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Am I dealing with Chiari?

Hi Everyone!  I'll try to keep this as short as possible, but it will still be a bit lengthy.  Sorry!  :)

When I was in high school (14 years ago...good grief, how has it been that long?!) I had an injury to my head/neck, but I wasn't aware there was any real damage until a year later when I was having migraines with neck pain almost daily, and I was unable to look down or turn my head much to either side.  A trip to a chiropractor and some x-rays revealed that my neck had started to curve the wrong way.  I had many, many trips to the chiropractor over the next several months and the symptoms did go away with treatment, for the most part.  
Over the last couple years, I dealt with frequent headaches again, sometimes with neck pain, but only an occasional migraine, which seemed to be brought on by sleeping on my neck wrong.  I assumed it was that old injury coming back to haunt me.  
In the last several months, I've been experiencing neck pain at the base of my skull, which seems to shoot up the right side of my head, across my forehead and behind my right eye.  I've had 3 migraines in the last month, with nausea and occasional vomiting.  I finally got tired of dealing with all this and my PCP referred me to a spinal injury specialist (still assuming old neck injury here).  He ordered x-rays and MRIs of my brain and cervical spine to see what was going on.  At the follow up, he said the results came back looking fine and prescribed me something to take to try to prevent the migraines, and recommended looking into massage therapy for the neck pain.  When I got my copy of the MRI results, I noticed a small note at the bottom stating, "Cerebellar tonsils are low-lying" and "Impression:  cerebellar tonsillar ectopia.  Otherwise unremarkable MRI."  I had no idea what that was so I started doing some research and found this page.  The MRI results don't state how far the cerebellar tonsils have descended.  Would this actually classify as Chiari malformation?  
Thankfully, I wasn't happy with the answer I got from the spine specialist and my PCP graciously referred me to a neurologist, but my appointment isn't until October 12th.
Other symptoms that I've had that may or may not be related, as they don't always coincide with a headache:  a crawling/stretching sensation across my forehead, dizziness/light-headed, occasionally getting hot and shaky when nauseous, occasional pressure and/or heartbeat in my ears, eyelids twitching, slight memory problems and ALWAYS being sleepy (as in- I'll fall asleep if I hold still for more than a few minutes).  
Any insight anyone can give would be most appreciated!  I'd like to be as well-informed as possible for my neurology appointment, but most importantly, I'm frustrated and tired of just not feeling well 24-7.  Thanks so much!!!
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620923 tn?1452915648
COMMUNITY LEADER

    Well that is just it...since we had it all from birth and the symptoms cycle and change....how are we to know something is off?....we do think it was from that last cold or I over did this past week...etc....it is our normal...we get accustomed to it as well as adjust to it...

I had a drop attach in May of '07 that left me with a really bad sprain of my left ankle and I tore the meniscus in my right knee....I required surgery for my injuries....2 to be exact. My knee surgeon felt I might have lupus (which was in my med file) as my PCP said I was borderline for it....so the surgeon sent me for more testing....it was that testing that found the Chiari.

I went to a Chiari conference and was privileged to hear the countries top Chiari specialists speak on Chiari and ALL the related conditions. I joined this site just after my DX and b4 the conference so I was learning all I could...I am not a medical professional  either...but no longer had faith in any that did since I had been going to Drs since I was in school...I was told "growing pains" to migraines....sigh...anxiety....sent to a shrink....sigh

It was the info from this site, the other members and what I learned at the conference....it helped not only me but my hubby understand what kind of Dr I needed to see.

No EDS is not a blood test....but it could indicate more invasive testing such as a biopsy depending on symptoms...there are several types of EDS...so the Beighton Scale /Score is one way to determine hyper mobility BUT EDS is not just hyper mobility and it is possible to be hyper mobile but tight and not flexible...I know that doesn't make sense but once you learn how EDS effects the body it makes more sense then not. I do not have stretchy skin but my sister does...but she does not have an EDS DX yet...lol...

My PDF has helped me big time and I have no regrets....it took time and patience...the one thing too many do it 1- go to the first Dr that offers surgery and a fix or cure....2- have the right Dr but rush to get back to a "normal" life.

  I still do not drive or have a job....but I am doing better now then I was b4 surgery....granted I was working and driving then.....but I hope to get back to work soon...out of my home....driving may not happen again as I have depth perception issues and I was dealing with them b4 my DX just had no idea really what was going on....I hate the independence lost , but would not want anyone else to get hurt bcuz I want to drive.

