Out of curiosity, what is the function of the cerebellar tonsils? I can't find their exact function. I can find the cerebellum's function of controlling balance, spacial & fine motor functions. Are the cerebellar tonsils related to the functions of the cerebellum only, or do they have their own specific functions? Just wondering what these things that are causing all of these problems with me actually do in my brain!
Yeah good question I have wondered that also, I was floored out of my gourd when I saw a you tube video by a young girl ( around 17) It's her story, and she said they ended up cutting off part of her a portion of her cerebellar tonsils, then she showed a statistic that said only 30% of doctors would do that because their goal is to keep brain matter intact. Then I saw only 1 other place ( granted I have only been researching and in the Chiari world 3 weeks), it was a description of the surgical procedure and outlined for doctors and it said, if needed cautorize or shorten the cerebellar tonsils. I am like ACK !!!!!!! is this normal? is this protical? is this OK? so excellant question. can't wait for shane and selma and dawn to fill us in, they always seem to know stuff so easy.
I really don't know.... Yes I have heard of them shortening them and if I am not mistaken Selma said something about them cautorizing hers. I am sure they will let us all know if there is a specific function or not.
HI all....I am not aware there is a function per se ....the tonsils are part of the cerebellum that is forced down and out of it's intended location.
and yes, mine was cortorized to help shrink them......the tonsil on my left was longer and severely compressed.....neway that is what I remember the dr saying while I was under the influence.....at my next visit if this question is still unanswered, I will ask my dr directly.
The cerebellar tonsil (amygdaline nucleus) is a rounded mass, situated in the hemispheres of the cerebellum.
Chiari malformation is a congenital anomaly of the brain in which the cerebellar tonsils are elongated and pushed down through the opening of the base of the skull (see foramen magnum), blocking the flow of cerebrospinal fluid (CSF).
Does this help at all...to me they r just part of our cerebellum.....and get elongated and long when the space is too small.....
My sister had the surgery in 2000 and they cautorized her cerebellar tonsils, that is honestly part of what frightens me about my diagnosis. Immediately after her surgery, she developed severe phobias and was suicidal, none of which had been issues prior to the surgery, I always wondered about the cauterizing and whether that was an okay thing or not, clearly there was some kind of problem with what happened to her brain during the process, it took about a year before her memory was close to normal again and before she started functioning normally.
The Cerbellar Tonsils (amygdaline nucleus) primarilly deal with storing and forming emotional responses. And have a connection to the sense of smell.
This is why smell is such a strong reminder of the past - like when you smell an apple pie and suddenly remember Grandma.
Dpulum, normally cutting part of the tonsil isn't dangerous, but there are correlations between amygdaline nucleus and neuropsychological activity. Does your sister having regular check-ups with her neurologist and/or a psychiatrist?
I noticed that Selma has helped a lot of people with this Chiari thing. Maybe there is some help for my mom too. My mom had a menegeoma brain tumor removed about 10 years ago. She was better after the tumor was removed. She could function for longer periods of time without having to rest. Over the past 10 years she has been able to enjoy life with her family and grandkids for about 4 or 5 days and then she would have to take a few days to recover. The downtime was caused by the indentations in her skull where the bone flap was replaced would start to sink in. This would cause severe pressure and pain in her head. She has also described it as numbness or like when your fingers are frozen and then start to thaw, that's the feeling in her head. She decided that she could live with this because at least she had 4 or 5 good days, then she would have to sleep for a couple of days while the indentations would rise again and then she could go through the cycle again. Lately, it has gotten to the point when the indentations will not rise again. She has also started to lose the vision in her right eye. She describes it as foggy. The neurosugeon suggested that she go to a pain clinic and have an anesethesologist inject a nerve block around the indentations. Still waiting for them to call with an appt. He also suggested that she see an eye doctor. I have never heard of Chiari until I got on this site but it sounds similiar to what she is going through. Any thougths?
HI Laura...ur mom is very lucky to have such a thoughtful daughter to advocate for her...
It sounds like maybe the settling of the area that was operated on may have some movement....I also wonder if she has developed inter-cranial hypertension....too much CSF...that would explain the indentations expanding.....and now that it is not expanding, I wonder if she now has too little CSF??This would explain the eye issues too!
