Last Thursday, I faxed a 3 page letter to my new neurosurgeon. I knew I'd be seeing him on Monday, March 8, and I knew there were a few things that I wanted him to know up front, when he would be considering the new imaging done a few weeks ago, the lumbar MRI and the cervical SPECT scan.
Here is the text of that letter, with my doctor's name removed for his privacy.
March 2, 2010
I came to OHSU and had the SPECT scan and lumbar MRI done on Monday, Feb. 22. I had to wait for authorization from my work comp insurance company, but finally got it done.
Will you be letting me know the results of this imaging?
I wanted to call your attention to one thing I was unable to share with you at our last meeting. It may be of value when assessing the lumbar MRIs. My OR report from the tethered cord surgery at North Shore Hospital in NY stated, as I recall, that they encountered 2 or 3 dural ectasias when they opened me up for the detethering. One was said to be "of significant size" and they were "weeping" CSF. The report stated that the ectasias were "repaired." I've often wondered if this is possibly part of the cause of my continuing "below the waist" pain and weakened, painful legs and feet.
I also want to mention again my swallowing problems. This is a continual problem. Several times a day when I am eating, my food does not "go down." Not every time I eat, but several times a day, each day. I have chronicled and reported this problem to doctors for about five years. I was sent to an ENT who pronounced that my problem is neurological, not structural. I have been told, in the past, that this is a symptom of lower cranial nerve dysfunction.
What happens: I take a bite and swallow it naturally. Most of the time, this event is less severe in that I notice the food going very slowly all the way down my esophagus. I take notice of this, and wait for it to go "down" before taking the next bite. This is slightly painful or uncomfortable. I can wait for 30 minutes or longer for the last bite that I've taken, after I stop eating, to finally go all the way down and my esophagus seem to be clear. I am used to that feeling of food stuck in my esophagus most of the time, but not all, since I've lived with it for so long.
A couple of times a week, this event is much worse. I take a bite, but the food does not go down, it completely stops at the top of my esophagus. I don't notice it at first and I keep taking bite after bite, expecting, as usual, that one bite will push down the previous bite.
The food all then adds up into what I guess is called a bolus. I do NOT gag or choke or regurgitate the bolus. I do not feel any natural reflexes to do anything about it, except to wait while it slowly, painfully, eventually slides down the esophagus. This can take a very long time, like a minute. One time, I nearly passed out from this plug of food, my vision narrowed to where my vision was blacked out, but then it seemed like the food went down and I was okay.
I don't panic about it, but it does seem to block my breathing through my mouth. What is hard for me to understand is, why don't I gag on this? Why aren't I choking?
I know you tested my gag reflex and reported that it is normal. So maybe it's something different that is absent when this happens, but I really do not have any automatic reaction to the plug of food at the top of my esophagus.
This is only one of, and the most severe, the symptoms tied into, possibly, lower cranial nerve dysfunction. I also have problems, such as with taste (one day the food tastes wonderful, the next day, same food, seems tasteless. Food often seems tasteless to me). I also at times have an inordinate amount of saliva and find myself drooling from the sides of my mouth, this has presented itself more noticeably within the last year.
I have had a sleep study, maybe 5 years ago, which stated that I have too many "unexplained arousals" when I sleep. I do know that I wake up many, many times at night, not fully awake, but aware of my surroundings. One time recently, I woke up, looked at the bedside clock, went back to sleep, woke up again, looked at the clock thinking it had been awhile since I'd last looked, and it was still within the same minute, and this happened again, so during one minute I had awakened at least 3 times. I often wake up with my body automatically "gasping" for air, and it seems that I have breathed out but not taken in a breath until my body reacted and gasped for one. This symptom also has been with me for five years or so.
Beyond painful weakness in my extremities (which is always with me), and pain at the back of the head, there is one MAIN symptom which concerns me. Again, I've had this since my injury April 9, 2004. It is:
This occurs several times a day, every day, throughout the day. Many things set it off. Being too hot or flushed. A shocking realization of something new to me. Something makes me really laugh, even just inside. Crying. Tight clothing. Getting over-tired. Doing something that is too much for me. A full bladder or bowel. Many things, but there is always a trigger...
I begin to feel flushed above the site of my injury (C1), my scalp feels prickly, painfully so. My hair stands on end and is painful to the touch. I start to really sweat all over my head, I start to get a headache, I start to feel faint. I become even more painful all over my body, aching especially in the palms of my hands and my fingertips hurt. My feet become very painful. And my blood pressure really goes up. I have checked my BP at these times, just out of curiosity, and found it to be 182/152 and up. (My normal is 120/70 or less).
This is a symptom that keeps me from being in a group or crowd of people. It inhibits my participation in life in many ways. And it has been with me since right after I got hurt.
Thank you for reading this far. To summarize, my concerns are:
1.) Problems with swallowing
Since this seems to be worsening, I am wondering if this is due to present compression of some sort, or just from the damage done six years ago. Will it continue to get worse?
2) The "problems with my blood pressure/painful scalp/feeling faint/headache/diffuse pain in body and hands and feet, etc"..... I wish I had a name for this, for one thing. I'd like to know, if possible, why it occurs and if it is something that will worsen or cause worse results in the future.
3) I wanted to let you know about the dural ectasias that had been found in 2007 when they did the detethering.
I am anxious to hear the results of the latest imaging.