2-3 mm cerebellar tonsillar ectopia

[jesswabbit26]

Hello, today I was given my MRI Results which read '2-3 mm of cerebellar tonsillar ectopia. There is no significant crowding of the posterior fossa. No syrinx is seen within the visualized upper cervical cord.' I am 23 yr old female, 5'7 and 132 lbs. I don't not recall any head trauma. I am very concerned because I am not educated thoroughly on what this is, but from what I read I need more tests ; / . I originally was given an MRI because I was having numbness in my left foot (two toes) and then tingling in my extremities on and off. I also have a pinching feeling in my armpitts that is very painful that comes and goes. I was told from others ' it's anxiety' ...I've also had period of non stop headaches, mild but still bothersome along with neck pain....they told me this was 'tension headaches from stress' now I wonder if these symptoms are actually due to this.  I have a one year old daughter, while I was pregnant my BP was always normal...now it seems as though it is low...89/60 some days. Could this also be a side effect? Any help or advice would be appreciated, I feel rather alone at this point.  

[selmaS]

  When the tonsils are as low lying as urs the Drs may not think they can cause the symptoms u have.....and symptoms can cycle,....and it is possible to have good days and bad that can last for short periods and long periods.

Chiari and MS have similar symptoms but without lesions on the brain and demylation not sure where they get the possible DX from.

The biggest issue is u need to get to a true Chiari specialist to help DX u.....all the crazy stuff is pretty typical with Chiari.

[sherylwg]

Yes thank you for speaking with me! My symptoms were memory loss, dizziness, passing out into a sleep that I could not be awaken from, confusion, numbness and tingling, all over the body at different times, tremors in both hands primarily on left. Goodness there is so much. During this time a ct scan of the brain was ordered and i was symptomatic. By the time a MRI was ordered and approved I was no longer symptomatic. The CT scan showed that the tonsils drooped and was suspicious for Chiari Malformation but the MRI said that the tonsils droop but not 2-3 cm. I have been 2 years with various symptoms, none so furious as those until 2 weeks ago and I started the same types of things. For years drs would tell me that MS was probably my future, but none worked me up. Now they are ready to. I looked up the ectopia that I found on that ct scan and from there it led me to you. So what I am wondering is can those tonsils swell up when you are having such bad symptoms and then shrink and the bad symptoms subside? I have some crazy stuff going on lol

[selmaS]

  Hi and welcome to the Chiari forum.

If u r asking if the cerebral tonsils can widen and descend lower, then yes to both.....

  There are several related and non related conditions that can cause many of the  same symptoms as Chiari or low lying tonsils,

May I ask what symptoms u have  that a MRI was ordered?

BTW- it is not just radiologists that do not understand this condition there are many Drs with NS's included...so it is important to research Drs to find the right one to help u.

[sherylwg]

I was just going over my MRI's (many) and looking up what each said and the terms that I did not know. I stumbled in here and wow...I learned alot from you and think maybe the radiologist did not understand what effects cerebellar ectopia has on the body. I do have a question too....does these tonsils swell and go down?

[selmaS]

Yes...MRI's r the best way to get a full check...for CSF flow u want a CINE MRI...and u want a Brain MRI w/wo contrast, a cervical MRI, a thoracic and lumbar MRI....


Many of us do have increased sinus issues as the pressure can affect that glad as well....it is not  strange to have this finding.

"selma"

[jesswabbit26]

One more question (sorry again) My MRI also says there is trace mucosal thikening in the bilateral ethmoid sinuses, are you familiar with what this is?

[jesswabbit26]

I'm going to be sure to bring up both of these to my neurologist, and if they disagree I will go elsewhere until I can get these looked at, are they MRI scans as well?

[selmaS]

Hi...well there r many drs that will not look beyond the cervical spine for a syrinx....it is a cavity that fills with CSF fluid from a blockage in flow...the cyst can grow larger putting pressure on nerves...if left untreated, it can cause perm nerve damage.

Many of us with chiari r checked for a CSF blockage and syrinx, if we have a blockage we have surgery to help prevent the formation of a syrinx.

U should also rule out tethered cord as well, and look at ur disks as well.

