4.5mm herniation = almost normal??

[Stephiec79]

I am so relieved to have found this forum! So here's my background, and my question. 3 years ago I went to the ER for a really bad migraine where they did a CT scan. I was sent home because everything was normal. The next day I got a call from radiology saying that I needed to follow up with my PCP because my CT was abnormal...it showed that I had low lying cerebellar tonsils. My PCP said that he was sending me for an MRI to check for Chiari Malformation. All he said to me for the results were that the MRI was normal. In the meantime, he continued to treat me for migraines, depression, anxiety, had sleep studies done for chronic fatigue. He sent me to a sleep specialist who is also a neurologist. Last week I asked her about my MRI and the specifics of the results because it was never explained to me. I researched symptoms of Chiari on Chiarione.org and was amazed to see so many similarities!!! Anyway, she told me that my cerebellar tonsils were shown to be 4.5mm into the foramen magnum, but not to worry because that's almost normal! I'm sorry but 'almost normal' doesn't sit well with me, especially being symptomatic.
My question is, has anyone been diagnosed with Chiari with 4.5mm herniation and does anyone recommend any specialists in Massachusetts??
Thank you!

[selmaS]

  Hi and welcome to the Chiari forum.

No worries, there are many here that have been thru this to share what we have been thru....u can read my journal as it goes thru my surgical experience.

Is the NS u r going to a Chiari specialist? Not all are, and u deff need one that is well experienced with Chiari and related conditions.....some may offer surgery with out ruling out related conditions or promise surgery will "fix" u,....if so, run out of there....

Some Drs not as experienced will look to the length of ur herniation and not how it is affecting u and ur overall health...

It is possible to have good CSF flow with a long herniation and surgery will not help this, but can cause more issues...so u need to know if u have an obstruction, and what other related conditions u may have as many of them can cause the same symptoms as Chiari. So it can be diff to know which condition ur symptoms are from.

Plus, surgery without precaution for underlying conditions can affect how u feel and heal should u  go forward with surgery.

What part of NY are u in, as u do have TCI (the Chiari Institute ) in Great Neck.

[sarahbeara7]

Id like some info about this malformation mine is at a 9.5 I'm going by what the mri at the hospital read I'm going to see a neurosurgeon on the 11th I'm pretty worried and scared about this but relieved because Im so sick 24/7.Just need someone who's been through this to talk with. :)

[selmaS]

  Hi and welcome to the Chiari forum.

U r doing fine so far with using the forum....if u have issues with navigation let me know and I will help u the best I can....it just takes time, and u will get better as u go.

Glad the forum is helping u not feel alone, that is one of the best things about this forum outside of sharing experienced and info, it is that someone else really understands and can relate....

SO u r in Florida?.....and u r looking for a Dr for the tumor?

[cmtv]

Ok I really don't understand how this whole forum works. I was googling stuff on the computer and sometimes reading these forums make me feel better. To know I'm not alone etc. Because of my Chiari, a tumor in a rare part of my brain was discovered, the third ventricle. They think it is a pilocytic astrocytoma  grade 1. Hwever, that was after long diliberations etc. Thinking about sending the slides to DFCI in Boston. I  see specialists at the USF at Tampa General Hospital.

[cmtv]

my chiari (9mm) I had my chiari decompression on May 2, 2013 (2/3 hour surgery) and then a bilateral crainiotomy on July 8 (8 hour surgery). I am still recovering from the Chiari surgery. Truly the most painful surgery and experience of my life. After the surgery I just wanted darkness and wore an eye mask. Any sounds, lights or stimulation, text, tv etc. I could not lift my neck for several days, and now we are in Nov. and my nerves are just now starting to "wake up" my NS refers to it as. The back of my head in the incision spot feels like pins and needles, but I've gotten used to it. You have to honestly, truly take it easy. No doing anything,literally for at least 8 -12 weeks. (That's generous)However, walking is the best form of recovery once you can handle it. But stay away from stimulators, I still can't get on my eliptical or  bike because of the false sensation and stimulation. Anything too fast for the brain to process can cause headaches, nausea and dizziness. Orgasms in sex caused intense pulsating and my temples felt like they were going to explode. NS said this is because when you work out and have sex your brain releases chemicals, and after the surgery your nerves are peicing back together so the quick rush of chemicals and endorphine is overload for the brain. Like writing this post, I'm done, dizzy all set. Best of Luck!!! The temporary symptoms of chiari surgery out weight  the daily symptoms of Chiari. YOU REALLY HAVE TO REST AND TAKE TIME OFF, JUST BECAUSE YOU FEEL OK DONT PUSH YOURSELF TO DO THINGS, IT WILL JUST DELAY YOUR HEALING PROCESS. I DELAYED MYSELF BECAUSE I WAS EAGER TO get back to work, live as super mom of two and wifey. (I'm only 29) I couldn't stay sitting around all day staring at the wall, so I tried to do things, small things, but DONT. RECOGNIZE THIS IS A MAJOR SURGERY AND YOU NEED TO RECOVER AND HEAL AND SLEEP

[selmaS]

  Hi and welcome to the Chiari forum.

