bowel. I had been in the hospital for two-and-a-half weeks and then spent 2 months in a rehabilitation center because I couldn't function at home (I live alone in an apartment on the second floor without an elevator).
I have been home for about 2 months now and still have physiotherapy 3 times a week. The power in my muscles has improved over the last months. In the house I can get by without crutches. Outside, I use my crutches because my balance is still not very good. The numbness of my skin has not improved at all.
My neurosurgeon, whom I saw last week, was quite positive about the recovery of the strength of my muscles, but also said that the sensibility of my skin will never recover 100% because the nerves have been damaged too much. My bladder and bowel function have improved slowly, but I still have constipation and although I am able to urinate, I have to squeeze very hard. I also have little feeling in the sexual area.
Having read some of the stories from other CES-patients at the Neurology Web forums, I realize that I have been lucky that the doctors have operated relatively quickly and that my situation is not as bad as the one most of you are in. I have only been in this mess for 4 months now and still have hope that things will improve as time passes.
I certainly am doing my utmost to get on track again, by daily doing the exercises my physiotherapist has given me, going for a walk twice a day, exercising daily on my home trainer and trying to go swimming once a week.
Mentally, I often find it difficult to cope with my limitations. I used to be quite an independent person. Now I have to rely on friends and family for a lot of things and that is a big adjustment. I feel I have lost a lot of freedom. I often feel locked up in my body and in my house. I can't use my bicycle because of my balance-problems. I don't have a car and even if I had one, I wouldn't be able to drive it because I can't use the pedals. Sitting in a restaurant or a bar is something I can't keep up for very long. And walking outside, I feel vulnerable. If something happens, I won't be able to run away.
I guess you all experience these feelings, too. I simply have to find a way to deal with them. I also am aware of the fact that my condition has brought on many positive things. Like the warm and loyal friendship of family, friends and colleagues, the sincere support of strangers who pass me by in the street and the opportunity to think a lot about the way I want to lead my life.
I see that I have written quite a long story. I hope I didn't bore you and I look forward to getting to know you all.
This weekend I am "celebrating" my first CES-anniversary and I would like to let you know how I'm doing. I hope my story will encourage the members who haven't got to the one-year-mark yet. I remember when I joined the CESSG at 5 months, someone wrote to me that it was still early days and that I had every chance of more recovery, I just had to have a lot of patience because it could take a while. The experience of others really helped me then to get a better perspective on my situation. In the early stage of CES, you don't know what to expect and that is very frustrating.
About my recovery: a year ago I had an acute centrally herniated disc on L4-L5 and was operated between 48 to 72 hours after the start of my problems. Since then, my body has been slowly recovering. I hardly have any pain, except sometimes electric pains in my right lower leg at night. After the operation I could barely stand on my feet. However with a lot of exercise my muscles grew stronger and now I'm walking without any aide (though I still carry a folded cane in my bag, just in case) and I can keep walking for half an hour to an hour. I can't stand on my toes yet. My balance has improved, but I'm still a bit shaky on my feet and my gait is also not back to normal yet (swaggering left leg; people in the street sometimes look at me as if I am drunk (but I don't care!). For a few months now, my bladder is almost back to normal. I just have to concentrate more than I used to. For my bowels I still have to use Metamucil (concentrated fibers) twice a day. Orgasms are back since January. The numbness in the saddle-area, back of my legs and under my feet is still there, I find it hard to tell if there is any improvement in that area, if there is, it is very little.
I have begun working again in October (6 hours a week; I have a desk-job) and I am now working 16 hours a week. For the hours that I don't work, I receive a benefit from the government. My energy level is still low, I can't work full time yet, but I plan to be fully back to work before the end of this year.
My mobility has improved greatly when I was able to get on my bike again without losing my balance, and last week I got the go-ahead from the government to drive an automatic car, finally! (Up until now, my leg-muscles were too weak to make an emergency-stop). I am in the process now of buying a car, which gives me great joy (and independence!).
Mentally, I feel quite strong now, although there are good and bad days, of course. I always use the "mountain-metaphore" when I think about my journey to recovery: I feel like I'm climbing a mountain. It takes a lot of strength and it is quite hard and I have no idea where the top is, it is in the clouds, I can't see it. Regularly I stop and look behind me to see what ground I have already covered. Then I feel proud and grateful and I take the time to enjoy the view and the beautiful surroundings and I feel happy. That is how I gather energy to go ahead and go on climbing. I have no idea whether I will make it to the top, but I have good hopes and I certainly have the will to get there. Does this all make sense?
All in all, I have a lot to be thankful for and I expect to get more recovery in the next year. Of course, the pace of recovery will be slower. But I am prepared to do all that is in my power to become again the healthy, young woman I was before the 26th of May 2000 (I have promised myself that I'll be able to run again within the next year...). I have no intention to give up yet.
The CESSG has played an important role in my mental recovery. I don't write a lot, but I read all the posts and feel a part of this group. To know that there are people out there who struggle with the same problems (and many of them are having more serious problems than I have) and who, although they have never met me, are always willing to help and inform and support, meant and means a lot to me. Thanks, folks!
Margreet (from the Netherlands)