What Exactly is a Tethered Spinal Cord?

It took me an addition 11 years to get the diagnosis of Tethered Cord Syndrome or TCS. Back in 2000 when I had the brain surgery, the words TSC where never uttered. I will not go into the very long and frustrating journey I had to travel in order to finally get diagnosed. But let's say, it was pretty much the same road I took before they found out I had a Chiari Malformation.  Back in March of this year I ended up in Long Island NY at the Chiari Institute. Yup, that's right, all the way to NY to get the diagnosis. Now what exactly is a tethered spinal cord? I'll give you the medical definition because it explains it best.

This disorder is caused when a thickened filum terminale(an elastic -like structure) limits the movement of, or "tethers" the spinal cord within the spinal column. The filum terminale or “terminal thread” is a normal structure that stabilizes the spinal cord within the spinal canal but has no real neurological function. Over time the tethered spinal cord is repeatedly stretched whenever the patient bends at the waist or flexes their neck. The repeated stretching of the spinal cord eventually causes symptoms such as bowel &  bladder incontinence, leg & back pain and numbness, balance disturbance and weakness of the legs. 

The tethering may affect the function of the entire spinal cord even though the structural problem lies at its lowest point. As a result, those affected by tethered cord syndrome may complain of headache, nausea and even arm pain.

Tethered spinal cord is frequently diagnosed in children, usually in conjunction with spina bifida. An adult tethered cord syndrome has also been described. This is not associated with spina bifida but may occur in patients with the Chiari 1 malformation. Some doctors believe that spinal cord tethering may be one of the causes of Chiari  1 malformation.

The Big Day!

My surgery was scheduled for 7:30 in the morning. They wanted me to arrive there for 5:30. Anyone who knows me well, knows I am not a morning person! I awoke at 4am, took a quick shower and got dressed. It was still a bit dark out when we arrived at the hospital. We checked in and then sat in the waiting room. I filled out another form and very soon after, they whisked me away.
I must say, I felt all the prayers carrying me, just like I did prior to my brain surgery. It was incredible. I actually felt like I had taken a tranquilizer. I felt such peace. I got into the fashionable Johnny and then Michael was called in. We were left alone for about 10 minutes and then an orderly came to wheel me away. I kissed my husband and off I went. I was lying flat on my back so all I could see where the overhead fluorescent lights rolling by. When I got to my destination, I was greeted by the Nurse Anesthetist. He was a middle aged man with a white beard and a double hoop earring. He had the kindest face. I asked him a gazillion questions and gave him a few requests. He was so patient and reassuring.  He promised me that he would do everything that  I asked him to do and that he would take good care of me for the next six hours or so. He made me feel so comfortable. There is a down fall to being a nurse. You know every possible thing that could go wrong! I was then wheeled right into the operating room. This was a first for me. In the past, I was always prepped and sedated in a pre-op room.  I was lying flat on my back and could not really see who was in the small closet like surgical suite. I called out "who is my Anesthesiologist"?  He quickly walked over and introduced himself. I told him that I would like to meet all the people who would be working on me. So one by one, he introduced me to all the attendees. I think it's important for people to see you as a person, not just a patient. The nurse took my arm and started the IV.  We were laughing and joking around. The sedative was then given.  I looked up to the Anesthesiologist who was telling me a story and said "you better finish your sentence now because I'm leaving yoooooooooooooooou". I could feel myself being pulled into Never Never Land......

Honey, you should try the Goat.

