In Their Own Words

Diane C. Vecchione
Garden Grove CA

July 8, 2001

We had just completed our long anticipated trip to the Grand Canyon and were on our way back to Las Vegas with our friends, Barbara and Irene. We had stopped at the Casino at the state-line for a potty break and were waiting for Barb to bring the car up to the front door. I was waiting with Irene and Jerry when all of a sudden my left side went numb; from my waist to my foot. I almost lost my balance and grabbed onto Jerry's arm. I thought I had pinched a nerve or something like that in my back. We all got back in the car for the last hour and a half ride to Vegas. My leg was still numb but kind of tingly - like it fell asleep - a pins and needles sensation. I tried to move around into different positions in the car and rubbed my leg and even dragged the ice chest up to put my foot up on it. But my whole leg was still numb from the waist to my toes.

When we reached the house, I had to hold onto the car and Jerry to get inside. I felt like I couldn't control my leg and I was really off-balance. I laid down on the floor for about a half hour but it didn't seem to help. We were taking Irene to the ER, because she had not been feeling well on the trip and we were worried about her heart. So, off we went to the emergency room. It was about noon and my leg was still not "waking up."

We sat in the waiting room at the ER while they took Irene in. I put my left leg up on the coffee table to see if that would help. After about a half-hour, my right foot went numb! I really started to get worried. I tried to stand up to check in and couldn't put any weight on my left leg. It was like it wasn't there! I had no feeling in it at all. They put me in a wheelchair and checked me in and took my medical history. I told them about my asthma, my breast cancer surgery, my hysterectomy and the drugs I was taking for my asthma. The ER doctor thought I was having a stroke or aneurysm, so they ordered a CAT scan of my head and stomach. This all took a couple of hours. They both came back negative. At about 6 pm, the doctor ordered a spinal MRI. As it was after-hours, we had to wait for a tech to come in. While we were waiting, the ER doctor started me on an IV of Decadron. He said it would hopefully help to stop the inflammation or whatever was happening. By now my left leg was totally "dead;" it felt really heavy and I couldn't move it at all. The numbness in my right leg was moving up to my hip. Jerry said that about this time the ER doctor was looking things up in medical books and then he knew that something serious must be going on with my body.

After having the MRI about 10 pm, I was admitted to the hospital and was told the neurosurgeon would be looking at the MRI in the morning and that maybe he would have to do surgery! The tech thought they were looking for a crushed disk, but he really couldn't tell me anything more.

July 9, 2001

The neurosurgeon examined me in the morning and said there were no pinched nerves and everything looked normal in the MRI. He saw no need for surgery and would refer me to a neurologist. My left leg was involuntarily "jumping" all through the night. I can't make it move at all, but it "kicks" all by itself.

The neurologist came in later that morning and I had to explain all over again what had happened to me. He checked my legs for sensations with a paper-clip. He went up and down each leg poking me with the open end to see if I could feel anything. Both legs were numb and I couldn't feel anything at all. Then he pulled me up to a sitting position with my legs hanging off the bed and checked my reflexes. My reflexes were OK. He ordered a brain MRI. He thought I might have an infection in my spinal column from either Guillan Barre or MS, or an unusual infection of the spine, or a tumor pressing on the brain stem! Some choices! I had't been sick in ages - how come this all of a sudden?

July 10, 2001

The ER doctor and neurologist told me that the brain MRI was clear. They ordered a spinal tap. They then ruled out a stroke. The neurologist did not think it was Guillan Barre. Then they were going to check the blood vessels to my spine to be sure none were broken or that a clot had not formed in them.

July 11, 2001

All three doctors ordered tests and the lab tech came in throughout the day to take more than fifteen tubes of blood. The neurologist now told me that he saw a lesion in the cervical area from the MRI and he suspected MS. He was now going to order a lumbar puncture with MS panel; which they did later that afternoon. The Kaiser liaison lady came in and said they may have to fly us home to Orange County! Boy, I must have been really sick for Kaiser to be even thinking of doing that. The night nurse told me that my chart said `suspected transverse myelitis'?