Have they done a brain MRI recently?.....it is not uncommon for chiarians to develop the CSF issues after surgery and I wonder if it is the same for a tumor.
Have her push for a MRI if she has not had one recently to see what is going on. I agree some of her issues do sound very similar to chiari, but get the MRI's to see what is going on.
I hope this is helpful
Please keep us posted on ur non's progress : )
The first time I heard about "shrinking" the cerebellar tonsils, I thought it had to be an error in reporting of a story. But the more research I do, the more I see references to "shrinking" the tonsils. Does "shrinking" mean "cauterizing"? And some doctors have actually cut them off? I'm so confused.
Well, to be quite honest, when I was diagnosed, and my report said my tonsils descended 11mm into my spinal cord, and so I asked the doctor if they couldn't remove my tonsils. I didn't know there was another set of tonsils in my head!!! I'm sure the Dr. had a giggle over it with his colleagues later :)
Thank you for your quick response, Selma. My mom received the results of her MRI/MRA scan two weeks ago. It showed no changes. The neurosurgeon said everything looks normal. The brain tumor has not returned. She also has an anyersm behind her right ear. It has not grown since the last MRI/MRA scan and does not require surgery. The neurosurgeon said that he could replace the bone flap and add a filler so that the indentations would not sink in and press on a nerve but it was very risky because of her medical history of stroke and the anyersm. He said that should be the last resort. We are still waiting on a call from the pain clinic to schedule the appt for the nerve block. The nerve block should take away the pain which is great but I was concerned that it would only mask the problem. He said that because the MRI/MRA was fine that there is nothing to worry about. As I was reading about Chiari I noticed that sometimes it can be related to a tethered cord. She does have a sacral dimple. The doctors are not aware of this. After reading all about this I thought that may be something that they need to know. My son was born with a tethered cord and had a sacral dimple. He went the the surgery to release the cord. Hopefully he will not have any problems in the future. He has also had a stroke. All of it sounds related. Have you ever heard of a nerve block as a form of treatment?
I'm so sorry to hear about the struggle your mom is having...the cycle of 5 days of energy and then a few days of bed rest, sound so familiar to me.
I just wanted to add that I too have a sacral dimple as well as my youngest son. I was told that both of ours are a normal variant...things they do look for are patches of hair, birthmarks near it or if there is a pinhole or if the dimple isn't completely closed over. I'm sure you know all this already b/c of you son...but just in case!
That is too weird that your son had TC and your mom has the issues that she does. I'm sure Selma can tell you if this kind of thing is hereditary but to me that is a big coincidence! I think that gives you more than enough reasons to bring that up to your mother's Dr.
It has been mentioned to me about getting a nerve block in my spine to help with the pain. However, after I looked into it and realized that they stick a needle in your spine and release some anesthetic to numb the nerves..it had me a little scared. I have had 3 C-sections and so have had 3 spinal blocks already and I did not enjoy it. Plus, I am concerned that having those spinal taps may have increased my Chiari issues. So my advice would be to make sure there is nothing else going on b4 she takes that route.
I really wish your mom good luck on finding some answers!! She is extremely lucky to have such a wonderful daughter like yourself.
I had my second decompression in dec 2009 and during this procedure the dr (same one who did first in 2002) shrunk my descending tonsils. Was concerned when I woke up from surgery unable to use left side of body and severe pain difficulty in walking and slurred speech. Was told would get better in 10days. Well 9mos later and still have walking problems after pain mgment and physical therapy, pyhco therapy, pain meds, mri's (3), EMT dopplers and still no dx! I need help! Can't work!single Mom of five! 28yrs of chiari pain and now this! Anyone heard of this side effect! Nayemack
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such as attention and language, and probably in some emotional functions such as regulating fear and pleasure responses, but it is its function in movement that is most clearly understood. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity. Because of this fine-tuning function, damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning.
With your definition of the cerebellum in mind... do the tonsils actually have a hand in these functions? Or are they just famous by association?
I asked my NS yesterday about the purpose of the tonsils, and he said something like - they do not have a purpose that we know of (not direct quote, of course, courtesy of my memory). In my scheduled surgery, having them cauterized, or shrunk, is part of the plan... Kinda creeps me out - but the whole Chiari thing is rather crazy as it is! It makes me think of using a cattle prod to get those cattle back into the barn where they belong! (odd, I know... can't help it.)
