5mm droopy brain tonsils, or MS?

[alucheni]

As of the last couple months, I've had many symptoms typical of MS. I think MS is quite likely, though I noticed on an MRI taken a year ago that the radiologist had dictated this:

"IMPRESSION: The cerebellar tonsils extend approximately 5mm below the level of foramen magnum compatible with cerrebellar tonsillar ectopia/borderline Chiari malformation."

My research so far suggests that this would be asymptomatic for most people but that a small percent of the population could in fact have problems. Check out this site about borderline Chiari: http://www3.sympatico.ca/ejfs/chiari0.html

One year ago my only symptoms were light headedness and pain in the chest+backofhead that could be made worse by exertion. Three months ago is when my seemingly MS symtoms have come onto the scene. A month ago, an MRI of the head and C-spine have shown no demylenation. Current symptoms span the gambit of things I read about MS, some of which specifically exclude similar neurological problems. For example, I get "intention" tremors as opposed to the "resting" tremors seen in Parkinson's. Also, I have vision problems that are more severe in one eye. I'm 27 years old, male, caucasian, and live in Ohio. Many symptoms shuffle throughout the day and appear/disappear.

What may be a bit unlike MS is that I'm having some mild breathing problems already and sometimes experience harsh radiating pain when sneezing. I know that this can happen in MS but I'm hardly disabled yet. It seems odd. What are the chances of having 5mm freaky brain tonsils and MS at the same time? Thank you so much.

[jgoldie]

You all have very interesting situations.  I have a Chiari Malformation with very minimal herniation, less than the classic 3-5mm.  It causes me many symptoms, primarily head pains--the classic severe short 'temple' kind and the longer dull base of skull kind.  Chronic tinnitis, vertigo, FATIGUE, etc.

Don't let any docs tell you that your Chiari--no matter what size herniation you have, wouldn't cause the odd neuro. symptoms.  Many of them do not keep up on the latest research on Chiari 1 Malformations.  I feel the best resourse in the U.S. is The Chiari Institute, in Great Neck NY.  They recognized my minimal herniation after several other neurologists 'missed' it, (even a very well known "Neurological Institute" in the Southwest!!)

Please read the study by Thomas Milhorat, "Chiari Redefined" which clarifies that it isn't the size of the herniation, it is the symptoms and LACK OF CSF space behind the cerebellum, etc.  I've had to fight this point with a few docs, etc.

http://statlink.duke.edu/medstat/pdf/milhorat-et-al.pdf

My 'new' issue, is this:  On my most recent MRI, it reveals 'few small hyperintense foci in the frontal white matter which are nonspecific'.  This was found in Oct 06, my last MRI in July 05 did not show this.  I'll be interested to learn if this somehow relates to my "CSF issues" related to the Chiari 1 Malformation?!  hmmm...

[fap123]

dondi65:

I too have been recently diagnosed with 4mm herniation which CC doctor states not causing my symptoms.  I don't believe him.  My symptoms since 1/1/06 are tingling in lower legs, feet, right shoulder arm pain.  Slight twinges of pain at right skull base, glucoma, vision issues, some head tingling, hoarse voice.  I really starting to worry now.  I recently had C and T flow studies and a brain MRI.  Dr @ CC states flow is OK.  Just 4 mm herniation.  If you dont mind I would like to hear how things are for you.  have you been decompressed?  What Doctor's have you seen.

Thanks

FAP123

[dondi65]

I was dx with chiari 10 years ago, i have intention tremmors,pain and muscle weakness in my hands and legs, visual problems,numb & tingling in my hands and feet,I get regular headachs from straining and coughing but they are not as bothersome to me as the other symptoms i get. you may have developed a syrinx in the spinal cord wich is related to chiari and can cause all of your syptoms, the length of the heriniation is not always as important as is the shape and width  wich would obstruct you csf flow

[dznse]

Does anyone know if a person with ACM 1 can be symptomatic without having the well known "chiari headache"? I recently discovered that I have ACM 1. My neurosurgeon said that he doubts that my symptoms are from ACM. My symptoms are a funny feeling on right cheek (not numb but funny), a cramping feeling in right arm and leg (that subsides after being massaged), and a dry feeling in my right eye. The thing that concerns me is that it is all on one side. The rest of my MRI was normal, including all ventricles.

[alucheni]

For example, this neuro says that intention tremor is uncommon in MS. *buzz* incorrect. See, the trouble with the medical profession is that there's not much of a penalty if you're wrong (well, there are lawsuits i suppose). The patient simply spends more time and more money until he or she eventually gets a proper diagnosis. By the time it's overwith, the patient is too exausted to yell at the dufus who could have had it right the first time. I'm not trying to slam this particular doctor; this has been my experience with a majority of docs.

Here are five different websites that discuss intention tremor in MS. Intention tremor is most certainly common in MS. It's really too bad that my diag will probably be MS... if it's not, I'm becoming a doctor. Lol, I challange someone to find proof that intention tremor is not common in MS.

