Hi, I’m looking for information, I’m scheduled for my surgery in October and the surgeon said he won’t remove the tonsils.I was good with that, but I found someone on a website that said not having them removed would mean that the decompression is a failure. ???I’m having this done with full understanding that there is no cure, just looking for relief. How many of you had yours removed?
This is not the best site to answer your questions. My personal, non-medical and non-researched opinion is that just because scientists do not know what your cerebellar tonsils do does not mean that they should be cut out. Look at the appendix - it now has a purpose!
No, I did not have my cerebellar tonsils removed with my decompression surgery. It was never discussed and I did not ask.
When I had my surgery a year ago my doctor strunk my tonsils
I understood that the cerebellar tonsils are part of the cerebellum and in most people these tonsils are curled up in a spiral and sit in the the curve of the skull at the back.
I understood that since the cerebellar tonsils are part of the brain they would not be cut out as they were not diseased ..they were just uncurled and squashed into a place they were not supposed to be .
The "Magnum Foramen Decompression" takes pressure off the tonsils that have slipped out of their curled up position and have slid down through the opening of the bottom of the skull lying on either side of the DURA-covered spinal cord. The dura is a leatherlike protection tube which contains the spinal cord which is surrounded by cerebral spinal fluid (CSF), to keep it moist . The CSF flows only ONE WAY around your brain and spinal cord and it spurts each time your heart beats .
Part of the pain (pre-op) comes from moving your skull back, or up and down (like when you laugh..(THAT IS agony) and when you do that ,the edge of the skull, at the bottom at the back,,presses on the cerebellar tonsils .
Part of the pain( pre-op)/ also comes from the build up of CSF not being able to flow easily and the pressure causes pain and or /numbness sometimes or all the time in neck arms hands nerves . If I lifted my arms above my head I would often faint so I stopped doing that as well.
I was not allowed to do much in the long wait for the Operation . The NS was concerned that the syrinx which I also had , may open too much and make me a tetraplegic!. I was not allowed to do strenuous exercise e.g. jump run or have sex. Laughing was unbearably painful.
The operation took place on the 31st of May2004 and it took over 6 hours . In it the following procedures took place:
I had a laminectomy ,which involved having the bone cut back at the back of the skull, and the neurosurgeon also cut out half the first vertebrae which was pressing into the hanging down tonsils and putting pressure on my ear area as well as my nape of my neck.
I also had a duraplasty, to stop the expansion of the syrinx (hole ) in the C1 area of my spinal cord . The syrinx had been originally caused by pressure from the cerebellar tonsils and the CSF being jammed up in one small space at the back of my neck and severely banged .. I had had a series of neck whip-lash accidents which led to having an MRI which showed the syrinx and the Chiari II.
Having the operation was the best thing I could ever have had done . I do not live with unbearable pain anymore and my pain and numb periods in my arms and hands went away.
I can live a fairly normal life except I must not lift anything heavy and I avoid working an 8 hourday at a computer which involves a lot of neck tension and turning ..An interesting "plus" as well has been the new ability to sing harmony easily without reading any music .. can any neuro-scientists explain that please??.
I wish you the best
madeleine L (from New Zealand) p.s. if you google madeleine lane nz music, you can register and listen free to my original songs!!
gabby jazzypants said:
This is not the best site to answer your questions. My personal, non-medical and non-researched opinion is that just because scientists do not know what your cerebellar tonsils do does not mean that they should be cut out. Look at the appendix - it now has a purpose!
No, I did not have my cerebellar tonsils removed with my decompression surgery. It was never discussed and I did not ask.
I wasn't looking for medical advice, more like trying t get more info.I really appreciate your feed back and understand a little bit more about all this.Thank you for getting back to me.
Madeleine L said:
ThI understood that the cerebellar tonsils are part of the cerebellum and in most people these tonsils are curled up in a spiral and sit in the the curve of the skull at the back.
I understood that since the cerebellar tonsils are part of the brain they would not be cut out as they were not diseased ..they were just uncurled and squashed into a place they were not supposed to be .
The "Magnum Foramen Decompression" takes pressure off the tonsils that have slipped out of their curled up position and have slid down through the opening of the bottom of the skull lying on either side of the DURA-covered spinal cord. The dura is a leatherlike protection tube which contains the spinal cord which is surrounded by cerebral spinal fluid (CSF), to keep it moist . The CSF flows only ONE WAY around your brain and spinal cord and it spurts each time your heart beats .
Part of the pain (pre-op) comes from moving your skull back, or up and down (like when you laugh..(THAT IS agony) and when you do that ,the edge of the skull, at the bottom at the back,,presses on the cerebellar tonsils .
Part of the pain( pre-op)/ also comes from the build up of CSF not being able to flow easily and the pressure causes pain and or /numbness sometimes or all the time in neck arms hands nerves . If I lifted my arms above my head I would often faint so I stopped doing that as well.
I was not allowed to do much in the long wait for the Operation . The NS was concerned that the syrinx which I also had , may open too much and make me a tetraplegic!. I was not allowed to do strenuous exercise e.g. jump run or have sex. Laughing was unbearably painful.