I love all the references to Chiari memory! I always just thought that maybe I had ADD or something because my memory is horrible!!! And just getting worse!!! I love how everyone here just laughs it off!!!
I was in a car accident in September. I recently was sent for an MRI of the cervical spine w/out contrast.
This is what the report said, but my chiropractor wants me to see my MD because he really didnt understand it enough to explain it to me, I am flipping out of my mind..
This is what it said.
"There is an approximately 5 mm downward herniation of the cerebellar tonsil in themidline with breaking of the cerebellar tonsil. This is within normal limits, however, the breaking of the cerebellar tonsil is slightly worrisome. The best visualized in sagital t1-weighted imaging sequence."
I have to wait til tomorrow to get answers and I just cant wait...Im worried
I wish I knew what ur radiologist meant by the "breaking of the cerebellar tonsil" it is hard to know since this is their opinion and their verbiage...there is not set way for them to make remarks on the reports...most NS do not read the report and make their own minds up after viewing the MRI itself....
Ur downward displacement of ur cerebral tonsils may be the result of the MVA so it is possible it is an acquired...and not congenital condition....ur dr will be able to give u more info 2morrow, I know u can not wait...but it is best to try to relax and see what ur dr thinks is going on.
When i saw my NS last month, he described the tonsills like the "appendix of the brain" it had a function hundreds of years ago when we were winging on trees, living in caved andkilling our own foods. .. i hope this description helps some of you who are freaked about the cauterizing of the tonsills.. cause his explination sure set my mind at ease with the procedure
Wow. So I am just reading on this now.. and well I would like to share my symptoms to see what all of you think. I am 42 yrs old and as far as I can remember things just never were right with me. It’s always something.. but I never get a diagnose when I go in. Lately it has gotten worse and I start to cry trying to deal with all of it. Where to start.. well over the last month I started getting pain in my ears and in my teeth. The teeth in question have crowns. I really don’t remember which started first or if it was all the same time. At the same time I was having this coming and going nauseous feeling. I was told it was Vertigo.. It’s not a stomach upset feeling .. Its more related to movement or just turning of my head to fast or too far. I now turn my whole body to back out of the drive way. Then it turned to a more constant pain and spurts of relief. Now the nausea feelings are accompanied with vision disturbance. My right eye is twitching like mad I mean 2x every hour. This was for a week and then on Sunday of last week I woke up with the worse pain in my head ever. It wasn’t like a headache.. just a severe pain and I wasn’t sensitive to light or sound so this rules out a migraine.
Then on Tues I started having pain in my right calf. Wednesday I started feeling a tingling in arms and thigh areas. My leg hurts worse if I bend it. My ears are in severe pain that radiated to my teeth.
I had a PE (blood clot in the lung) in 2004. So when I started getting a stiff back that was the line. I went to ER last night they concentrated on the leg/ultrasound and lung/ct scan but they didn’t not feel there like it was necessary test the ears. So here I am still in pain and no answers..
In addition I have started snoring in the past 6 months real bad ..
I see an ENT and he was talking about removing my tonsils because I have tonsils stones bad. AND then he was talking about removing a portion of my soft pallet because I have a narrow passage. This was in hopes to improve on the snoring and breathing related to sleep apnea.. again I just sat back I didn’t want to jump into it.. so I have not had the surgery.. are the cerebella tonsil’s
Added to this are other problems I have had over the years I just try to ignore:
• I have poor leg circulation.. they fall asleep a lot. And if I am on a treadmill or exercise bike after the first 10 mins my feet are asleep LOL I am weird told you..
• The past I have for years felt like someone just moved my hair or something crawled on my head..
• Always feel a throbbing behind my ears like I felt the blood pulsing though my artery
• Memory loss wow real bad
• Diagnosed with sleep apnea in 2008 (never got the machine)
• Will frequently have no depth perceptions of objects/ scenery
• Frequent bathroom trips.. and actually wet the bed 4x in the past 6 mths- the first 2x I woke up—but this is scary
• I also have these breathing fits where I cough and cough gagging for air and then cough up this big sac of phlegm.
