The CT/Myelogram, the Results and my next surgeries - & hopefully my last!!!

For quite some time, Dr. Glazer had wanted me to have a CT/Myelogram. I said, "No way". I had heard horror stories about myelograms. To understand a CT/Myelogram, you have to understand which each test is and why sometimes it is combined into one. I'm sure you are well aware of, and probably have had, a CT Scan. If not, a CT Scan is really just like a huge x-ray. The scan provides a radiographic image of a single body plane. It is particularly good at imaging hard tissue such as bony structures. The equipment is shaped like a donut or ring with a movable table that slides in and out of the ring. The scanning system includes a computer that creates pictures represented as cross-sections or slices of the target anatomy, such as a specific part of the spine. Capturing similar images is not possible with traditional x-rays. That’s a CT Scan. Painless.

Now, a myelogram is an entirely different test. It is a diagnostic tool that uses radiographic contrast media (dye) that is injected into the spinal canal’s fluid (cerebrospinal fluid, CSF). After the dye is injected, the contrast dye serves to illuminate the spinal canal, cord, and nerve roots during imaging.

Thus, when a CT scan and myleography are combined (a CT/Myleogram) images are produced that clearly show both the bony structures of the spine and the nerve structures. These images are invaluable to physicians as they diagnose a patient’s spine problem.

Now, the horror stories I have heard were barbaric and this was a test that I had tried to avoid for many years now. However, when I had last seen Dr. Glazer and I told him that I was ready to proceed, the first thing he said was, "You need to do a myelogram for me". NO!!! He said, "Yes". I said, "Fine". He said, "No worries, I'm sending to you one of the best in the business, you'll be fine". Yeah, yeah, yeah. That's what they always say!!! Well, needless to say, the knee situation had come up and I had to cancel the appointment - TWICE!! First time because I had to attend a conference, so I rescheduled for about 4 weeks post-op from the knee surgery (because remember, I was told I would only need a few weeks to recover!). Well, there was no way I could go through with this test, laying on my stomach no less, with swollen knees that couldn't bend yet!! By the time I got around to rescheduling AGAIN, I had to call back to Dr. Glazer's office and have them start all over with a pre-authorization. I had now created more work for everyone! Finally the day came and off me and my friend Dee went. I had to do the "pre-op" stuff and get the instructions - nothing to eat after midnight (here we go again), someone has to drive you home, no work the next day, you must take it easy so you don't put strain on the "hole" that is made in your spinal canal and cause a leak. Blah, blah, blah. I was so scared. Much more nervous and scared than I had been with the neck surgery or the knee surgery! As usual, they were running behind and it was several hours before I was finally brought in to the special radiology center of Dr. Steve Reddy at Beth Israel. Hours behind schedule, and after being given an anti-anxiety medication hours earlier as well, I was happy to now receive whatever drugs they would give me. I was told to lie on the table on my stomach, I explained that I have Flatback and that is nearly impossible, they said, "We know. We are going to help you" and they brought some pillows and did their best to make me comfortable. But the best part was that they immediately started a line and the drugs were given to me instantly. The worst part was when they injected a local anesthetic. Although I was mildly aware of what was going on - I really wasn't? They then proceeded with the spinal tap in which they remove some spinal fluid and replace the same amount back with dye. In someone without a fused spine, you would lie on your side and pull your knees up to your chest to open the vertebrae, but with a fused spine there is no point. Nothing's opening! In my (our) case it is best to lay on the stomach to get the "best picture". In the middle of the procedure, they rotate you to allow the dye to fully incorporate into the spinal canal - like mixing a cake! Towards the end of the procedure, I remember that I suddenly had "the" dreaded myelogram headache and I must have turned my head or started to lift it up and Dr. Reddy, using his hand, forced it back down and said, "Valerie, don't move. Why are you moving?" and I remember saying, "I have a headache" and I heard him say to someone something about giving me more something or another, which I could only assume meant more drugs and then I barely remember anything. I do recall them telling me that they were bringing me to the CT now and I said, "Ok". I mean, c'mon, they could have taken me anywhere and I wouldn't have really understood or cared. I remember them waking me saying, "Valerie, CT Scan is all done". Yeah, ok. Back to sleep I went. They kept me there for several more hours and Dee took me home. My instructions were not to lay flat, but elevated, rest and drink plenty of water to facilitate the elimination of the dye. No real movement for a couple of days. I was fine almost the whole car ride home, but about 20-30 minutes from home, I fell fast asleep. I could barely make it in the house and the kids said I was "loony" the next morning when we talked about it. I just remember being tired, but they said I was saying all kinds of foolish things that didn't make any sense. I was just glad to have it over. For something I was so scared of and something that I had dreaded for so long, it really wasn't that bad of an experience. I had some awful twinges and strange feelings on the second night (which they had warned was common as the dye leaves the body) so I took 2 Percocet and fell asleep. This part was all done.

