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Can Chiari just "go away?"

Hi!  Two years ago I was diagnosed with a Prolactinoma (tumor on my pituitary).  In doing the second MRI during the course of treatment for this, they found that I also had a Chiari Type 1 Malformation.  I was sent to a neurologist who decided that at the time I seemed asymptomatic (headaches were infrequent and could be caused by the tumor; dizziness could be attributed to the bromocryptine that I was on for the tumor, etc.)  The neurologist agreed that it was a Chiari Malformation, but told me not to worry about it unless symptoms started.  I did not have a syringiella at any point.  When the tumor shrank, and I went off the meds, I was diagnosed with extreme anemia (still dizzy, too!) and put on iron for that.  Now, my dizziness seems less extreme, but I still have moments of it--sort of that feeling of unsteadiness.

I still get regular MRI's to monitor the tumor/Chiari and after the one I had last week (my 5th one?), I was called by my doctor's office with the results.  The receptionist said, "Your tumor is still stabilized and your Chiari is gone."

Can this happen?????  I'm happy if it can, but it doesn't seem possible.  Anyone know anything about this or have the same experience?

Thanks!  Terri

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Avatar universal
Hello,

I was diagnosed with chiari 1 malformation with mildish symptoms. I have been going to PT very regularly for lots of issues and he has been working on lengthening my Vagus nerve. I have had 2 minor abdominal surgeries 20+ years ago and because of that, my PT said that there is a lot of scar tissue in my abdominal area, along the vagus nerve and because of that, he said that basically the scar tissue is like a ball of hair in the dryer; it gets tangled up into a ball and gets tighter and tighter, pulling the loose, long hairs into the center of the ball of hair. So he has been doing a lot of soft tissue work in my abdominal areal, my legs, my groin and my neck(everywhere the vagus nerve runs) and at my last neurology appt, my chiari was gone! I truly believe that the lengthening of my vagus nerve (and the soft tissues around it) allowed my tonsils to go back up into their proper position because the vagus nerve and soft tissue were being pulled towards my abdominal area. Just thought I would share my experience. Pretty amazing especially since the neurologist who originally diagnosed me told me that in order for it to go away, I needed to lose weight...I never went back to her.

PS...just because they think they know the causes for certain conditions, does NOT mean that they know ALL of the causes, so please don't settle for a question with which the answer you received did not satisfy your gut.

Angela
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620923 tn?1452915648
COMMUNITY LEADER

  I know it may seem very improbable BUT Chairi symptoms change and cycle.....not that I want to be a "Debbie Downer" but it is possible that other symptoms may surface and it is also possible that you may not have any further issues.....we are all different as to how this will affect us and our overall health.

I pray you continue to be symptom free.
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1679858 tn?1346765181
Hi,

This is very interesting. I truly believe that I am an example of the brain/scull development resulting in disappearance of symptoms.

I was diagnosed at 48, I had no symptoms what so ever until my teens. At that time I suffered severe torticollis. It was extreme neck pain that caused me to not be able to move my neck. I just dealt with this as a kid and never saw a doctor about it. My parents just blamed my sleeping position or drafts. (probably should have seen a doctor!). Anyway, this neck pain occurred every couple months and lasted two to three days. It continued until the age of 34. The last time it happened, it was severe!! After that time, it disappeared!!! I am now 54 years old. At the age of 43, I rode a rickety rollercoaster. Five years later, at the age of 48, I began to feel shuttle symptoms. For the last seven years, I have been diagnosed with a 13mm herniation and the symptoms were considered to be severe anxiety. It was just recently, that my new (and very smart) family doctor discovered that I am having an inflammatory reaction that is coming from my neck. It was discovered during a sinus infection. I was getting severe sharp neck pains and pain on the top of my head. He told me my symptoms were REAL!!! (After being told I should stop riding the roller coaster of tests and that i had no neurological symptoms by my neurologist!!!)

Just want to share my story. I think the fact that my neck pain suddenly stopped must have some relevance here.

Hal
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620923 tn?1452915648
COMMUNITY LEADER

  Hi Bella and welcome to the Chiari forum.