I decided that it was best that I get the surgery over with as soon as possible. I hate the rainy season and figured it was the best time to be confined to my bed. I made the surgical appointment for the following month. My Pain Management Doctor got me in touch with another woman who had surgery for tethered cord by the same neurosurgeon. What a blessing! She was able to answer my questions and send me a list of things in order to prepare. I ordered the hospital bed for my bedroom, and bought handlebars for the bathroom. I even packed earplugs and an eye mask to minimize sensory overload. I made all the preparations and that gave me a sense of well- being and some control. I counted the days. I was actually anxious to get this whole thing over with! I still struggled with worrying about my kids. Especially my youngest Caroline. The other two were old enough to take care of themselves, but Caroline still needed me. I was fortunate enough to have my in-laws take her for the week that Mike and I would be in N.Y. I was also blessed to have a friend offer to take her for the first week I was home. Another friend organized a chart so that I would have a friend come stay with me every day for the first two weeks. All of this took an enormous load off my mind. I knew my kids would be well cared for and so would I.
So the day to travel to NY finally arrived. Again we decided to go up the night before. Morning came and I needed to go the the hospital for all the pre-op paperwork. That took a couple of hours and then we went back to the hotel for a little nap. I knew I could not eat or drink past midnight so I wanted to have a nice meal. We found an authentic Indian restaurant. I ordered my usual Channa Marsala and I convinced Michael to order the goat, simply because I was so curious about it but not daring enough to order it myself. It was actually quite good. We took our time eating and then headed back to the hotel. I took a shower with the prescribed betadine sponges, got dressed for bed and tucked myself under the covers. Tomorrow was the big day. I said my prayers and drifted off to sleep........

It's up to you New York.......New York........

The day finally came to head to Long Island for two days of testing. We traveled the night before and stayed in a hotel. My testing would begin at 10:00 am that next morning. I was quite anxious about having the urodynamic test. I had good reason. However, my appointment was changed last minute and I was sent to a pediatric office for the test. THANK YOU GOD! It was all I could say. The test was much easier and less uncomfortable than I had anticipated but I failed it miserably. Next we drove to the hospital. I think I filled out forms for two hours! They asked for everything but my first born child. I then was called for a full spinal X-ray. Then back to the waiting area, Johnny and all. Next was the 3-D CAT Scan. Then back again to the waiting room. Finally my last test. A MRI that I layed on my stomach for. Not the most comfortable position, but it was the last test of the day. My poor husband must have sat in that waiting room for 6 hours! Good thing he had my iPad and Bookworm game. The testing was over for the day and my husband and I were both hungry. We decided to go out for a nice quiet dinner. Back to the hotel and then back to bed. Morning would come quickly and it did. Off to the famous Chiari Institute. I filled out forms and then waited. I was called to meet with my nurse. She asked lots of questions and then back I went to the waiting room. Hours later, I met with their Neurologist Dr Kula. He was VERY different than any other neurologist I had ever met before. He knew his stuff. He asked me tons of questions and then examined me. He even made me walk around the office on my heals and then my toes. He took notes, explained the condition and then sent me back to the waiting room. My next appointment was with the Neurosugeon. We waited another three hours! Finally Dr Kula told us that Dr Bolognese got held up with some surgery and asked us if we would be willing to head to the hospital to meet him there. So we headed to the hospital, went and killed some time in the cafeteria and then went to the waiting room until the surgeon came for us. He was much different than I had pictured. I had watched him on his video conferences. He must have had a long day, and by the time on my watch, I suspected I was right. He told me that based on my tests and Dr. Kula's examination, they felt I was a good surgical candidate. He told me that he would present my case to some surgical committee and then get back to me as soon as possible. We asked some questions and discussed the surgery, shook hands and off we went. We had a three hour ride home and a lot to think about.

CONGRATULATIONS! You've been accepted...

I went on line and looked up the Chiari Institute in NY. I read through the web site. I knew all about the doctors there because it was their research that lead me to my first diagnosis of Chiari Malformation 1. They had come quite far in 11 yrs and now had their own Institute. I watched the video on tethered cord and I knew that was what I had. I felt this huge sense of relief. I filled out the questionnaire and checked almost every symptom. The question that blew my mind was " did you have an excessive amount of growing pains in your legs as a teenager". Wow! I just couldn't believe it. My mom was always calling my pediatrician about my legs constantly hurting. He would assure her that they were just growing pains. If that were true, I should have been 6 ft tall, not 5'2"!! So anyway, I completed the questions and mailed them in with my MRI and copies of my Neurosurgical notes. Weeks later, I received the call. It was the Institute saying that I was a candidate for them to evaluate me. I was thrilled! I was hopeful but guarded. Remember, I had been let down so many times before. I psychologically could not deal with another dead end. I made the appointment for the following month and then impatiently watched the days go by......