Dr. Glazer called with the results at a time when I was least expecting it. I was driving home from work and on RT 95. I answered the phone and heard, "Valerie dear, it's Dr. Glazer". I wanted to yell, "Now? NOW is when you call, when I am driving home?” Of course, I didn't.

He said, "I have the results of your Myelogram in front of me and it's not good." Now, that's a great way to start a conversation, isn't it? He proceeded to say, "It shows you have severe forminal stenosis, are you experiencing more numbness or more sciatica now?” Yep. I was. "Hmmm", he says. He continued with a list of not so wonderful things and finally said, "You know, I know it's really inconvenient to come to Boston, but I think you should come in so we can talk about next steps". Alrighty. I should move to Boston.

I called the next morning. (Aren't you proud of me?) I made an appointment for a couple of weeks later. Once again I find myself taking that all too familiar trip to Boston. Dr. Glazer entered and said, "So dear, I guess you feel you've put me off long enough, huh?" He said a lot of things at the visit but in the end it was obvious that I needed to go ahead with revision surgery sooner rather than later. Dr. Glazer said that he would have Janet (office manager) call me to set something up. When he left, I said, "Guess I'll see you in the OR". He just smiled.

Janet called me a few days later and I told her that I needed to set up the appointment for revision. She said, "He wants you to do this soon Valerie, seems like he is worried about permanent nerve damage or cauda equina?" I said, "OK" And before I knew it the surgery date was set for March. I received the office notes a couple of days later. Reading my diagnosis was more difficult than hearing it. I've always been a visual learner and this was no different. It states that I have:

"very severe forminal stenosis at L5-S1 along with Flatback Syndrome. Surgical correction will require a 2 or possible 3-stage surgery which would include on Day 1 (1st stage), an anterior (meaning that he will cut me open down the front, through my abdomen) lumbar fusion from L2-S1 with a partial vertebrectomy at L3 and then on Day 2 (2nd & 3rd stage), a posterior (meaning that he will cut me open down the back, the length of my spine - I would imagine just opening through the current scar from my previous fusions) fusion from T6-S1,S2, which will include a pedicle subtracting osteotomy at L3. Risks and benefits of this procedure were discussed in detail using the language understandable to this patient, who is quite knowledgeable about Flatback and concurrent conditions."

Now, can you see why I've lived in denial for so long and put it all off for as long as I could?

So now you all know - I am facing 2 surgeries and they will happen on March 15 and March 16 at Beth Israel Deaconess Medical Center in Boston. I should be in the hospital for about 10 days and Dr. Glazer has always said it is a very long, grueling recovery. "Owners decision" - that's what he has always said. I received my packet in the mail recently and I've been a busy girl. There is ALOT to do to prepare for a surgery of this magnitude. My next post will include all of this and other pertinent information, but not in this one. As I type this it is 1 o'clock in the morning and this girl has to get her rest!!! Good night my friends - I'll post again very soon. Thanks for all of your support. Love to all of you! Good night - sleep tight.