In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  It is important to bear in mind that all newsletters and journals are archived on our web site.  Should someone do an internet search of your name, your article is likely to be identified in their search results.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

Contracting and Combating Transverse Myelitis
Sabina Slavin
March 17, 2009

On Thursday, October 2, 2008, I was on the treadmill in the morning, as I tried to be every day.  In the afternoon, my left leg began to quiver.  I went to a dinner party that night and almost fell on my way to the rest room (other guests probably thought that I was sloshed!).  The next day, I went to see my PCP.  The doctors were perplexed and sent me to the Emergency Room.  It was a Friday afternoon, often the busiest day for an ER.  A neurologist examined me, looking for a stroke, which I had not had.  An x-ray was taken and I was told that I had arthritis in my back and should see an orthopedist.

The next day, I telephoned my PCP to report on my trip to the ER.  She told me to come and see her on Monday morning and she would arrange for the orthopedist.  But, if I got worse, to go to the ER again.  Later in the day, I was unable to use either leg.  My husband and I left the house to go to the ER, but I collapsed on the stairs.  I told him to call 911.  The ambulance arrived promptly and drove me the 12 miles to Danbury Hospital.  Again, they checked for a stroke and found nothing.  My left leg began to exhibit spasms and I was given an injection to ease my discomfort.  I was admitted to the hospital about 10 PM and soon discovered that I could not urinate.  A nurse inserted a Foley catheter and I was able to sleep.

At this point, let me say that I am a 67 year old female who has always been in excellent health except for arthritic knees.  I swam, scuba-dived, traveled, did about two miles on the treadmill four or five times a week and enjoyed my life in retirement very much.

Danbury Hospital is a teaching hospital and the neurological service always has a neurologist in the house.  They began diagnostic tests on Sunday morning.  I had MRIs of the cervical and thoracic portions of the spine (with and without contrast) and the neurologist performed a spinal tap.  Nothing was found that could have caused my problem.

On Monday, MRI’s of the lumbar portion of the spine and the brain were done – again with and without contrast.  The neurologist came to me at 2 PM and told me that I had transverse myelitis between T 10 and the first lumbar, L1.  No sclerotic lesions were found in my brain.  They did find an aneurysm, but they would deal with that later.  Treatment with an IV infusion of 1 gram of Solu-Medrol (methylprednisolone) was begun within the hour and would be repeated for four more days.  The doctor told me that I might not see some improvement for two weeks and that he hoped that I would walk again.  A side effect of the treatment with steroids was a dramatic elevation in my blood sugar.  This was treated with insulin injections until the steroid treatment was finished.

There were numerous discussions as to the cause of my TM, but the conclusion was that it was idiopathic.

The next morning I could lift my legs about 6 inches off the bed!  I was delighted and the doctors were amazed.  A physical therapist came to see me and got me up into a chair.  I also received a visit from an occupational therapist and I was told that I would be moved to a rehabilitation floor the next day.  When I arrived there, I was given a tentative discharge date of October 29th.  To make a long story short, I was discharged on October 22nd.  By that time, I was able to walk with a walker and climb stairs using banisters on both sides.  I continued to experience the bladder and bowel problems that other sufferers of TM have reported.

Our home has grab bars at the front and back doors (due to a previous illness incurred by my husband resulting in a bilateral craniotomy.  Fortunately, he is fine now).  We also have grab bars in the bathroom and the shower and our bedroom and bath are on the ground floor.  That made readjustment to life at home easier and safer for me.

I cannot say enough about the quality of the care that I received at Danbury Hospital – from the very early diagnosis that I received through the excellent physical and occupational therapy that was given to me every day.  The Hospital also has an out-patient rehabilitation center and I soon was receiving therapy there three times per week.  I progressed to a cane and then to walking unassisted.  They helped me to become more stable and improved my balance and helped to increase my strength.  Now I only use a cane when I go to museums or walk outside in the snow. 

A month after I was discharged, we began to address the aneurysm issue.  My neurologist sent me to Dr. Philip Meyers, an interventional neurologist at Columbia Presbyterian Hospital in New York City.  He advised an angiogram to determine the size and shape of the aneurysm to determine whether he could treat it with a coil technique or if it would need to be clipped.  Immediately after the procedure, he told us that clipping was required and made arrangements for us to meet with Dr. Robert Solomon, Chairman of Neurosurgery at Columbia Presbyterian.  Surgery was scheduled for December 31st to clip the aneurysm which was about 15 mm in size and oddly shaped.  It was located at the bifurcation of the middle cerebral artery, but was not very deep.  I was transferred from the operating room to the Intensive Care Unit after about six hours under anesthesia.  The next day I got up and walked to the neurosurgery unit and the day after that I went home!  Three days later, some 34 staples were removed from my 20-cm incision and I have recovered completely from the surgery!  It was truly a miracle that the aneurysm was discovered by accident while the diagnosis was being sought on my TM.  I had the surgery while I was healthy, and not as an emergency to repair a ruptured aneurysm.

So how am I today?  I was “kicked out” of physical therapy last week and started today in the adjacent supervised gym.  I am walking fairly easily, but I do get tired when I stand for a long time, as in a museum.  Some days (like yesterday), I feel almost normal.  Other days (like several days last week), I am quite uncomfortable.  The bowel problem continues, but I am dealing with that.  My husband and I went to Switzerland last month for two weeks to visit our daughter and her family who moved there in August of 2008.  We had a great time!  And next month, we are going to Bonaire for 12 days.  We will snorkel, but scuba diving is out for at least six months.  I am hoping to continue to improve.  I did one mile on the tread mill yesterday in 25 minutes and 1.2 miles today in 30 minutes.  As I get more stamina, I want to walk for a longer time.  I will probably not go faster than three miles per hour, as I have osteoarthritis in both knees and that limits my walking speed.

I was so fortunate to be treated at Danbury Hospital.  My doctors had seen a few cases of TM before, but very few, of course.  The care was excellent.  The support I received from my husband and family and friends was outstanding.  People came to see me in the hospital and said that “I looked great!”  I always replied that I was great from the hips up!  Thanks also to Sandy Siegel for all of the helpful information that he provided about TM – something I had never heard of before.

If anyone wants to chat with me about my experiences, don’t hesitate to contact me at (203)438-3258 or SabinaSlvn@aol.com.  I would be delighted to be of any help that I can.

Sabina Slavin
128 West Mountain Road
Ridgefield, Connecticut 06877