So what do you think.. should I be tested for this Chiari Malformation
First, the cerebral tonsils that r low lying in a chiari malformation patient is not the same and the ones u have stones in...we have 2 sets of tonsils.One in the skull and the other in the throat.
May I ask did u ever have an injury to ur back or neck..whip lash?...something along those lines?
There r sooooooo many conditions that have the same symptoms but r so different in the way they r treated and can be diff to dx .
To dx chiari u would need a brain MRI and a cervical spine MRI w/wo contrast.ASK for copies of the MRI's and the reports...this is one way to rule this out. Also look to family history...of HA's etc...
Interesting topic! Had not seen this post before. My NS told me that he believes when the tonsils have herniated that they are damaged and that chances are they are not functioning and it is being compensated for in another area of the cerebellum. They brain is such a complex thing and they still have so much to learn! I can say that when the spinal fluid drilled a hole in my cerebellum it caused my left side to lose coordination, I could not touch my nose when asked in the ER before the emergency surgery. I also lost the ability to see correctly, I could not figure out walls from floors from ceiling even though I knew I was in a bed I still could not get my brain to understand what my eyes were seeing. I could not move my head without a feeling of being catapulted, not vertigo though they told me, it was like I was moving not the room was spinning! Strangest thing and worst thing! It was a horrible feeling, very terrifying. I did notice a hard time speaking and still seem to stumble and stutter a bit in recovery. I am getting my balance back but for a bit it was quite tricky. The good news about the cerebellum is that another area will compensate and you will be able to retrain the things that the damaged area lost! I see improvement daily. There are lots of guesses about emotion things too in this area but even though I had problems with emotions (and still am) I know with these surgeries you can be stressed anyway. I had SEVERE nausea when I moved too and I know with the nausea that is why so many people puke after surgery, it is just that this area can't be messed with it seems without causing nausea. I have NEVER had such instant puking, if I moved half an inch I puked, which was why I went by ambulance! I could not move or so many neurological thins were going crazy. It was the cerebellum damaged so I can say pretty confidently that these are things controlled by that area. So many different things to so many different people!
It's very hard to pin down exact functions to specific parts of the brain, for example, because we don't know how different areas interact etc.
Often the brain compensates for any parts that aren't working (there have been some amazing cases of this happening in extremely damaged brains) so I imagine this would be the case for if they are removed completely.
My NS just kept repeating that people didn't know what vomiting really was until they had had some sort of surgical activity or problem in this particular area of the brain because its the balance bit.
I have a favourite quote from a greys anatomy episode that I heard after my diagnosis that talks about the mystery that is the brain.
"The brain is the human body's most mysterious organ. It learns. It changes. It adapts. It tells us what we see, what we hear. It lets us feel love. I think it holds our soul. And no matter how much research we do, no one can really say how all that delicate grey matter inside our skull works. And, when it's hurt, when the human brain is traumatized, well, that's when it gets even more mysterious."
That is pretty much what my NS said, the TONSILS are probably not working because they are damaged, that is why he feels it is safe to shrink them back, he does not cut them. But the Cerebellum is in control of lots of things :) My bovine patch stuck to the cerebellum so that was one area of damage for me and then the spinal fluid did damage when it put some kind of hole/holes into it. I am not overly clear, they just told me it did damage, it was a very crazy time! I don't think I would want mine cut off like some NS's still do but he was pretty certain I thought that once the brain is being squeezed in the tonsils that it will compensate else where!
Im actually researching about chiari and loss of smell. My daughter has been having terrible headaches for 4 years. She was recently diagnosed with chiari. She lost her sense of smell about 2 years ago. I wondered if it had to do with her chiari. She has a 7mm herination. Her symptoms are headaches, nausea, vomiting, loss of smell, memory loss, leg cramps, fatigue and breathing problems. Maybe the sense of smell loss and the bad memory ARE in fact because of the chiari.
Chiari can be the cause of many issues we tend to deal with Breathing, cognitive, headaches, vertigo,all the things u mentioned and then some.
Loss of smell I am sure is not far off the mark, as the symptoms r a result of our brain stems and nerves being compressed.