"selma"

[jesswabbit26]

I was not tested for a syrinx, I only had a brain MRI, and it says that 'No syrinx is seen within the visualized upper cervical cord" but I suppose it could be else where. What is a syrinx exactly?

Thank you again.

[selmaS]

It seems many of us have a form of scoliosis....some more severe than others, but we all many have it to some degree.

Many have been misdx'd with MS...so it is not so far fetched....and I know most of us r tested to rule it out as well.

What u mention sounds more like u may have a syrinx...not sure where it may be located...do u know if u were checked for a syrinx in the cervical spine, thoracic spine and the lumbar...plus u will wan to rule out tethered cord. It can be the reason u have scoliosis.

"selma"

[jesswabbit26]

**Also

I notice that if I drink alcohol my left side seems severely affected the next day, plagued with throbbing aches in my arm hand and leg?  I don't drink very often but if I do I make sure to also drink plenty of water before bed to help reduce this....could this also be an effect...or something else. Sorry for all of the questions, I am just full of them an each appt I've made in the last couple of months the doctor coincidentally does not show, and then they have so reschedule me ...so on and so on.....

[jesswabbit26]

Thank you, your replies were comforting. Yes I had a natural childbirth that included three days of back labor, I know right...not what I signed up for. lol ; D

I also have scoliosis as well, also an epidural so I thought some of these things were because of that, but I did not have these symptoms until about 4 months after delivery, so I ruled out epidural damage, and I have had scoliosis my whole life so I'm not sure that has anything to do with it. I'm not experiencing anything now but neck pain and (left big toe stinging sensation) but I believe this could also be from something else. When I stand in the morning upon getting out of bed, my first couple of steps always feels awkward, stinging or tingling if you may (as if the blood were barely flowing to them.) I also get rushing sensations in my feet, hard to explain. If I work too long my feet feel like they are, for lack of words, on fire. This made me believe I have MS, but apparently this is ruled out, and also no suspected by the docs. so now I'm left with this new diagnosis and no clue if they are related? Have you ever heard of this?

[selmaS]

Hi and welcome to the Chiari forum.

Know this, u r not alone...many of us have gone thru what u r feeling and how u r being treated....it gets better once u see a true chiari specialist.

Too many inexperienced drs only check the cervical spine for a syrinx...which can be a result of a traumatic event or injury, but they can also form from an obstruction of CSF....

They can also form in other area's of the spine such as the thoracic and lumbar spine...but again drs that r not chiari specialists do not check these areas.


We all may have anxiety, but it is usually from drs not listening to us...lol....not like they choose to make us feel.....


Not sure if low BP is a chiari effect, but mine has always been low....

Having a child, could have triggered ur symptoms to increase as the strain from natural childbirth will affect us.Did u have natural child birth?

U deff need to find a chiari dr to get their opinion...we do have a list, it's intent is to give u  a head start with names to research and not as a referral.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

We r happy to have u join us, but sorry for the reason u had to seek us out.

"selma"

[pamk5]

Hello Jess,  The best thing for you to do at this point is get your films and reports and seek out a true CM specialist.  Sounds as though you have atypical CM or not enough herniation for most doc's to even call CM.  The true specialists know that the size of the herniation is not important it is whether there is CSF blockage and crowding.  In order to know that you will need more tests like a CINE MRI and other conditions will need to be ruled out  

I have always had low end blood pressure my whole life around 110/70 most of the time.  Since my accident in August (when I was diagnosed) mine has been all over the map.  Dropping when I stand, rapid heart rate recently I was diagnosed with POTS (postural orthostatic tachycardic syndrome) and NMH (neurally mediated hypotension)  according to the Cardiologist who did the tilt table test my brain stem is "pinched" is what is causing this. Make sure next time you are at the doc ask for orthostatic vitals to see if you have bp dropping when you stand.  Also, do you ever feel like your heart is beating out of your chest?  It could be related to the above.  So I guess the long answer is yes it can be causing it.  

Did you have natural childbirth?  The pushing that comes with delivery can most certainly make a hernation worse and/or bring on symptoms and is not recommended for those people who have CM.  It is recommended that they have Csections.  

I hope this helps.  Let us know if you have more questions.

Pam