The post u r responding to is old and the member may no longer be active....u may want to start a new thread to add to a newer one.....

Many of us that have had surgery have posted in a journal in our profile page.I have mine there, but u will have to accept a friend request in order to see my page.

I had my surgery 4.5 yrs ago and mine went well....I do not regret having it as it has helped me so much.....

May I ask, do u have ne related conditions or a CSF obstruction?

[613custumz]

I am very curious to how the surgery went.  I was diagnosed 2 years ago and I am going soon for the decompression surgery.  I was diagnosed at 9mm and I can't take the pain anymore.  I'm a 34 year father of 3 and I plan on being around for a long time for my kids.

[AJ29349]

Another piece of important information to consider.  I was told over and over my herniation was 8mm.  Finally found a Chiari specialist and he said nope, it's an 11mm.  Not only can noneducated NL and NS misdiagnose or overlook Chiari, but they can also get the measurements wrong.  

[selmaS]

Hi and welcome to the Chiari forum.

May I ask u what some of ur symptoms r?....and y ur NS is doing ur surgery so quickly?That is a fast turn around....and I wonder.Is ur NS a chiari specialist? One that is on our list?....it is always nice to have another dr's name added as a starting point for those looking for a dr with chiari knowledge.

Have u had a CINE MRI to see if u have a CSF blockage?...do u have a syrinx?...Tethered cord?...ne other related chiari condition ?

Please post ur surgery date on our surgery thread so we can post a Prayer thread for u, and please have someone post updates on ur progress : )

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

"selma"

[yusie838]

hi i had a wide range of symptoms from swelling of the feet to nausea. i am 24 years old and was diagnosed with a 25mm herniation by my neurosurgeon today. will be having surgery before the year is out in three weeks. good luck to all with this disorder

[ploink]

I have only 3mm herniation, but Dr Bolognese still calls it chiari.
Most doctors only look at the sagittal MRI view, but our body is 3D, not 2D! In my case, the hindbrain seems to wrap around the brainstem and seal off the foramen magnum like putty. I also do have symptoms, look at my profile for description and MRI picture.

[lu7997]

Right. Why not try to turn what we van into something to laugh about. Too much seriousness makes heads hurt.  Oh wait would we know of our heads hurt from that????? I think I actually forgot what a headache from no caffine or needing to eat or periods felt like.  Lol oh how I long for a period headache again. Lol.   Lol. Lol.

[Stephiec79]

lu you made me burst out laughing...thank you!!! I have had this foggy headache all day today that has had me in the weirdest mood, too...very silly mood I guess...even though my head aches!

And, remember, dont ever apologize for being in a good mood! If you're like me, I'm sure the people around welcome those moments with open arms!!!! Smiles instead of tears, right??

[lu7997]

I was laughing histerically and inappropriately. But thought of the perfect thing to asknthe docs who disclose chiari for smaller her iations........


"do you consider a man with a 2" penis a women?  No any penis makes him a man regardless of the size"


If a two inch penis can make a baby well a 4 mm herniation can cause symptoms.  


Sorry. Goody mood tonight

[anneb994]

My herniation was less than yours and I had surgery because it was still chiari even though it was a small herniation.  I saw Dr. Peter Black at Brigham & Womans in Boston....Hope this helps.

[jessbee82]

wow i cant believe this.  i have a 7-8 mm herination which seems to be alot more than all of you. i of course was told for 5 years that my symptoms are all caused by emotion.  pfft, i hate being treated like i know NOTHING about my body.  i have been to 3 doctors and no luck in sight so far...but i wont give up ;)

[Kathleen56]

To say you have a 4.5 herniation is like saying you are just a little pregnant at 3 months. The cerebellum is supposed to be 5 mm above the foramen magnum, to that makes you 9.5 lower than it should be. The text books all state the you need to be 5 mm to be diagnosed with Chiari, but they are old.

Dr. Milhorat redefined Chiari in 1998, looking at the shape of the skull, finding people with Chiari have a small Posterior Fossa (back of the skull) pushing the brain downward.

Dr, M and Bolognese have also found that we can have Tethered Cord at the base of our spine. Lots of patients with a small herniation can have tethered cord without the chiari. Once the cord is released at the bottom, the brain/tonsils return to their home in the brain.

