Cerebellar Tonsils/Pituitary Adenoma

I "googled" cerebellar tonsils and was led to your forum.  Our  25 yr. old son just came back from the neurologist today with results from his most recent MRI, which states:  "There is very slight countour alteration of the inferior left cerebellar tonsils of presumed congenital significance.  This has slightly smaller volume than the right.  I do not see a reciprocal abnormality of the brain stem.  There is no chiari type 1 malformation.  The brain stem appears to have normal volume.  The crebral spinal fluid spaces surrounding the cerebellum are unremarkable."

My question is do you think that this finding could be the cause for his symptoms of excruiating headaches (which come and go), seeing spots in his left eye and difficulty with balancing while standing and walking, along with some spasticity?

The neurologist gave him a prescription for Topomax (topamax) which is a migraine medication and told us to follow up with his endocronologist since there were other findings on the MRI relating to his pituitary gland.

The pituitary gland findings on the radiologist's report are:  "There is a slightly low volume sella, but I cannot declare that there is actual atrophy.  What is interesting is that there is a relatively poorly or delayed enhancing left sided sellar soft tissue structure when compared with what appears to be normal enhancement of the right side of the pituitary gland.  It is conceivable this represents a small pituitary adenoma in the left side.  This measures no more than 6 mm in maximum diameter.  Although imaging is improved compared with the 2006 examination, I do not believe there is interval change in this regard with particular attenuation to the subtle left sided sella abnormality."  

Our son was born without the posterior end of his pituitary gland and because of this abnormality suffers from a condition called Diabetes Insipidus (water diabetes).  Also, he does not have other migraine symptoms such as nausea, sensitvity to light and noise.  We are trying to get answers to help us solve this mystery and to alleviate some of his symptoms.  Your help in this regard will be greatly appreciated.

[selmaS]

  Hi and welcome to the Chiari forum.

Well it does sound like ur DS has quite a bit going on with him....

The fact that one of the tonsils is malformed, if I am understanding this, but there is not malformation of the skull ?...is that why it says there is no chiari type I.....OR, is the dr and or radiologist using the size of herniation to determine chiari as most do....if that is the case, I would get copies and send off to a true chiari specialist for review.

The reason I suggest this,  most NS gauge if chiari is present by how far the tonsils r herniated past the foreman magnum....but, the true deff of chiari is the malformation of the skull and the displacement of the tonsils.....and what is most important is the displacement causing a CSF blockage and overcrowding and the symptoms ur DS is dealing with.

From what I understand HA's and imbalance can be the result of dehydration...is he drinking enuff water?....I know his output will be high with this condition...but he needs much more as a result.

And I wanted to ask, since he does have a high fluid output, was he checked for tethered cord?...and  syringomyelia?

  We r happy to have u join us here, but not happy for the reasons that bring u.

  "selma"

[nadine_evens]

Hi Selma.  I'm not very skilled at using a forum and hope by posting this comment, you will receive it.

I'm not certain as to why the radioligist has determined that there is no chiari.  I called  Dr. Jorge Lazareff (found the info. from your forum) at UCLA, which is the closest chiari specialist to us, to find out if he would be able to read our son's MRI (as you suggested), but his office was already closed.  I will check back in the morning.  

You have written some abbreviations that I am not familiar with.  Would you be able to clarify what "DS" and "HA's" stand for?  

Our son takes Vasopressin for his Diabetes Insipidus and without this medication would drink an over abundance of water and have an extraordinary amount of urine output.  His dosing has been monitored and modified by his endocronologist over the years so that he  is able to maintain a proper state of hydration.  He has never been tested for "tethered cord" or "syringomyelia" and I'm not sure what those conditions are.  I plan to find out more information about those by searching on your forum.

We have an appointment with the endocronologist on Monday.  Hopefully we will find out more information about the "6mm pituitary adenoma" that the radiologist also referred to in his report.

You are correct in stating that our son has a lot going on with him.  I feel that one rare condition (Dibetes Insipidus) is enough for one body to handle!  However, I am so very thankful that you are serving the chiari community and that I have a place to go to help sort out all of this confusion.

Keep up the great work that you do!
Nadine

[selmaS]

  I am so sorry I always forget that many of the newbies r not aware of the abbreviations we use...DS= Dear Son and HA = Head aches....here is a link to a list of abbreviations we use-http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

Keep in mind some symptoms may be side effects from the meds:

Vasopressin side effects

Some people receiving vasopressin have had an immediate reaction to the medication. Tell your caregiver right away if you feel weak, nauseated, light-headed, sweaty, or have a fast heartbeat, chest tightness, or weak breathing just after receiving vasopressin. Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Tell your caregivers at once if you have any of these serious side effects:
slow or uneven heart rate;
gasping or trouble breathing;
chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;
tingling or loss of feeling in your hands or feet;
skin changes or discoloration;
swelling, rapid weight gain;
feeling light-headed, fainting; or
severe nausea or stomach pain.
Less serious side effects may be more likely to occur, such as:

mild stomach pain, bloating, or gas;
dizziness; or
throbbing headache.

As for what a syrinx is and tethered cord....

a syrinx also known as syringomyelia...is a cyst that forms from a blockage of CSF fluid, the cyst fills with the CSF fluid and can get larger to the point that it can impinge the nerves and cause possible nerve damage if left untreated.

...tethered cord is when u usually have a diff type of cyst that connects or tethers the spinal cord to the spinal column...this connection also causes less mobility to the cord...and can pull down on the brain stem and cause the cerebral tonsils to herniate and compress the brain stem as well. A few markers for this, the brain stem is elongated..lower back pains, bowel and bladder issues....and most with TC have a sacral dimple.

I hope this helps : )

"selma"

[nadine_evens]

Thanks for the info. on the abbreviations and the explanations of syrinx and tethered cord.  We have also thought that some of our son's symptoms could be related to using the Vasopressin.  He's been on this medication for thirteen years now and it isn't working as well as it used to.  He still gets extremely dry mouth and almost colorless urine.  Hopefully the endocronologist can shed some light on this for us.

Thanks for your help so far.

I'll keep you posted on his condition.
Nadine