Not everyone may develop worsening symptoms....but Chiari is ever changing....the symptoms cycle so they can come and go and come back differently then they were b4...and certain activities and stress can trigger symptoms to flare..even a cold or flu can be a trigger...and there is no rhyme or reason for why symptoms worsen.

There is a lot on line about this and some of it is not correct info....many articles say that Chiari is rare, it is not....what is rare is well informed and experienced Drs as you mentioned....but there are out there and we might be able to help you find one in your area or one you might be able to travel to.....

Know that everyone will experience this differently and you are not alone.
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620923 tn?1452915648
COMMUNITY LEADER
Hi...I think what this article is saying is that a low lying tonsil or herniation can resolve...but, as u said it is a possibility that it's cause such as a CSF leak may have resolved allowing it to correct itself....However,  a true chiari malformation is the skull being mis formed and smaller than normal......then u have the herniation of the tonsils....this is y many MRI say low lying tonsils.....and y these people may not have many symptoms as early as those with the smaller cerebellum......they r all inter related but different.

I appreciate ur efforts to bring this info and I find it very informative and helpful : )


Thanks
"selma"
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Avatar universal
Hey there, I haven't been on in a while but I wanted to share an article that I came across on www.conquerpediatricchiari.org.  It is finally something that gives a little truth that there are cases where a detected chiari disappears.  I know I would have loved to have seen this 3 years ago when my son's chiari was detected. When Dr. Moriarty told me and my husband this year that it looked like my son was outgrowing the chiari, I didn't believe it.  This shows me it is a possibility......

March 31st, 2009 --  Spontaneous resolution - meaning Chiari that goes away on its own - has been documented in the medical literature, but is poorly understood.  Though it is certainly every patient's (and parent's) highest hope, how often it occurs, why it occurs, and who it occurs to is largely unknown.  Now, a report in the Journal of Neurosurgery:  Pediatrics from a group of doctors at Duke University (Waldau et al.) offers some clues as to one possible mechanism underlying the near miracle of spontaneous resolution.
     Chiari & Syringomyelia News has reported on cases of spontaneous resolution, primarily among children, and this journal article cites several such examples (Figure 1).  Despite these reports it is very difficult to estimate how often this might occur.  Certainly, a handful of case reports compared to hundreds of thousands of confirmed cases implies that it is a very rare event; however, it is impossible to know how many cases might have resolved on their own without anyone knowing about it.  
     Further, it is not known how or why Chiari can resolve on its own, although there are several logical possibilities.  First is if the underlying cause of the herniation resolves or heals by itself.  For example, Chiari can be caused by a spinal fluid leak which lowers the pressure in the spine compared to the brain and essentially pulls the cerebellum down.  Some such CSF leaks are known to heal by themselves over time, so some cases could be due to an initial CSF leak which heals.
     A different possibility involves the relative growth of the skull and the brain.  A leading theory for a major cause of Chiari is a small posterior fossa (the part of the skull where the cerebellum is situated) which forces a normal sized brain out of the skull.  There is a significant body of research which supports this theory in part and researchers have begun to focus on the potential dynamic nature of Chiari in children by looking at the relative growth rates of the skull versus the brain.  In other words, if for a period of time the brain grows faster than the skull, then a problem can develop.  However, if at a later time the skull catches up with its growth, then perhaps the problem, or the herniation, could resolve itself.  Given the tremendous growth which children go through, this is certainly a reasonable theory.
     It was this theory that the Duke researchers decided to explore when they encountered a case of spontaneous resolution in a young boy.  The child was first seen at the age of 3 for seizures.  The doctors determined that he had a genetic disease known as tuberous sclerosis which was causing the seizures.  However, during their testing, they also found that he had a 13mm Chiari malformation (Figure 2).