This took me 5 minutes to find.

http://www.mult-sclerosis.org/intentiontremor.html
http://www.merck.com/mrkshared/mmanual/section14/chapter180/180b.jsp
http://jsumption.com/imssf/modules.php?op=modload&name=News&file=article&sid=35
http://www.thisisms.com/article-topic-44.html
http://www.nationalmssociety.org/brochures-tremor01.asp

[alex70]

Alucheni-

I have some of the symptoms you describe in the vision area. It was finally dx as central cirus retinopothy. Originally they thought age related macular degeneration, however i was about 28 at the time. I had a small fluid filled blister on the wall of the retina that caused a 'warping' as you described. Central vision is distorted and comes and goes with stress. Laser surgery I was told can stoop the advancement of the vision loss, however, it also permanently removes the vision from the area of treatment. I opted to not so surgery - and try not to stress too much (yea right, typa A personality). Went through a flourisine test to help confirm. I just recently started having the excruciating pains in chest, arms and upper back when sneezing, so that's what landed me on the thread.

[malden]

Alucheni if you don't mind me asking what are your eye symptoms? What are your other neurological symptoms and do they wax and wane or are constant? Did your symptoms start suddenly or gradually? Where you in good health before onset of symptoms i.e no neurological symtoms you can remember from years ago? Sorry for asking so many questions but I have ongoing problems since January and one specialist thinks it might be a Chiari that why I wan't to learn more from others who have or might have the condition. Thanks.

[alucheni]

My symptoms are all over the board. It sucks pretty hard. My eye symptoms are atypical for MS in some sense. For example, I've noticed a bit of a "warping" within a certain focal point in my right eye for several years now. Optic Neuritis tends to come in spurts and then go away. Though, I've heard a few reports where this is not the case

Everything was relatively dandy until about 3 months ago when my vision became noticably worse (now including the left eye to a lesser extent). I also noticed that I had trouble reading

An opthamologist hasn't been able to find a neuritis, MRI showed nothing, and apparently I passed the vision test. But... I know that my vision isn't right. Also, I tend to have contrast issues. I also get some sparkly effects in my eyes (think kalideskope, not stars).

About one month ago, I became quite ill for 2 weeks. I had some minor hallucinations (waving), nausea, and at some point my balance got thrown out pretty hard. Also, I lost some coordination in most every body part (I feel kind of like a robot). My fine motor skills suffered randomly. Sometimes my left hand gets clumsy, sometimes it's my right. Lately my hands have been spared. My gait became a bit hobbled... I walked like I had a jock injury. My eyeballs sometimes bounced around (nystagmus). I had/have pins and needles all over the place. My pinkie and ring fingers would be numb every morning... soon my right forearm was involved. I had some trouble breathing (not real bad, but noticable). The balance problem has slowly been getting better as have some of the pins and needles and coordination issues. Lately I've had just shallow breathing and pressure sensations in my head. My vision is still whack and I am no longer able to read my engineering books without a significant effort (this is due to vision & some congnitive slowness). I do appreciate the good doctors advice but I'm not putting too much hope into a Chiari diagnosis. It would be nice, but, none of my symptoms are aggrivated much by movement except for the occasional sneeze which feels like getting slowly steemrolled from center to head/neck/arms for 20 seconds.

I'm HOPING it's Chiari. The Chiari esque symptoms are: breathing trouble, sneezing pain, and I've headaches in the past that resulted from exertion. Also, I remember having some breathing complaints when I was really young (13). Finally, I remember getting intense stiff necks when I was quite young.

Additional miscellaneous symptoms: (all waxing and waning)
1. Mild twitchyness all over. I had a little bit of creepy twitching above the left side of my lip.Mostly gone now.
2. Electric shock that attacks my right thumb.
3. Something equivalent to a L'Hermetts sign but seems to activated when I extend either of my legs forward. There's an electrical sensation that hits the bottom of the extended foot. On the left foot in particular, the big toe gets zapped pretty hard.
4. Intermittent vertigo.
5. Unbelievable anxiety which has always come in waves for me for many years (feels like getting attached to a car battery). The 2 weeks of hell that I described above also came with the familiar anxiety spells that I've been dealing with for 5 or so years. Anti-depressants do help except during the acute phase (they also seem to help with pain and tingly feelings that I get).

I'm still thinking MS. Though, if the neuro wants to chime in again that would be nice. :)
Yes I will try and get those C-SPINE evals as well as the evoked potentials. It's hard to get tests in a timely fashion and I even work for a hospital.

Then there's the possibility that I have some sort of mitochondrial problem... boy that'll be the luck. That sucks worse than either of the others.