July 12, 2001

I called my daughter who is a pediatric nurse and she said that she was going to try to find some information about Transverse Myelitis. The neurologist came in during the evening and said that I have MS and that he wanted to start a five-day course of high-dose I-V steroids immediately! I told him I wanted to talk it over with my husband and family first then with the other two doctors. And I asked about the results of the spinal tap. He blew up. Who did I think I was questioning him; he's the doctor and he told me he knew from the very beginning that I had MS and he didn't need the test results to tell him that! But I said I refused to start any treatment tonight until I had at least discussed it with the other doctors and my family. He walked out and I called my husband to come back to the hospital. I then called my daughter and asked her opinion and she wanted to know when was Kaiser sending me back to California; and maybe if it was in a day or two I could just wait till I got back home to start the treatments.

My husband talked to one of doctors who also said that he didn't like the idea of us rushing into treatments and then he asked for another doctor to see me for a second opinion. The neurologist really got mad and walked out again. Then we talked to the ER doctor who said that he would get another neurologist to come see me in the morning for a second opinion.

I didn't understand how this one neurologist could be so sure of MS when not all of the test results were back. What happened to his diagnosis of Transverse Myelitis? It just seemed that everything was happening too fast for me to comprehend and I didn't want to rush into any treatment that I really didn't need. The ER doctor said that he was going to recommend that Kaiser fly us home; it would be really hard for me to have to be sitting or trying to lay down in a car for a five to six hour drive back to Orange County. I was still receiving shots of the Decadron every six hours or so. The nurses even said that it was good that I was getting some kind of steroid into my system.

July 13, 2001

Kaiser decided to fly me back to Orange County the next day. The ER doctor decided to let the doctors back home decide what should be done. My other children drove to Vegas to check on me and their Dad. They had some information on Transverse Myelitis from the internet. It didn't sound like anything I would want to have. The information he brought on MS said that it usually starts when you are in your 20's to 30's. I never thought I'd be glad to be too old for something, but at 58, I guess that made it a little less likely that I had MS.

The PT came in and stretched my legs and moved both of them around to try and keep them loose. They gave me a booklet of exercises to do; that was not going to be easy as I could only move my right leg a little and the left leg not at all, except for the jumping.

July 14, 2001

I took the 50 minute flight back to Orange County in a Lear Jet with my husband, the flight nurse and an EMT. It was an hour ride in an ambulance from the airport to Kaiser Hospital in Orange County.

A neurology intern took a detailed history and did a thorough exam. I had more movement in my right leg; she said that was a good sign. My left leg jumped toward the end of her examination and she said that she was shocked at the force of movement in my leg. She ordered another MRI of the cervical and thoracic areas, as I was numb at the T- 10 level and down. She thought that if the lesions were MS related, I should have upper body problems, but I was okay from the waist up. She thought it might be a "spinal stroke" from a break of a blood vessel in my spine; but usually both legs are not involved.

They took another upper body and cervical MRI. The doctor also took me off Decadron shots; she wanted to see what, if anything, would happen. She ordered B-12 shots. She said they may do the I-V steroids, but only if the test results show a need. She ordered heparin shots for blood clots in my legs as I was not able to get out of bed.

July 15, 2001

I had a bad night; I couldn't get comfortable. My legs felt weird like they are swelling from the inside out! And my leg bones (inside) felt very cold; but the skin on the outside was warm to the touch; it is a very weird sensation. My left leg was still jumping; it goes on for hours and then it just stops. There is also some feeling of "pressure" in the center of my back; not really pain, just an uncomfortable feeling. My right leg seemed to be moving a little more, which was great.

When the intern came in to check me, my left big toe moved! My right leg had been moving more every day, but this was the first time anything on my left side moved. The neurologist came in with a large group of interns. She ordered physical therapy to come in and get me out of bed. Hurrah! I hadn't sat up in over a week.