This can cause nething....
@Mikevdh- Side effects that can occur post op all depend on the individual...we all do not have the same experience....and not all Drs perform the surgery the same...removing the tonsils is not something done too much nemore....they make room for the CSF to flow and leave the tonsils where they are.Surgery is not a cure or a fix, it is to slow progression and restore CSF flow.
I'm so glad I found this! No one knows how I feel or can even begin to understand everything I've gone through. I just had my 3rd shunt put in(I was diagnosed with Pseudo Tumor Cerebri/IH in 2003). Then 2 1/2 years ago I had a chiari decompression. Now they think I need another decompression but this time my dr says he might need to remove the tonsils. I'm a little worried about that as I think that everything in our brain is important & essential not like an appendix!
Has anyone heard of this or gone through it?
I'm going through wicked dizziness right now--my dr hopes it's just me adjusting to my shunt but it feels just like it did before my last chiari surgery (dizziness went away after surgery). After 5 surgeries in my brain I'm experiencing big time memory loss!
I just had a NS (a chiari specialist - as far as I can tell) say that depending on the amount of space he's able to create with the laminectomy and duraplasty, he may "shrink" my tonsils. Why do you say that removing the tonsils is an outdated procedure? It really creeps me out to think about them shrinking or removing part of my brain, but I haven't been able to find much conclusive research on it. And by "much" I really mean "any". :(
My NS that I really feel is very smart and wonderful feels that they are not functioning once they are crammed into that space and that shrinking them does not do any damage. He feels they are not functioning so it will not change anything. I did damage to another area of my cerebellum with a weird fluid flow because my patch was stuck to my cerebellum and I can tell you that was damage... I had so many neurological things going wrong, I can tell you that you don't want to damage the rest of the cerebellum!
I know this is an old topic, but I just wanted to say that at my consultation with Dr. Bolognese at TCI, he said he would cauterize my tonsils and that they have no function whatsoever. If that's true, than cauterizing them probably gives a much better chance of never having them droop down again later in life.
That makes sense to me. Thanks. Creepy though. It's hard to take all of this in. I've talked to four NSs, but only one of whom was a chiari specialist. The first three all said they wouldn't remove or shrink the tonsils, but the specialist, who seemed really competent, said that he likely would, though it would depend on how things looked when he got in there and after the other parts of the surgery.
When having this surgery a few yrs back it was more common for the tonsils to be removed completely...in more recent yrs, they have been leaving them if there is room, or cauterizing them...this is all to help create as much room as possible to allow CSF flow.....
In the case the tonsils r crammed , like zygy2 mentioned, they may choose to remove them...but it is not as routine as it once was....that is y I said it was an old way of doing it....
With NS's u deff want one that is a true chiari specialist...see a few and compare....do not rush into surgery as it is not a cure or a fix...just a means to restore CSF flow and slow progression.
my son had an mri and they said his cerebellar tonsils sat 7mmbelow what they should. We are in the process of getting an appoiontment with the neurosurgeon to find out more information. He is 4 years old, from what i have seen or heard this is usually diagnosed as an adult possibly because the adult is more aware of what is happening. Im wondering is 7mm really low or is it just not normal still confused and would like to see dr asap but was told it may be a month.
On the topic of the size herniation and if it could be symptomatic u can get many different answers in fact as many answers as Drs u ask....they do not all tend to agree, especially if they r not true chiari specialists...many use 5mm herniation as criteria to dx chiari...but chiari is the malformation of the skull causing there to be a smaller area, the herniation is a result of the smaller space.The length of the herniation also is not really the issue, but if there is a CSF obstruction, overcrowding, and what r the symptoms...
With a dx of chiari there r related issues we should all be checked for, and with children even more so with sleep apnea....in addition to sleep apnea tethered cord, disk issues, IH, PTC, ehlers-danlos,levels of vitamins and minerals....
make sure u see several NS's and that they r true chiari specialists.
I have Chiari and 2 syrinxs in the thoracic spine. My nl and ns said we'll try these meds and hopefully deal with the migraines and their ignoring everything else. Everyone in a support group i belong to keeps saying 1 syrinx is call for decompression and here i have 2?!?! I said screw it and made apt with the Mayo hospitals and clinics and hopefully do not get head screwed.