The operation took place on the 31st of May2004 and it took over 6 hours . In it the following procedures took place:
I had a laminectomy ,which involved having the bone cut back at the back of the skull, and the neurosurgeon also cut out half the first vertebrae which was pressing into the hanging down tonsils and putting pressure on my ear area as well as my nape of my neck.
I also had a duraplasty, to stop the expansion of the syrinx (hole ) in the C1 area of my spinal cord . The syrinx had been originally caused by pressure from the cerebellar tonsils and the CSF being jammed up in one small space at the back of my neck and severely banged .. I had had a series of neck whip-lash accidents which led to having an MRI which showed the syrinx and the Chiari II.
Having the operation was the best thing I could ever have had done . I do not live with unbearable pain anymore and my pain and numb periods in my arms and hands went away.
I can live a fairly normal life except I must not lift anything heavy and I avoid working an 8 hourday at a computer which involves a lot of neck tension and turning ..An interesting "plus" as well has been the new ability to sing harmony easily without reading any music .. can any neuro-scientists explain that please??.
I wish you the best
madeleine L (from New Zealand) p.s. if you google madeleine lane nz music, you can register and listen free to my original songs!!
Thank you, i think by far that was the best explanation I've gotten.i know that this is not a medical site, however by reading everyones post it has helped me understand more about what im going through and helps understand what the heck is happening to my head.
I only had decompression and was doing great for about 3 1/2 years then all of the sudden my symptoms are worse than before my decompression and now I have too much "artifacts " that they can’t see good on the Mri to see what’s going on. There are some new articles I was reading about them opening up and cauterizing but I would want many opinions. I would just like to find a doctor in Texas who actually works with chiari parients after surgery! Good luck to you.
The tonsils should be above the atlas bone thus eliminating the constriction and are usually cauterized if they are low.This is the neuros descision when operating.
So a couple of days ago I decided to write my experience of surgery while I still remembered it. SO first thing, the night before we drove up to a hotel in durham and it was really nice. My soccer coach aka my other dad paid for it for us. My aunt surprised me there and we ate there for dinner and they had really good pasta! Anyways the next morning I went to the hospital for as pre op, and I was scared. The lady checked my blood pressure and my temperature and and everything went good until it started getting closer to time. She then had to stick me with an IV and the first time I ‘moved’ and so she had to redo it. My aunt and mom had to hold me down. After she did it I met my anesthesiologist and she was really nice and made me feel relieved because I asked her 1000000 questions about if i would die or not. Then she said she would take amazing care of me and do her best but I could die like in any case but I still trusted her. My surgeon also came in and let me know how much hair he was going to have to shave and how long the cut would be and all those details. After they left the nurse put stuff in my IV to calm me down and the last thing I remember is being rolled into a room with a bunch of doctors I have not met before. I asked if I was going to be okay (Of course I was under medication about this time so I was being loopy) and then it went black. The next thing I remember is being in a place where I was before I had the surgery and I was completely out of it. My mom said every nurse that came to me I would grab her hand and ask if she could put a pillow under my head cause I was so uncomfortable but they all said no because that could mess things up. When they said “no” I would politely say “okay” in a baby voice and would repeat to the next. Then I blacked out again. Sooner I woke up, and I was up. My mom and aunt were there but then my aunt had to leave. I was in excruciating pain. At that time I was okay with dying. I never felt like that before until then. I was in so much pain if dying was an option I would of definitely took it. I couldn't move, and EVERYTHING from my neck up was throbbing. Also from a tube being in my throat to control my breathing, my throat was killing me (it stretched that ball hanging in the back of my throat which from that I can now touch with my tongue) . All the nurses I had were great. They had to come in every hour or so and check everything on me. And that actually opened my eyes to maybe become that when I’m older, but anyways I asked my nurse for something to help my throat pain once and so she gave me a popsicle….. WORST MISTAKE EVER. After I ate it it did not even help and I threw up for an hour. Now Imagine this, Having the back of your neck split open and then vomiting. I dont have the words to describe how horrible that was, once again I wanted to die. I couldn't eat anything the 4 days i was there either. The pain medicine I was on still wasn't enough. I woke up every hour or so at night in pain. I felt disgusting because I couldn't shower. After the surgery and I returned home I had to be homebound from school for a month and I basically was depressed. Yeah I had friends who texted me and came to see me every now and then but me not seeing them everyday and all that definitely impacted my friendship with them. My two best friends I had at the time aren’t even my friends anymore due to drifting. I definitely made some new friends out of it but it wasn’t worth it. Overall my experience with this surgery sucks. I am not the same person I was before it but I definitely think I am a much stronger person and I believe no matter how horrible things get it will always get better. 5 days ago made 6 months since I had this life changing event and I honestly am so proud. My hair is growing back, my scar is healing, my headaches are definitely reduced. If you asked me three months ago if I recommend it, I would of told you heck no. Now, I would say yes. It definitely decreased my pain levels (It doesn't take all the pain away, I still have some every now and then) and gave me a new perspective on things. I definitely think if you're going to have it you should see D. Fuchs at Duke, (if you’re under 18 like me). This is my story and I really hope this helps someone.