Unless you have many tests the doctor might miss other things that can accompany Chiair. To learn more you can go to this web site:
http://www.chiariconnectioninternational.com/

[Jennyfoo]

Oh, and I forgot to mention that my herniation is only about 4-5 mm. It's clear as day on my MRI scans, that I have hindbrain crowding that is cutting off CSF flow behind my cerebellum. My cerebellum is smushed right up to the bone. There is no room for CSF. You can clearly see the CSF line disappear. I looked at all angles of both head and cervical, compared to chiari MRIs online and normal MRIs online. I think it's pitiful that a neurologist would miss it.

[Jennyfoo]

I went to my neurologist with headaches, parasthesia, rt side weakness, muscle spasticity, dizziness, vertigo, tinnitus, extreme fatigue, neck pain. His main concern was possible MS. My MRI was "normal" according to him. I had ordered the report and had 2 weeks to research before my follow-up.

He said I simply have a migraine/headache disorder. Bull#%@&!  Does a migraine disorder cause 24/7 dizziness, vertigo, and nausea, even without a headache? The guy was a complete idiot. He did look in my eyes and said he saw no evidence of increased intracranial pressure. 2 weeks later, I had my yearly appt with my Opthamologist though. She found optic nerve swelling which she attributes to increased intracranial pressure and she is recommending surgery before it causes irreparable damage to my optic nerve.

I really enjoyed calling my neurologist's office and canceling my follow-up. I told the receptionist to please give the dr a note to put in my chart, that I'd been to an Opthamologist who found optic nerve swelling due to increased intracranial pressure from my chiari malformation. It was my way of professionally giving him "the finger" and letting him know he was wrong. It felt soooo good.

[lilmiss1999]

I know exactly how u feel. My herniation is 4.7 and I have had 3 doctors see it yet nothing furthur is being done because they don't think that is what is wrong with me. My symptom list is too long to put on here but I. Too have had a dozen tests including sleep study. I am actually in the waiting room of my NL right now. Hope she's ready for an earfull. I'm in that mood today. Send your info to a specialist. I did just have not heard back yet. Hopefullly this week. Hang in there....I surely am. It has to get better than this.  THIS IS NOT NORMAL! I want my life back

[Stephiec79]

lu7997- I had to lol when I read your post! HOW TRUE!!!! "Let's treat this sx...let's medicate for this...this sx, well, I never heard of such a thing...you're depressed, overweight...your overweightness is causing sleep apnea which is causing fatigue...you're having neck issues? oh, it's a pinched nerve!" I am SO sick of med changes and random tests that all come back fine! Until I heard that there was an actual number to the descent of my tonsils, I was starting to think I was neurotic! I've already contacted a NS whose name I got from this site, so I will keep posting!
Thank you!!!!

[lu7997]

Mine is 4mm and I am scheduled for surgery in April.    I know for me with it being small it took a lot longer to find the right path. But it is out there.    I was also classified as normal and told chiari is asymtomatic and everything was coming from neck sprain, carpel tunnel, ear crystals, migraines, having children, being over weight, being depressed, and stress.      All at once. Because yes 8 things makes a heck of a lot more sence than one thing that ibwas already dx with.  

Good luck and u are not alone.  Don't give up

[*Stormy*]

Welcome!

"Almost normal" is NOT normal...I am so glad that you checked this out for yourself...just another bit of proof why we have to advocate for yourself!!!

Just an encouragement to get those MRI scans to a specialist...I can't believe that a NL would treat you for all those issues and the light wouldn't dawn on him!! Don't go to a NL find a Chiari NS to look at your case.

My herniation wasn't huge either but it caused a whirlwind of symptoms that eventually became debilitating b/c my Cm was ignored.

I hope you find that specialist..keep us updated!!
Carolyn

[selmaS]

Hi and welcome to the chiari forum.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
This is a link to a thread of chiari drs...please research all drs u choose to see....
..many NS and PCP's got a crash course on chiari and most of the info taught in med school is old.NS's that deal only with chiari and chiari related conditions have followed or participated in research to know u do not need a herniation at all...so if ur herniation is measured at 2mm it is still considered chiari, as the definition is the mis shaped skull being too small to contain the cerebellum, blockages in CSF flow can force the tonsils down and onto the brain stem causing compression  and symptoms.

So if ur skull is mis shaped u have chiari, and u can have chiari with no symptoms....if u do not have the overcrowding and blockage.

A true chiari specialist will tell u it is not the size of the herniation that causes symptoms, but the blockage of CSF flow and overcrowding.

The list of drs here is a list compiled by the member of this forum...it is a place to start, and u may find u need to travel, u may not...but do the research on the drs....and make sure he / she is the right dr for u.

Glad to have u join us, so sorry for the reason s u had to seek us out.

"selma"