It sounds like u do not have a chiari specialist and , u r right, surgery is done to help prevent the formation of a syrinx, and the decompression surgery is to
help the syrinx shrink, and slow the progression.
U deff need a true chiari specialist...u do not want just a location with a big name, look for the NS with a name for chiari.
We do have a list of the members drs - it is not a referral but a means for u to use to research drs...they all may not be true specialists but have successfully treated a member of this forum.
Scroll to the bottom of this page to locate the link of the Health pages for the list as well as other info and tips.
I am just beginning. To learn about this chiari business since a recent mri. Selma you often seem to suggest the symptoms are the key factor in deciding what course to take and I had to ask you, what if you really have no symptoms? I woke with an unbelievable headache last December that pretty much went away after a few hours and then a few months later I was suffering with a stiff neck and nerve pain in my left arm so I saw my doc who was certain I had another herniated disk so he had the mri. After seeing him I switched pillows and have had no more neck,arm pain for 2 months. They discovered the chiari and are saying I need the surgery to prevent any damage to spinal cord and scaring the heck out of me, my question is if im ok now why should I takes chance of damaging the cerebellum?? I'm a musician and can't afford fine motor skills damage! Thank you so much..all of you I had no where to go for answers God bless all of you and I pray your pain will be relieved. I have three herniated disk in lower back and know how pain can steal your life.
As long as u can manage and ur chiari is not affecting ur overall health u may not be considered a surgical candidate....and u should be checked by a true chiari specialist.
There are related conditions to chiari u should have ruled out , like a syrinx, sleep apnea, tethered cord, IPC, ehlers-danlos....
And know that chiari symptoms do cycle, and those with chiari many times r not aware of some symptoms as we consider them "normal" everyday issues or feelings since we have always had them...
Research chiari Drs, and get a full check up and mayb all u need to do is track ur symptoms for now...and avoid some things that may trigger them.
Not everyone with chiari needs surgery, but I do feel u should be seen by a true chiari specialist not just a NS to find out.
May I ask what type of instrument do u play? I use to play violin , guitar, and bells, piano....I found I had a hard time with the violin as I got to 4th position and never knew y...now with my EDS dx and now that I see how my finger joints sublex I understand how my fingering was off....there r splints for that, and had I been dx'd as a child I might still be playing who knows, so I understand ur wanting to play....
And also let me tell u my fine motor skills were getting worse pre op, and now post op r getting back to where they should be...left untreated if u have nerve impingement it can cause perm nerve damage, this is y I stress seeing a true chiari specialist.
Greetings Selma - I appreciate your "ministry" here on this forum.
I am new to Chiari Malformation as my 17 year old daughter was recently diagnosed via an MRI. She has headaches, some dizzy spells, tonsils at 16mm and small amount spinal fluid buildup but nothing debilitating.
I hate the thought of surgery. I'm just an ignorant dad who is trying to think of an effective alternative to surgery. Two questions...
1. In your opinion, is SM truly a progressive issue? Does it ever just go dormant after showing symptoms?
2. Have you ever heard of "whole body vibration" machines they use on diabetics to better their circulation? I realize there is s blockage going on with CM people but wondering if anyone has tried this as an alternative to get the spinal fluid past the blockage?
I have never heard of that technique to be tried and for those with Chiari can not see how one could endure it...the jostling around most times makes us feel worse...a bumpy car ride etc....so not sure it would be effective without triggering more symptoms.
And I understand ur fear of surgery....but for those of us that have had surgery, I can tell u I am glad I had it and would have it again if need be.
U asked if SM is progressive, do u mean ur DD has syringomyelia as well as Chiari ? If so,, either CM or SM can go dormant...and symptoms cycle...so there can be ups and downs....activities can affect or trigger symptoms and might cause progression to flare....
With CM it is the skull that is malformed and smaller then it should be forcing the cerebral tonsils to herniate...surgery is one way to create more room....
Once u have a DX the next step is more testing and see what other related issues /conditions u might have....syringomyelia, tethered cord,disk issues,sleep apnea,ICP, POTS, and Ehlers-Danlos...as these can affect how one heals and feels post op so u need to know b4 surgery is considered.