Figure 2:  MRIs Showing 13mm Chiari at Age 3 (A) and Complete Resolution at Age 7 (B)



Despite its size and shape, the doctors could find no symptoms or problems directly attributable to the Chiari and there was no syrinx.  When the boy was seen again at age 5, it was noted that the tonsils had ascended partially, and by the time he was 7, they had risen back into the skull (Figure 2 B).
     In order to understand how this may have occurred, the Duke team used morphometric analysis to measure the volume of both the posterior fossa and the cerebellum from the MRIs at 3 years of age and 7 years of age.  Techniques to calculate these values have been published previously.  To minimize error, the researchers took the average of the results from five different experts who performed the measurements.
     Interestingly, they found that all four volume measurements - posterior fossa and cerebellum at age 3 and 7 - were within published normal ranges for children that age (Figure 3); however over that period of time the posterior fossa grew 11.5% compared to only 4% for the cerebellum (Figure 4).  In other words, at age 3 the cerebellum was much larger relative to the space available than at age 7.  The authors of this study did not do so, but other publications have focused on looking at just such a ratio.  Regardless, the data is suggestive that the relative growth rates of the posterior fossa skull and cerebellum may have played a role in the Chiari resolving naturally.
     Due to his genetic condition, which involves masses in the brain, this patient is not a good one to generalize from; however, the approach the researchers took in tracking morphometric changes over time is interesting and applying it to more and different Chiari patients may provide some valuable insights.  
     It is also worth noting that cases such as this paint a picture of Chiari as a dynamic condition, in which not only symptoms can change, but the underlying structure can change as well.  This is contrast to the traditional view that a person is born with Chiari and remains that way.

-- Rick Labuda

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620923 tn?1452915648
COMMUNITY LEADER
Hi...well what u r saying is interesting and hopeful.

From my personal experience, I have had issues since I was a child and never outgrew them, they continued to get worse.

I am sure with chiari both sennairio's (sp) are possible...and like u said we tend to only hear the negative aspects of this condition.
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1 Comments
Hi , I got diagnosed about a year ago because every year about maybe 6 times a year I get bad bad migraines , arm goes numb , speech gets slurred , dizzy , nausea,  vomiting, that last for about 6 hours then its over and doesnt come back for a long time . What you said how it kept getting worse is scaring me because I always had it in the back of my mind thinking it could maybe get worse. And what I think isn't helping anyone else with this is that not many doctor or surgeons know a lot of this condition. And when you said it got worse , how often do you get the symptoms and what are your symptoms?  
Avatar universal
His neurosurgeon is Dr. Thomas Moriarty here in Louisville, KY.  I personally think he is fantastic.  He has always answered all of our questions and made us feel like he had all of the time in the world.  From what I have researched and heard from others (including our Pediatrician) he is the one to go to if you live in any of the surrounding areas.  He gives a lot of time to Chiari research.

When my son went to his 3 year well check up, I had asked the doctor to feel his tail bone because when he lays down and has his knees up, you could really feel his tail bone.  (Make a fist and feel your middle knuckle, that is what it fealt like).  He also noticed the dimple at the top of his buttox seemed to be deeper than normal.  He thought it was best to get the MRI to make sure everything was o.k. and we agreed.  My son wasn't having any symptoms, we were just wanted to make sure.

He had 2 MRI's back to back and the only think that showed was the Chiari.  Since then, he has had a yearly MRI and a visit with Dr. Moriarty with no changes and no symptoms.  When we went for the results of this last MRI on Wednesday.  He put the scan from last year and the scan from this year on parallel computers and compared the differences.  You could see where there was less crowding around the spinal cord and the cerebellum was not as far down. Believe me, I questioned him about the angles and slices and he showed me several markers that had the same measurement on the sides of the screen.  

He also told me about a patient that came to see him after being in a car accident.  She had an MRI which detected the Chiari but she wasn't having any symptoms. She came back the next year and there was no sign of the Chiari and there hasn't been ever since.  

I seriously trust his medical knowledge and diagnosis, however, I will keep my precautions until we go back in 18 months and see that it is still improving or non-existent.  As long as he is not having any symptoms, I am going to stay positive.

By the way, I asked the doc why I didn't see that you could outgrow it on the internet and he said that it's out there, you just have to dig.  He said that like in all news (celebrity, politics, etc.) you see the bad, more than you see the good.  After our appt. I went online and looked it up (which is how I found you all) and I did find a couple of pages stating scenerios where a chiari had disappeared.  I am going to try and look into it more.

