I am new to this site. I can not get a straight answer from my neurologist, so I'm wondering if anyone can help me. I had my Chiari decompression surgery one year ago. My last MRI was in July and my neurologist said it showed that I have very little room for my brain, but that my continuing symptoms are not related to that. I have a second opinion scheduled in April, but meanwhile I cannot even work because of the memory problems, daily headaches, stabbing pains in my head, and trigeminal neuralgia pain. I am still getting pulsating sounds in my head, but not nearly as often. I guess my question is, do all MRI's show very little room for the brain after surgery? Or should there be more room after the surgery? I thought that was the purpose of the surgery. If anyone knows about this and could help me understand it a bit better, I would really appreciate it.
When part of the skull is removed, that allows more space for the cerebellum. If your MRI is showing it is still crowded, then something isn't right. Talk to the Neurosurgeon who actually did the surgery. Look at your MRI films. If you are having symptoms again, and your neurologist is blowing you off, see a different doctor. Do some research and bring with you to your appointment so you discuss with doctor.
I would try and get a 2nd opinion from another neurologist as soon as possible too. He might of just been speaking matter of factly like my neurosurgeon does (not sure how well you know your neurologist). Even with the 2 decompressions, there might not still be a lot of room in there--even though there have been more than 2 decompressions.
I have had only one decompression, so my hats off to you for undergoing 2. I am pretty sure I went through some PTSD with my decompression and I say that without any sarcasm. Nothing could have prepared me for that. I will honestly go through more symptoms before going through another surgery.
Also, I know what you mean about memory problems, headaches, etc. Nobody understands the zombie like stupor that can not be escaped.
Another thought: (I spend a lot of time researching this when I'm thinking clearly). Since the cerebellum has been progressively being squished, it stands to reason that some areas of functioning were damaged. Thus, even after having surgery and giving the brain it more space, those areas that were damaged may not get the functioning back.
Zombie Stupor!! That should be included in the list of symptoms everywhere!! It is so hard to describe symptoms to others who haven't gone through this. My head feels like a big balloon- heavy and achy- like I have a constant hangover, without the alcohol. The Pamelor I'm on just contributes to this.
I would try and get a 2nd opinion from another neurologist as soon as possible too. He might of just been speaking matter of factly like my neurosurgeon does (not sure how well you know your neurologist). Even with the 2 decompressions, there might not still be a lot of room in there--even though there have been more than 2 decompressions.
I have had only one decompression, so my hats off to you for undergoing 2. I am pretty sure I went through some PTSD with my decompression and I say that without any sarcasm. Nothing could have prepared me for that. I will honestly go through more symptoms before going through another surgery.
Also, I know what you mean about memory problems, headaches, etc. Nobody understands the zombie like stupor that can not be escaped.
I'm getting to the point where I don't believe anything my Neurologist says. I read up on everything so I know what's happening and she just seems to be pretty slow!!
The Zombie Stupor is my biggest symptom. I always feel like I have a Zombie head. Then the dizziness/imbalance is next. So glad I finally got an answer and a new surgeon. My first surgeon seemed SO reluctant to do a surgery and didn't think my symptoms were serious enough and that they may have been due to some other disease!!
catlover72 said:
I would try and get a 2nd opinion from another neurologist as soon as possible too. He might of just been speaking matter of factly like my neurosurgeon does (not sure how well you know your neurologist). Even with the 2 decompressions, there might not still be a lot of room in there--even though there have been more than 2 decompressions.
I have had only one decompression, so my hats off to you for undergoing 2. I am pretty sure I went through some PTSD with my decompression and I say that without any sarcasm. Nothing could have prepared me for that. I will honestly go through more symptoms before going through another surgery.
Also, I know what you mean about memory problems, headaches, etc. Nobody understands the zombie like stupor that can not be escaped.
Also, I consume extremely unhealthy amounts of caffeine to stay up and even appear functional. hen I start lashing out at my family like a time bomb. Days where I don't feel like getting all caffeinated up, I can't even talk, ( I slur anyways but without caffeine I could pass as a drunk), and my functioning is subpar. It's a viscious cycle everyday. I wake up and consume extreme amounts of caffeine just to get up and get my daughter up and ready for school. My husband does help out a lot, but he works. I usually grab naps during the day. Then, when she comes home, it's huge amounts of caffeine so I can provide some kind of meal, dishes and help her with homework. Without the caffeine abuse, I would have to be in bed literally all day. The caffeine also exacerbates the tingling and numbness of the Chiari/Syringo..which ever one is causing the all over numbness and prickliness. It does the headaches no good either and I believe constricts the vessels even more.