Hi, My son has suffered from nystagmus from the age of 3/4 months. He has undergone a series of tests to try to identify the cause of his nystagmus and last year he had a MRI which identified a CM. As a result he was referred to a neurosurgeon. From what I had read on the internet I was expecting to e told that they would be monitoring his condition and in a few years time may possibly need to operate. He shows no obvious symptoms (apart from his nystagmus) of anything wrong and his development has been at the same rate as his twin brother. I was stunned when the neurosurgeon stated that he wished to operate within the next month. He showed me the scans which clearly showed compressionon on the spinal column, and around the optic nerve it was evident that there was a build up of fluid (although thankfully he said that this had not yet caused any damage).
He seems very young to be needing decompression surgery. I was wondering if anyone else had been operated on so young? I am also concerned that he may need further operations to correct this as he grows - how many times can this operation be repeated? I was just wondering if anyone has had any experience with this in such a young child?
My daughter is 5 and has CM2. She has had headaches since she was 2 years old. About 95% of them are in her Forehead area. I was wondering, even though the CM is in the back lower part of her head, could the CM still be the cause of these headaches? Her dr.s can't seem to give me any reason for the headaches.
Many young children have decompression surgery...it all depends on what is going on...u may not notice symptoms as he may not complain, but as a fellow chiarian I know I always had pains after certain activities and just decided I would not do them or avoid them, even having a BM would cause pain, but I thought that was "normal" since I always had them...so he may have more symptoms then u know but has adapted to them.
Next, make sure all testing is done especially since he is so young sleep apnea is done....
Also test for all related conditions...but once u know there is a CSF obstruction and it is affecting the optic nerve it could just get worse if not relieved.
Make sure the surgeon is a true Chiari specialist..not just a NS that does these surgeries every so often u want one with experience and it makes a huge difference.
It is very possible to have headaches in the forehead....Drs feel since the herniation is in the base of the skull that is where all pain should be, but bcuz of how Chiari can compress the brain stem we can have referred pain in our back,shoulders, and legs, so y not the front of our head?
Keep checking diff Drs..find one that has Chiari experience...and see what all is going on with ur DD, she may have related conditions as well....
Also keep in mind Chiari can compress our sinuses too and that can cause those frontal pains.
Have they ruled out a CSF obstruction and syringomyelia?
And other related conditions like sleep apnea?
The entire surgery helped my symptoms, and there is no way for me to say that having the tonsils reduced were the only positive influence, as I feel the way my Dr handled everything overall has helped me.
Did u have a lamenectomy and duraplasty the first time around? Did they rule out related conditions?
What all was done the first time and what is going on that u need a revision?
Yes they did a laminectomy of C1 with a dural graft. I had a csf leak post op and a further csf following corrective surgery and had external lp drain put in and then they just stitched my scar closed from the outside.....
I had a recurrence of headaches 6 months to a year post op and following the operation still cant do any physical exertion as it causes a raised ICP which takes about 6 hours to drain and settle. I had an elevated csf pressure and the neurosurgeons told me i had benign intracranial hypertension which i had little confidence in. Anyway i felt it was a circulation disorder at the base of my skull and proceeded with a vp shunt insertion as i felt it would correct the csf occlusion and it worked reasonably well for about 5 months. The neurosurgeons i was under at the time did not have a speciality in chiari and couldnt understand why i had this recurrent headache on a daily basis. I got myself referred to a specialist who has a specific interest in chiari and had flow studies done etc and he has decided to do a revision as he feels the pressure is developing over the cranial vertebral junction and feels as the tonsils had not been shrunk in the first op that they are still occluding and sitting within the cranial vertebral junction. Have you more than one chiari surgery or did you just have the one? I have confidence that reducing the cerebellar tonsils will have a great impact on the symptoms.
I only have had one surgery for Chiari...I had 2 others related to a fall I had bcuz of Chiari...I torn the meniscus in my right knee and also had an issue with my right ankle which had to be done b4 my knee as I needed it healed so PT would work for the knee....and then my knee surgeon sent me to another Dr thinking I had Lupus and that is how my Chiari was found and dx'd.
I know with the shrinking of the tonsils they may not go back into place completely but the lamenectomy should provide the space ...unless there is another issue like a retroflexed odontoid, or scar tissue,....
