Hello, I am somewhat newly diagnosed and have some questions. I was originally diagnosed back in 2007 but did not give it much thought because at the time my only symptoms were mild headaches. Over the past year, the headaches became worse and I started to have other issues like being stiff all over despite receiving Myofascial Release, I have also developed severe nystagmus in my left eye. To make a long story short, I went to my doc who sent me for an MRI. The MRI revealed that “there is a peg-like configuration of the cerebellar tonsils with 2.5 cm cerebellar tonsillar ectopia and crowding in the posterior fossa.” I’m guessing that the 2.5 is the cerebellum drop which I keep seeing everyone referring to? My doc sent me to a neurologist who sent me for a MRI of the cervical spine. I went this past Friday but have not heard back from the doc yet. I am hoping to hear something tomorrow bc I know he only sees patients in the office on Tuesday’s. That leads me to my next question. I was told that the cervical spine MRI will reveal if there is some sort of spinal fluid leaking or something? Sorry, I can’t remember exactly what the doc said bc I was too busy thinking about the details of the surgery that he had just told me about (which scared the crap out of me!) He led me to believe that if there is a leak, I will need surgery but if there is not a leak, I will not need surgery. Does this sound correct? Like I said, based upon what the doc told me about the recovery, I am not scared out of my mind to have surgery and am doing anything I can to avoid it. I started acupuncture today and am hoping that helps. At this point, I feel like my nystagmus is more of an issue than the headaches, at least those respond to Advil or Tylenol, the nystagmus is making it hard for me to focus on objects.
In any case, I know this post is very long, I apologize, as a newly diagnosed person, I am trying to educate myself as much as possible so I can figure out what to do. Any advice or suggestions would be greatly appreciated. Thank you!
Hey, hope things are goin alright. The MRI and the visual you describe, is the cerebellar tonsils. The 2.5cm measurement is the herniation of the tonsils into the spinal canal. I have a herniation of 1.5cm, into my spinal canal, of course. I have syringomyelia. But not sure how big the syrnix is. And I have hydrocephalus. The valves of my brain are huge. There’s enough room back there in my head where it isn’t clogged.
I can’t bend over at all. Even at the waist. I come up and have to grab something from been so dizzy. I can’t use my hands/arms above my head. It’s like the muscles just exhausted within seconds. Can’t strain. So i don’t pick up anything heavy. (Use your judgement) The back of my head would start hurting with a strange pain. I also deal with optical neuralgia. The pain starts in the back of my head at the base of my skull. It shots laterally across my head, to the back of my eyes. It makes you stop whatever you’re doin, grit your teeth and ball your fist…
I hope some of this helps. You have to remember this though. Surgery is not a for sure fix. Especially if you are goin in for pain. Some didn’t have pain, but came out with it.
Hi, thank you for the information. I am still waiting to hear from the doc as to the results from my spinal MRI. It was last Friday and I called yesterday but of course could not get through to anyone. I left a message but still have not heard back. It is driving me crazy because I would obviously love to know the results. I have my second acupuncture treatment on Monday and am really hoping that will help. I have heard that there is a very good neuro ophthalmologist near me so I may look into that as well since these days my biggest problem seems to be my nystagmus.
It sounds like what he is telling you is basically true. The leaking is what leads up to the syringomyelia, and by leaking your doctor is referring to cerebral spinal fluid. Also, not sure if you are in the US, but if you are, you are entitled to leave with a CD after your MRI’s.
Take these to your doctor so he can read the results himself (make sure they go home with you so they don’t evaporate at the doctor’s office)
The impressions (what the indications of your condition are) of your MRI are sent in typed out format to your doctor. Also, keep all medical records that you obtain, keep a file of all your records.
You must be your the biggest patient advocate you can be to yourself. There is a drought of highly qualified neurosurgeons in this specialty in the US. You will book appts out sometimes months a head. It is humbling and will seem to trivialize your condition at times. Nobody prepared me for this part. Even when I go in there to this day, it is an apathetic climate. Almost as if i am going to the drycleaners or something. No one prepared me for this part. So, go to your appts, ask lots of questions, and make notes and document everything. hope this helps!
Seems like most of your questions have been answered but I didn’t see anything answered about your concern of surgery… I had a 5 mm herniation. I had surgery almost 3 years ago and when I woke up it was like day and night!!! No headache!! I had no clue what it was like to not have a headache!!! After a few weeks I had no numbness on my left side anymore and was walking without my cain the first time in months! The heart palpitations where less too! By no means is it an easy surgery. The first 4-5 weeks are hard as heack! But all in all I wish I had done it sooner! Right before I went into surgery I felt a sense of peace and ease going in. I wasn’t worried or scared at all! I contribute that to the goid Lord being there with me!!!