So, my question is: Can Chiari be apart of normal development? Can some poeple grow out of it before it causes problems?  He said that long ago Chiari was considered a birth defect.  It is becoming more and more common with the use of MRI.  Have many more people had it but never knew it because they didn't have symptoms and they just grew out of it.  Human growth and development is such a mystery.

Thanks for listening, it does help!
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari Forum.

Well that is one of the first times I ever heard that chiari can go away on it's own.May I ask who ur dr is, mayb he can help some other members still looking for a chiari specialist.

I also understand TC did not show up on a MRI, but as I was to understand not all will and is y it can be called occulta tethered cord as occulta means hidden...same with occulta spina bifida....it is not obvious like a true spina bifida as that can be seen on the outside of a new borns body.

There is so much to learn and know regarding all these related conditions.

I am glad to hear the report on ur DS, may I ask does he show ne symptoms?There must be a reason at age 3 he was checked for TC and I wondered what the signs were he displayed.

Welcome again to our little family and I am so glad to hear u have good news to share : )

"selma"
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1179332 tn?1297478990
That is really interesting.. we have a mystery in my family too..

About 2 years before I starting having severe symptoms...my sister went through a severe bout of neurological symptoms..headaches, dizziness, trouble swallowing. tremoring, and then her jaw and tongue stopped working properly so that she could barely speak (everything word would be a long stutter). She had an MRI and nothing came of it but I don't put a lot of stock in it b/c my NL said nothing came of mine and it was b/c he chose to ignore it. Anyway, this went for several months and they started telling her it was in her head....finally, she left the place they were living in and she started to get better. We thought it was the mold they found in the house but she still has a lot of residual effects. So when I got diagnosed we wondered...but the same question, can you get better from it? I figure if it is it then she will probably experience another episode...
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Avatar universal
My son had a MRI when he was 3 to check and see if he had a tethered cord.  That came back fine but that is when they detected a Chiari Malformation Type 1.  He has never had a symptom and has had yearly MRIs for the past 3 years with no change.  We just went to his neurosurgeon (who specializes in Chiari) yesterday for the results of last week's MRI and he said it looks as if he is outgrowing it.  He put last years scan up next to this year's scan and you could see were there is less crowding around the spinal cord.  I questioned the angles for which the scan was taken and he showed me serveral markers that proved it was the same angle.  I am still in shock and probably will be until the next MRI which will now be in 18 months.  I'm hoping that there is even more improvement.  He said that there is still a lot to be learned about Chiari.  He has had a patient that was in a car accident and had an MRI detecting Chiari and then a year later it was not there.  As for my son, he claims it is associated with his natural growth.  As long as he has no symptoms I am going to stay positive until that next MRI.  Good Luck!
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620923 tn?1452915648
COMMUNITY LEADER
That is a large herniation to just disappear.....it can be the angle or slice they r using, but at that size I can't see how they r missing it.

Is ur dr a chiari specialist?

"selma"
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Avatar universal
The initial report (from my second MRI) said, "Chiari Type I malformation with herniation of cerebellar tonsils 1 cm below the foramen magnum bilaterally.  

It also says: "Both cerebellar tonsils are herniated inferiorly 10 mm below the foramen magnum.  The brain stem appears normal.

This is from November, 2007.  I've had 3 MRI's since then and this is the first time anyone has said anything about the Chiari being "gone."
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

There r several things that could be going on here. The manor in which the MRI was done the first time, may have been altered......the strength, angle and slices taken....if this is changed it can appear that the herniation grew or shrank.

I have heaard that if a patient has tethered cord and it is released that a herniation can retract.....but to just dissapear.....I have not heard of this.

Do u have a chiari specialist?

Chiari malformation is when the skull is too small for the cerebellum...and it is forced out....the part of the cerebellum that hangs below the foreman magmum is called tonsils.

Do u have the report from ur MRI which has info on ur chiari?

"selma"
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