Do u know what type of dura patch was used? And did they rule out Ehlers-Danlos, this is important.
I still get symptoms as my tonsils were still 2mm below the foreman magnum post op...and I do have tethered cord which can continue to pull them down....
Ask about the patch being an issue and find out what was used.....skin grafted from u is best....as there is no risk of rejection.
I feel those that reject a patch develop ICP....many have EDS that is undx'd....and have all sorts of post op issues....just what I have been seeing here on the forum.
I have also seen many Drs that do not shrink the tonsils at all and the person still does well.....so, it may be that urs r wide and causing an issue...but do ask about the other issues too.
Well currently i have headaches everyday and worse when I'm in an upright position! I get relief when lying flat so it does suggest its a potential positional obstruction in regards to the tonsils. Im not sure what graft was used but it wasn't a skin graft from myself. The current surgeon I'm now under doesn't use skin grafts he told me he opens the dura and leaves it open without a skin graft as he feels this is more effective etc. When they shrink the tonsills how much do they shrink by? Shrinking the tonsils makes more room for CSF to flow is that correct?
I don't think its a csf leak because i think that would be evident on the mri scans! I had an upright Mri Scan performed in London and it should significant change from the standard Mri scan - it showed the area that was decompressed should significant crowding around the foramen magnum and posterior fossa in an upright position so this is why i believe its positional as the pain up the base of my skull/head resolves almost completely when lying flat! It cant really be anything else for the last 7 years of being told my opinion wasn't correct and it was this that and everything else the medical professionals came up with we have ruled everything out that can possibly be associated with a headache :)
I am 7 yrs. post Chiari I surgery at the age of 60. It was sucessful in eliminating severe headaches, restoring gait, balance & arm strength. My gag reflex and eye conversion were partially restored. My last checkup with Dr. R. was last year, when he found continuing good function of the above. However, I have never had restored bowel or bladder function (these are well-managed), and my chronic nerve pain & sleep disorder increase as the years go by. I used to hurt primarily in my arms and legs, but now it has moved to my back. Headaches are returning. I've been treating for TMJ, but not much help. I'm on Tramadol, Tegretol, Gabapentin, Hydrocodone-PRN, Flexaril, Trazadone just to eke out an existance each day. Is this common, that there is so much nerve damage that I should expect this kind of life? Thank you, diana, asheville nc
Goodness u have a pharmacy of strong meds.... and no it is not common but it does happen....it really depends on how long ur nerves were compressed prior to surgery as to if u will have perm nerve damage.
Have u been back to see Dr R since ur issues continue? Who is managing ur pain meds etc?
There are several things that could be going on, scar tissue may have formed and is creating a new CSF obstruction...Have u had a MRI recently?
Did u rule out Ehlers-Danlos, ICP, POTS, when u had ur DX of Chiari ?
Also since u had bowel and bladder issues did they rule out tethered cord?
Have u tried a night guard when u sleep to help the TMJD....u can try the ones at a sporting good store, place in boiling water so it forms to ur mouth.
What did Dr R say about the bowel and bladder issues?
I have tethered cord and I do have a neurogenic bladder with some bowel issues.....this is y I asked if u had it ruled out.....I also have ehlers-danlos which can add to those 2 issues and can cause HA's....
Is anyone still using this forum? If anyone is I have a quick question.
I recently got a cat scan done and it came up showing that I had an "abnormality" at the base of my neck. Once I asked the doctor what it was he told me it was Cerebral Tonsils and never fully went into depths about it.
What I want to know is... Could this condition be linked to me hearing what I think sounds like fluid sizzling / moving from my brain down the back of my neck? It usually happens when I lay down.
If anyone has any info, it would be greatly appreciated.
No worries....it took me a while to figure this all out too.
Well not everyone with Chiari will have symptoms worsen to the point of needing surgery....
Keep a journal of ur symptoms and what u do on days they seem to feel worse it may help u get a Dr to listen and investigate further.
Did u see a list of Drs by the Ann Conroy Trust? They have compiled a list of Drs that should know Chiari.....if you have not found this list we do have a link to it in the health pages in the Drs list thread.... http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
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