So many complain that Chiari changed their lives...but in life we should have changes and challenges to keep us alive and alert...lol...had I not developed Chiari symptoms to the point I did....I might still be working a job, with so much stress....I was hating it....so a change was needed...and I found things I never would have tried to do b4...I paint, sew...all sorts of crafts...I enjoy all  of it and if I can find a way to make money too...then the change was well worth it.
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1 Comments
I admire your positive attitude with it all!!  It's hard for me sometimes to not get frustrated or depressed about all the symptoms.  I just got back from visiting family in Florida, and it was my first time flying.  Most of the flight was ok, but landing both times set of bouts of vertigo and nausea, ugh.  Not a pleasant experience, but still better than an 18 hour drive, I guess.  I just hate when my life, particularly the things that should be enjoyable, are interrupted by my symptoms.

I went to see Dr. Gardner, a NS with UPMC before I left.  He says my tonsils are herniated about 10 mm, and that my symptoms are probably Chiari, but he wants me to continue with the medications the neurologist gave me to see if they help before we discuss surgery.  I go back for a follow up MRI and visit with him in 6 months.  I hate the prospect of waiting that long, but I have to admit that I'm glad to be dealing with a NS who doesn't seem knife-happy...

I hope you're doing well!  :)
620923 tn?1452915648
COMMUNITY LEADER

  Hi Jess...I remember the first few NS's I saw...one said I had Chiari, the next said I didn't....and the next one after that said I did but it was above him and could not offer a referral of whom to see next....all were supposed to be "experts"....

Yes, fatigue is very common with Chiarians....as well as for those with EDS as it is also a symptom of that too.....

I know how you feel...I was always happy to be put under for a tooth extraction as I felt refreshed after waking from that .lol......being tired and then having periods where you can not fall asleep ....insomnia is also a symptom.

As far as your PCP doing a referral ...it depends on your INS.....call them to see if you need a referral to see a specialist. Always check with your INS carrier as they can tell you exactly what they need....BTW- even with a referral they can  refuse to pay it late...read the small print....I never had it happen but it does say it on the forms......

You sound like the rest of us with Chiari, tired of being tired..tired of no answers.....just tired....lol...
Helpful - 0
1 Comments
So, SO tired.  At least I'm in good company!   :)   And tired of no answers - oh goodness, yes.  I haven't discussed my issues with many people other than family and my closest friends, because so many of these symptoms are vague and I don't think they'll really believe something's wrong.  I even wrote it off for years as one insignificant thing after another, so I can't expect someone who isn't dealing with it to think it's all connected.  I've wondered if my PCP is starting to think I'm a hypochondriac now that I'm on the hunt for answers, but at the same time, I'm tired of it all and don't really care, lol.  I just want answers that make sense.

With all the conflicting diagnoses you had, how did you decide when you no longer needed another opinion and that the Dr you were seeing was right?  I have zero medical training, so all I have to go on is my research and whether or not I think the DR I'm seeing at the time knows what they're talking about...I really hope to not be going in circles for the next couple years...  

Is EDS generally diagnosed by blood work and a physical?  I need to get in touch with my Dr about it, since I know some autoimmune disorders run in the family, and I do have several of the symptoms of EDS, right down to the flat feet!   My skin isn't super stretchy, but it does stretch some, and is super soft and thin.  I've given myself bruises just scratching a bug bite.  And my skin always takes forever to heal, whether I have a scratch, burn, anything.  It's annoying, haha.

I've seen that having a PFD doesn't always alleviate symptoms, especially if it's been left too long and permanent damage has been done.  Did you find that your PFD helped with any of your symptoms?

Thank you so much for your patience and advice!!!  It is such a relief to chat with someone who has been there!
620923 tn?1452915648
COMMUNITY LEADER

  No worries, do keep us posted....Good luck.
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1 Comments
Hi Selma!  I just wanted to let you know how my neurologist appointment went yesterday.  I met with the doctor and we went over what I assume is the standard physical exam and questions (lots of them).  She reviewed the MRI images of my brain and neck and reviewed the reports and said that she does not believe the tonsillar ectopia is the cause of my symptoms.  She said that she believes that my issue is the standard chronic migraine, and prescribed me four different medicines to try to help prevent and treat the migraines.  One I know is Imitrex, but I can't remember the rest of them at the moment and I'm not home to look at the bottles.    The one medicine is to be taken daily and the others are as-needed.  I wasn't surprised to hear it, but it was still disappointing anyway.  I'm not terribly fond of medicines, and I hate the idea of just treating the symptom instead of finding the cause...  

I do however, have an appointment with Dr. Gardner at UPMC on the 18th, so I'm much more hopeful for that appointment, even though I've heard it could turn into an all day event.  I scheduled the appointment with him a couple weeks ago, as a second (and better, I'm sure) opinion.  Any helpful hints for that visit?  And do you know if I need to have my PCP send a referral over to make sure its covered by my insurance?  I know I didn't need one to schedule the appointment, but I wasn't sure about it with regards to the insurance coverage.

