I just want to set the record straight. Many of us VHL folks that have had spinal cord surgery go through a state of paralysis because of trauma to the spinal cord. Some may have permanent damage because of injury to the spinal cord during surgery and others may have a temporary period of paralysis. Only through dedication and hard work can these people expect to regain any mobility.

Only through dedication and perseverance was I able to walk out of the hospital about five weeks after cervical spinal cord surgery (utilizing a cane). I feel this is only because I had physical therapy five days a week, 6-8 hours a day, while I was in the rehabilitation unit in the hospital.

Although I was able to walk out of the hospital, I had total paralysis of my left arm with shoulder subluxation. This is because the trauma to the cord happened mostly on the left side. It took nearly three additional years of occupational and physical therapy to get where I am today. Even if the feeling doesn’t come back, you can often learn to use your limbs in a different way and get back on your feet.

No one can guarantee that function will return, but if you don’t try I can guarantee you that it won’t. If the people that are paralyzed today do not work hard to improve their condition, the only thing I can tell them is to get a comfortable pillow for their wheelchair. If the doctor has not prescribed physical therapy -- right away -- then the family needs to make noise and get the therapy needed. If nobody will pay for a therapist, the family can learn to do the exercises and do it at home. Don’t give up too soon, don’t assume that damage is permanent until you have tried hard for months. It is not easy. It takes initiative and persistence and a desire to accomplish what they are trying to do. Even after all that hard work it still may not work, but you won’t know unless you try, and then you will not be left to wonder what might have been if you had worked harder.

Do whatever it takes to get the strength and courage to do what you must. This is one thing that no one can do for you. You must do this for yourself. The surgery is the easy part, you were sleeping. The doctors and surgeons did their part you are alive, but it doesn't end there. This is just thbeginning, the beginning of a long arduous process. Rehabilitation is probably one of the hardest things you will ever do in your life, but it will probably be the most memorable. In 1987 when I was going through my rehabilitation, the Rocky movies were very popular. Before and/or after my grueling therapy, I would put on my headphones and listen to "Eye of a Tiger". These were the last words I heard every night before going to sleep. Sometimes the therapy was painful, but it was more frustrating than painful. The real pain begins when the wounds start to heal and you realize you can't do the things you used too. What really hurts even more is knowing that you didn't even try. I remember when getting out of bed was a chore. I also remember showing up to therapy with my shoelaces untied. I especially have fond memories of finally tying those shoelaces. Even to this day when I feel like I need some form of formal therapy, I ask my general practitioner for a prescription and off I go again.

Muscles atrophy very quickly if you don't use them on a continuous basis. Therapy should never stop-formal or otherwise. Walking is therapy, cooking is therapy, even folding laundry is therapy. When you move any muscle in your body (especially the ones that are difficult to move) is all considered a form of rehabilitation. Remember the old adage-if you don't use it, you will lose it? Doing physical and occupational therapy may not lead you in a so called state of "normal," but there is only one direction to go, and that is doing better than you were doing. The sooner you start your therapy after surgery the easier it will be. This is also the time you gain the most function.

If it was your child that went through what you have gone through, would you let them give up?

As printed in the VHL Family Forum 7:1, March 1999. For permission to reprint, please contact VHL Family Alliance, info@vhl.org.

mystory