I've been to so many doctors at this point and it's amazing how they will contradict eachother over and over. These aren't easy things to diagnose but I sympathize hugely with anyone who's been having a hard time. I am just assuming that I have MS for now but hey maybe I'll get lucky and just need brain surgery lol. Life sucks but I'm trying my best to eat poop with a smile. Good luck to the both of you. Check your insurance policies NOW. I lucked out and picked up some long term disability last year along with a plan that allows at least some out of network support. If I get disabled (which at this point I am sort of counting on at some point) then at least I'll cripple out in relative style. Not the style that I was hoping but hey whatever.

[lat67]

Hi,

Was wondering if you could read my comment on the next post that talks about numbness and exercise...your thoughts would be greatly appreciated.

Thanks,

Lesley

[mars38]

I found your question quite interesting. I am a 38 year old female from Ohio I have had neck and lower back problems for years all blamed on psoriatic arthritis. You can read more about my symptoms on my question I posted about a week or two ago. I just got my results of my brain and cervical MRI.They had origanlly thought I might have MS but are now going to check out rather or not my 3mm droopy tonsils is indeed a Chairi 1 malformation or not. When my doctor called me he said I had a Chiari 1 malformation interestingly enough when I picked my MRI results in case I needed to take them to my next appointment the radiologist noted the 3mm droopy tonsils as probably normal for me,and suggested that since I had T2 hyperintensity in right mastoid air cells that mastoiditis be ruled out also,funny thing is that my doctor doesn't know that I picked these up and I was quite worried until I saw what the radiologist said was probably normal. I don't know why doc did't mention that or the mastoiditis. He is just as frustrated as I am at this point I think I've pretty much been done since June. I'm waiting for an appointment at Medical College to see what the neuro surgeon thinks.Let me know how you come out. Good luck

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    The signs and symptoms you describe are more likely to be due to chiari, rather than MS (multiple sclerosis).  An MRI of the brain and C-spine that does not show any demyelination is reassuring.  Also symptoms that come and go during the day is not the clinical picutre of MS.  MS exacerbations cause focal symptoms that last for 3-4 weeks (untreated) on average (much longer than you describe). Chiari symptoms can change rapidly.  They will respond to increases in intracranial pressure, such as valslava maneuver (bearing down), sneezing, bending over, etc. You also describe an intention tremor, which is seen in cerebellar dysfunction and common in symptomatic chiari malformations (and very uncommon in MS).
I would recomend an MRI brain with CINE flow study to evaluate for CSF obstruction around your Chiari.  I would also recommend some evoked potential studies to evaluate your c-spine (often kinked in chiari malformations) and a visual evoked potential to evaluate for past optic neuritis (seen in MS).
I hope this has been helpful.

[Bobadeli]

In the 2ndor 3rd decad of age its normal to have tonsiles extending up to 5mm . after that age the accepted nuber goes down to 4mm untill you are 90 years old then goes to 3mm
But what is really importat is the shape of the tonsils          (? triangled or pointed) and also the symptomes
1- Chiari could give MS like symptomes (any way MS symptomes are not what you are describing)
2- Chiari 1 spells are symptomes when you sneez or push up u get dizzy, back head pain..ext which means the pressure is building up in your head for few seconds
3- But what may worry me is the episodes of breathing difficulties which should not be of a long duration ..generally speaking, u should keep an eye on thes episod and see a neurologist to re evaluate your recent MRI for any signs of brainstem (the base of the brain)compresiion.
4- it could not be easy for you defferentiat (as many GPs)between an actual intention tremor from a physiologic tremer.

In brief try to get your MRI re evaluated

    Bob

[alucheni]

I do have a history of intense pain in the back of my head when performing certain strenuous acts. For example, sometimes if I'm singing or (lol) sometimes during sex I'll get a wicked headache in the back of my head that can last for several hours if not the whole day. This happens from time to time, but I notice that it's alleviated a lot by the Effexor I take. Now instead of raw pain, I get a pressure sensation that starts at the back of my head and can crawl up higher.

In many of the self reported testimonials I've read; Chiari sufferers have mentioned steady symptoms in addition to ones that were agitated by movement. Many were falsly diagnosed with MS. Also, it seems that the size of the the abnormality is now less important than how the abnormality affects the passage of CSF or applies pressure to the brain: http://www.chiarione.org/chiari.html

As far as my symptoms not being MS-like, I just plain have to disagree. I've spent many many hours and days reading about this affliction and it's quite common to have asymetrical vision problems and intention tremors (this is in addition to a host of buzzing/numbness/gait issues that I didn't have room to mention). It's pretty simple to differentiate between intention tremors and resting tremors I think. One activates when you move, one activates on it's own. The third variety would be an "essential" tremor which I don't think is relevant here seeing as I'm having a zillion other problems too.

Anyway, I do agree that I should get my MRI re-evaluated! That's what I intend to do. What I'd also like to do is possibly speak with someone who has experience with both afflictions...

I'm soon to undergo a lumbar puncture. Perhaps that will illuminate things some. Anyway, I'm trying to prepare mentally for the worst while hoping for the best.