And another question - is it common for those with Chiari to be utterly exhausted 24/7, or is this something I should be looking at in addition to the headaches?  I am just so tired all the time, and it's so frustrating.  I wake up in the mornings and never feel rested, and I struggle to stay awake for my commute to and from work.  I even catch myself falling asleep at my desk.  I'm so tired of being tired, ha.  
Thanks for any advice you can give.  Hope you're well!
620923 tn?1452915648
COMMUNITY LEADER

  No, it is a possible reason....it is also possible you have an incorrect DX.

Many Drs will call it low lying tonsils if the herniation is not 5 mm's or more, However that is not a correct assessment of what Chiari is, and many Drs do not know how to determine Chiari .

Any injury can also trigger symptoms to flare so we take more notice something is going on....but if it is Chiari and congenital, it is possible you have had symptoms but did not recognize them as such.

Along with Chiari we are prone to auto immune conditions and connective tissue disorders so when you have your thyroid checked ask for a full auto immune thyroid work up...meaning they should look at your free T3 and free T4 and TPO antibodies as well as your TSH.most  times they look at TSH only..

And an ultra sound of your thyroid is also very helpful to rule out Hashimoto's thyroiditis...by looking for nodules.

Clinics with good reputations are fine...but look at what the rep is for...usually it is not for Chiari...so no matter the good rep you still want to go elsewhere where they treat nothing but Chiari and  related conditions.

Our Drs list is not a referral not an endorsement for those listed it is only meant as a starting place to research the Drs yourself....the list is compiled by members here of Drs they have been to, treated by and liked....that does not mean the Dr is right for you and having the right Dr is key !

WEST VIRGINIA

Dr. Rammy Gold
Parkersburg, West Virginia

PENNSYLVANNIA

Dr. Bejani
Pittsburg, PA

Dr Gardner
UPMC Presbyterian Hospital
Pittsburgh PA

Dr. Alfred Bowles Jr. MD, FICS
Director of the John P. Murtha Neuroscience and Pain Institute
Johnstown, PA

Dr. Donald O'Rourke
Hospital of the University of Pennsylvania
Philadelphia, PA

Dr. Mark Iantosca
Penn State Hershey Medical Center NEU
30 Hope Dr Suite 13
Hershey, PA 17033
(717) 531-0003 (Office)

Be advised you may have to travel to get to the right Dr for you.

Know you are not alone and let me know how else I can be of help.
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1 Comments
Thank you so much!  I will be making notes and taking to my PCP.  I am certainly going to ask her about the autoimmune thyroid testing.  My mom has a connective tissue disorder, so I imagine it would be worth checking into.  I know that when she ran the standard blood work at my check up this spring, TSH was the only one checked.  I will be looking into the doctors in Pittsburgh, they'll be closer than Parkersburg for me.  
Thank you!!
620923 tn?1452915648
COMMUNITY LEADER
JessM_17- Hi and welcome to the Chiari forum.
Low lying tonsils and Chiari are 2 different things BUT the symptoms are the same and many times treated the same. The difference is with low lying tonsils they are displaced due to blunt force trauma to the head and neck area...while Chiari is the malformation of the skull leaving it too small and that forces the tonsils to herniate..once the tonsils herniate they obstruct CSF flow....surgery is done to create more room to allow the CSF to flow . Some with low lying tonsils can have the tonsils retract on their own...but that doesn't always happen.

May times we can be told we have low lying tonsils because the herniation is less then 5mm's- as many Drs are not aware that the herniation does not define Chiari but still use it as a way to determine a DX.

Hang in there  and push for answers....get more testing and seek out a true Chiari specialist....we may be able to help with Dr names for you to research...if interested let me know and where  you are...be advised you may have to travel to get to the right Dr.
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1 Comments
Hi Selma!  Thanks so much for your answer!!!
So if I'm understanding you correctly, the displacement is mostly likely a result of my old injury?  
Thankfully, I have a great PCP right now and she's being super patient with helping me sort out all these issues that I've been dealing with for so long.  I hadn't really realized how much these symptoms have been affecting me until the migraines started again and then I realized that I've been having minor headaches almost every day, but I've just been dealing with it.  I've been trying to find answers to the constant fatigue for a couple years, but until now, I had doctors that wouldn't look farther than standard blood work to check thyroid and vitamin D levels.  It's insanely frustrating to hear "You're fine.  Everything is normal" when you know its not, as I'm sure you know too well!
If you can recommend any doctors or any other things that I should be asking about or testing for, I would appreciate it SO much!  I was so relieved when I started researching all this; it feels like I'm finally close to getting some real answers.  I'm actually close to Morgantown, WV so I'm hoping that there are at least some doctors as close as Pittsburgh, PA.  My neurology appointment is with WVU's Neurology Clinic in Morgantown.  They have a pretty good reputation as far as I can tell, so I'm hopeful...
Thanks again for all your help!!!!  
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