The symptoms that come with lower brainstem compression, aka Collet-Sicard Syndrome, are trouble with swallowing; sore throat and hoarseness; trouble with speaking certain word-sounds; abscence of gag reflex; drooling; changes in the soft palette.
Collet-Sicard can be caused by multiple myeloma, prostate cancer and cervical cancer and other diseases. It is considered rare. And two articles have been written, one in the US and one in China, about two different cases where the Jefferson Fracture evolved into Collet-Sicard. Both articles stated that "their" case was the only one reported in medical literature.
C1 (atlas) fractures are rare, they represent only 2% of spinal injuries. Rupture of ligaments is commonly seen together with C1 fractures.
There is also literature that explains that Collet-Sicard Syndrome can be linked to occipital fractures (base of the skull)...cranial settling and basilar invagination.
So, what are my symptoms that lead me to believe I have this rare syndrome?
Five years ago, I suffered a four-place atlas fracture, along with dislocation of the occipital dislocation (not a fracture, but certainly a movement of bone that can affect compression upon the brainstem).
I was diagnosed early on with "glossopharyngeal damage"....the glossopharyngeal nerve is one of the 4 cranial nerves affect in Collet-Sicard. My physiatrist recorded this in my chart after I complained of a constant sore throat, and upon examination, he found my right soft-palette to be drooping more than the left. (He mentioned that and I asked, "What does that mean?" And, he replied, "That you really hurt your right side.")
I also have my notes from my six-months of speech therapy post-injury, and find the drawings done by my speech therapist to explain the vagus nerve and the glossopharyngeal nerve, both nerves part of the ones affected in CSS.
I have reported "sore throat" in my symptom lists which I have given to doctors for the last five years, each time. I also easily experience hoarseness if I am in a "talking" situation, either on the phone or with a friend. My throat gets very painful and my voice gets gravelly. This is one of the reasons I do not like to talk on the phone.
Swallowing has been a long-time complaint of mine. When I swallow food, it enters my throat but stays at the top. Sometimes, it will regurgitate back into my mouth, but not often has that happened. The food just stays there until I eat bites of other food, which will move the first bite down, but then the latest bite again stays at the top of the esophagus. I envision that my swallowing muscles just are not working.
Sometimes it takes up to 30 minutes for the "last bite" to move down the esophagus, the food moves that slow. Today, I picked one small strawberry, ate it and it stuck in my throat for at least ten minutes.
I do not choke or gag at all when the food is stuck. I'd think I would. I have always had a very hyperactive gag reflex and would often have trouble swallowing one medium-sized pill. Now, I can swallow three or more pills at once.
I asked my local doctor to test my gag reflex last week. He did so, and it was obvious I have NO gag reflex. He pushed back his chair and remarked, "No gag reflex! That's brainstem stuff!" I live in a very small town and doctors here don't play games, they just speak plain language and don't try to hide things from you. It's refreshing.
Drooling. Yes, I do. I didn't make this connection until recently...but I remember when I was at my son's wedding last September and he motioned to me that I had some collection of "stuff" at the corners of my mouth. I mentioned it my husband and he said I often do. Now, I notice that I have to intentionally swallow saliva, as it seems that autonomic function is not working. If I am talking to someone, I really have to stop and swallow, I build up a lot of saliva in my mouth.
I just read something on the web I'd like to investigate further, it mentioned something with CSS about the sternum. That reminds me easily of a symptom I've also reported for five years, a feeling of thumping in the middle of the chest that seems to stop my breathing. I was sent to a cardiologist and wore a Holter monitor and reported many episodes, but none of them showed up on the monitor as a heart event and, except for mild mitral valve prolapse and stenosis, I have a healthy heart.
To me, during these events, it's felt like my diaphragm is stuck. I find it interesting to hear what people think is happening in their bodies, spoken in non-medical terms and with little knowledge of even the possibility of what they are describing as existing. As far as I know, only TV's Dr. House is concerned with the totality of symptoms that a patient might list. All the doctors I've visited, even the well-loved and great ones, say, "Tell my your top four complaints." I don't understand this technique at all. It might be successful in helping the doctor move patients in and out of the door, but the top four complaints could be symptoms of thousands of conditions.
Perhaps that is why we find Dr. House so intriguing. He is a brilliant diagnostician who plies his trade not because he loves patients and cares, but because it's all a big puzzle to him. Most patients I know wouldn't care if a doctor cares or not, if they just tend to the business of diagnosing, the patients would be happy indeed!
No gag reflex; drooping of right soft palette; chronic sore throat; hoarseness; drooling; difficulty with speaking certain words and sounds; symptoms in the sternum area.....
and the REASON for it all, the 4 place Jefferson Fracture, the atlanto-occipital dislocation all evolving into "severe functional cranial settling" all adds up in a clinical fashion to convince me that I am one of those very rare ones who has had her JF result in Collet-Sicard Syndrome.
continued on the next post.... "Why do I feel the need to "get" this diagnosis, and what can be done for those with this Collet-Sicard?"