I also got the best medicine; my grandkids came to visit! I told the doctor I needed for her to get me out of bed so that I could play with them again. Casey just jumped right up on the bed with me. I thought all the tubes and stuff would bother her, but she didn't even notice; she just wanted to give me a hug and kiss. And little brother, Daniel, wanted out of his stroller so Grandma could give him a kiss and hug, too! The PT came back and sat me up again for an hour this time; I never knew sitting was so strenuous. I was exhausted!

July 16, 2001

The PT came and got me out of bed. I sat up in the chair and ate my lunch. It feels great to be up and out of that bed, but also very tiring. He said I was not to get out of bed alone, to get help from PT. I was to call them whenever I felt like getting up or getting back into bed.

The neurologist came and checked me over again, She still thinks it was a spinal stroke incident; they are waiting for the spinal tap results. She said as long as I was continuing to improve a little bit more every day on my own, she would not do the steroid treatments. I was able to "push" back a little bit with my left leg. I was also able to feel the coldness more intensely between my shin and hip. When I asked her about my chances for recovery, she said that I had good incentive to work at the physical therapy and should get as far as I was willing to work.

July 17, 2001

I had a better night's sleep. My legs feel so "cold" inside. The nurse puts socks on me and even a heated blanket and in a few minutes my feet were cold again. My left leg jumped for about an hour without stopping. My right leg seems to be waking up; it is more tingly and I can move it a lot more. I did some of the heel dragging exercises the PT showed me and it seemed to help.
The intern came in and checked me over again. I had more sensations in my left foot, but I still cannot tell which direction they are pointing my big toe. Things are improving everywhere. It's got to be from all the prayers and good wishes and phone calls I have been getting. All of our families and friends and co-workers have been just wonderful, sending cards and calling and putting me on prayer lists. It's so overwhelming, I just lay here and cry. I need to know just what this is and how to make it better and get to work on getting out of this bed and home again.

The intern told me that the neurologist and the other consulting doctors have been discussing my case and have decided to move me to a rehab center as they feel there is nothing else that can be done for me in the hospital. I need more PT than they can provide. They want me in a rehab facility with physiatrists.

The doctor ordered a measurement of urine output. I have been going on the bed pan, but cannot feel that I am going; I can hear the release into the bedpan. They need to know how much I'm emptying out my bladder. They will catheterize me after every output to see how much is left. I have been going 350 to 400 ml at a time. I have still not had a bowel movement!

During the night, I try to move my right leg as much as possible. I move my left foot up and down and if I really concentrate, I can move my left knee up just a teeny tiny bit! Hurrah, something is working. I'm only sleeping about two hours at a time.

July 18, 2001

I have still not had a bowel movement; I feel like I could explode. They ordered milk of magnesia and a suppository. The doctor from the rehab center came in to check me over; he thinks I'm a good candidate for their program and they are going to set up the transfer. They think I'll need about three weeks of therapy at the rehab center. They will work on my bladder and bowel function and, of course, getting me back on my feet. The plan is to then get me a couple of months of outpatient therapy there and finally at the Kaiser facility.

That night I was moved in an ambulance to the rehab center. I no longer have a room to myself; there are three beds in each room and people are everywhere. I am right by the door, the middle bed is empty, and the lady in the last bed has about ten people walking up and down and back and forth. And here I am in my little hospital johnnie! I don't know if I'm going to like it here. I like my personal business to be mine; not sharing it with everyone in the room and in the hall.

A nurse came in and began asking me some of the weirdest questions: did I think I was abused, either at home or at the other hospital; did I have any bruises or marks on my body; have I fallen since I've been in the hospital? What kind of place is this? I began to cry. I had to repeat the whole story again and added in all of last weeks happenings at the regular hospital. I hadn't urinated all afternoon and there was still no bowel movement!

That evening, they moved the woman to a different room. I was going to have more privacy. I was going to start potting training tomorrow. I finally had a bowel movement, involuntarily, in the middle of the night. G-d bless these nurses. I seem to be crying all the time. This is just so humiliating, to be a grown person and not be able to control my body. The night nurse said to get a good night's sleep as I would be having lots of evaluation testing in the morning.