Function of Cerebellar Tonsils

[mama2twobabies]

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!

[Phoko]

Hi Romano, so it's not known what CEREBELLAR TONSILS DO? just wanted to know consequences of removing it in Chiari.

[selmaS]

  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

[Romano2014]

Hi! Thank you very much for getting back to me :)

Aw I see, sorry I have never posted on a forum before.

I don't have a copy of the MRI, the doctor just showed me a picture on Google to try and describe it to me.

As far as the report, they said that there was nothing to worry about... but hearing "abnormality" makes me worry lol

~Romano

[selmaS]

  Hi and welcome to the Chiari forum,

Yes, this is an active forum, u just posted on an older thread.....no worries....but it is best to post on a newer thread, create a new one and continue ur questions there.

And yes, it is possible to have the sensation to hear what sounds like a fizzy bubbly sound....

Do u have copies of ur MRI or the report?

[Romano2014]

Hello all!

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.

Many thanks,
Romano.

[selmaS]

  Hi and welcome to the Chiari forum,

  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....

So I am Curious as to what Dr R has told u.

[dinee1]

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

[ecorb04]

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 :)  

[selmaS]

  Did they rule out a CSF leak and POTS?

Oh ok, so they either took it from ur scalp ur pericardium....or ur thigh....not sure what that is called or referred to....

It all different with each of us as to how much they retract...but none that I know went up and above the  foreman magnum.....

Not always does this give more room, and ur issues that r positional lead me to think it is either a leak or POTS

[ecorb04]

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?

Kind Regards

[selmaS]

  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.

[ecorb04]

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.
Regards

[selmaS]

  Hi and welcome to the Chiari forum.

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?

[ecorb04]

Did shrinking the cerebellar tonsils improve your symptoms? I am due to have a revision surgery and this is what they plan to do.

Regards

[selmaS]

  Hi and welcome to the Chiari forum.

Aww what a cutie u have, I saw the pic of u 2....

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?

[selmaS]

Hi and welcome to the Chiari  forum.

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.

Hang in there <3

[hnh1384]

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.

[nickymarie]

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?

Nicky

[selmaS]

  Hi and welcome to the Chiari forum.

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.

I hope this helps.

[philber007]

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?

Thank you for your kindness.

p

[selmaS]

  Hi and welcome to the Chiari forum.

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.

[steveSOS]

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.

[selmaS]

  Hi and welcome to the Chiari forum.

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.

[bigred100]

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.