"I've had all I can stands, I canst stands no more"......Popeye

Since I could no longer exercise or even walk around the block, I became more sucked into my pain. I developed a new symptom. I had a sharp pain in the lower left quadrant of my abdomen. I went to my GYN.....nothing. I went to my GI doctor.....nothing. I even went to a general surgeon thinking he could do exploratory surgery. He told me there was nothing there! What was this never ending pain? I decided to visit an Endocrinologist. Hey, I had been to every other specialist around, I might as well. She was unbelievably smart. After an hour and a half consultation, she looked at me and said " I think all your problems are coming from your spine". Little did she know how right she was! I then went to see a few more neurosurgeons that said there was nothing they could do for me. Another DEAD END! I felt frustrated, exhausted and angry. I thought "not again!" The pain was unrelenting! It was beginning to beat me down. There was no getting away from it. I felt like I was losing my mind! One morning, I got dressed and went to see my GP. The nurse practitioner saw me first. I told her I could no longer handle one more day with this constant pain. I told her I had been dealing with this my whole life and that I was too old to deal with it anymore. I was almost 46 yrs old and I was worn down to the bone! I was done and at the very end of my rope. I had no more answers and no more strength to fight. They gave me some pain medication to hold me over and referred me to a Pain Specialist. I was hesitant, but I had run out of options.
A couple of weeks later I went to see a man named Dr. Chopra. He had the most compassionate face. He really seemed to genuinely care. He began to take my history. I broke down and began to cry. I had never done that before! I was truly at the end of myself. I felt completely helpless and broken and I could no longer hide behind my makeup and long blond hair. He handed me some tissues and told me that I seemed to have two separate problems. First he said that I had some type of autoimmune disease and then he looked at me and said " you need to go to the Chiari Institute". I could not believe he even knew about Chiari, let alone the Institute in NY! This doc had my total confidence. He said if I had a tethered spinal cord then they were the experts to see. For the first time in a long time I actually felt some hope. There is a scripture that reads " in our weakness, He is made strong". I knew God took the reigns of my life, because I finally gave up and dropped them.

My Eye's Begin to Open

I know how hard it was to be sick my whole life, but I could not see the pain my family was going through. I was never on the other side. As I got older, I began to get some insight. I have this wonderful friend. She lived her whole life with a sick mother and a severely profoundly handicapped brother. This friend carried the weight of the world on her shoulders and yet was able to offer so much compassion toward me. Over the years, her wisdom and trials helped to open up my own eyes. It was hard for me to understand how my kids felt. It was even harder to know what my husband was going through. They all seemed to keep it locked up inside. I figured they were "used to" me being sick and they were somehow immuned to it. I misinterpreted it as if they just didn't care. At some point, I began to realize that each person deals differently with pain and suffering. Some tacle it head on, while others run in the opposite direction. It's a defense mechanism. It's just the way we are wired. For so many years I only saw my perspective. And that perspective brought me incredible heartache. But it was because my focus was on how their responses affected me. I justified my anger because I felt I didn't ask for this, or I didnt bring it on myself. I somehow expected my family to understand. I used to think...." boy, so in so's mother is a raging alcoholic, treats her family like crap, but yet her kids are so good to her". That would enrage me. I felt that I pushed and pushed and tried so hard to be a good mother and wife. I would force myself up from bed so that a dinner would be on the table when they all got home. I did the best I could to keep the house clean. Everything I did was so strenuous and exhausting. I felt so taken for granted and ignored. I believed everything I did was for NOTHING! But once again, I was not in their shoes. All they knew was what they lived with their entire lives. I am sure they were scared, frightened, and tired of me being sick and so easily angered. I am sure it was easier to run away then to deal with me at times. They had NO idea what I was going through. How could they? It's strange, that despite all the misunderstandings, tensions, and blow-ups, we managed to maintain an incredibly close family. It's no where near perfect, but we all love each other so much. I like to humorously call us a "functional dysfunctional" family! Every family has their problems, but in the end LOVE always conquers all and covers over a multitude of wrongs.