OMG sooo confused and upset

[Smiley421]

First off I would like to say what a great source of information and support that this site has, love it!  My daughter is 19 and was diagnosed with hypothyroidism at 15. We were a little shocked because she is always moving, literally works out everyday since 14, was on varsity water polo and swim all through high school with really no fatigue and very thin. They put her on Levothyroxine .25 and never really said anything else so we never followed up on it, I really didn't see it as a big deal and there was nothing urgent said on the drs. End of it just that she had it and take the meds and she'll be good, which she was. Then fast forward to Oct '11 when she started complaining of headaches, shortness of breath, her body feeling really heavy and pressure behind her eyes like popping out. Slowly every month new symptoms arose like fatigue all the time a weird tingling sensation in her head and really bad reactions to fluorescent lights they made her dizzy, sick, nauseated, and faint.  Fast forward again to today her symptoms are so bad she won't drive she says she goes into a haze and it really scares her she pulled over so I could get her, trembling , chest pain, tunnel vision, ringing in ears, tunnel vision ect. 24/7 she has dizziness, press. In head, feeling sick, fatigue. In April '12 found out thyroid out of range dx moved her to .50 last blood result test tsh went back to normal range but found out she has Hasimotos. Still having every symptom plus more dx ordered MRI came back with cerebral tonsil ectopia 5mm. Neurologist wouldn't see her referred her directly to NS  who we are waiting to see (not a CM specialist). Just so confused bc no symptoms first 3.5 years then boom w/n last 7 months pure craziness, all she keeps saying is I feel like CRAP 24/7 I want to feel like I used to there is something wrong with my head I can feel it. So what is it should I see a chiari specialist after the NS? Just so much info sorry I wrote so much just trying to give some background. She has always had speech problems noticed in preschool and in speech therapy thru 8th grade.

[selmaS]

  Well u do have quite the list like many of us, it is more like a manifesto then a list.....

As for the NS< have u seen more then 1 that is a chiari specialist? So u can compare?..ANf FYI- not all on the list r true Chiari specialists, they r on the list bcuz a member here went to them and was treated and liked the Dr, the list is there for u to use to research and compare...not to just go to the Dr...so do research and compare.

Make sure u r comfortable with the Dr b4 u go forward with ne treatment.

[Smiley421]

Thank you for responding.  Yes he is on your list of recommended specialists that's how I got his name, it was by luck I got in so quickly to see him.  The other NS I am seeing is listed as a Chiari specialist and I did much research and asked many question before making an appt. and felt confident with the choices we made.  The other 2 I saw were NS who had some knowledge of it but didn't specialize in it.

Yes it has been very frustrating I feel like I move forward then ten million steps back, I can't stand it.  At  first the two drs were generally along the same path until the new MRIs were done, then they went opposite.  I'm so so so miserable, I feel so awful everyday, I'm 19 and have been in my house all summer, when I try to be normal and just do simple everyday things it just starts getting worse n worse.  I already have to skip school this semester bc my college is 35 miles away n I can't drive.  It just plain *****.

I have had multiple blod tests done that has ruled out a huge variety of other things.

Symptoms are:

Head pressure (dr. Who wants to do surgery had me try Diamox to see if it would help and it didn't)
Head pain starts in back of skull and immediately wraps to both sides of head
Eyes hurt/feel like popping out
Jaw pain
Have trouble swallowing feels like something stuck in throat blocking it
Dizziness-24/7
Cheeks hurt when smiling
Tingling in face, hands feet, in head
Bad neck and shoulder pain
Fatigue
Legs are tight/ restless leg
Pulling sensation
Hands tremoring
Chills
Chest pain
Heart palpitations
Sharp pain in left side of head above ear like someone stabbed me
Ear ringing
Body feels heavy
Slurry speech n forget what I'm saying n can't find words n I know what I want to say
Can't concentrate
Can't remember things
Loud noises bother me
Lights bother me
Can't focus
Blurrry vision/Tunnel vision
Itchy

I'm sure I'm forgetting some but that covers it pretty good

[selmaS]

  Hi.....refresh me on ur symptoms u r dealing with now....

and is this new Dr a chiari specialist...just bcuz he took time to explain and knows chiari does not make him a specialist.

This is something u want to be sure of, as he said it is not a cure or a fix....and u can develop post op issues that can make u feel worse.

I am not saying not to have surgery, just make sure this is the right Dr, and that it is the right thing for u and all related issues have been ruled out first.

U can find all sorts of opinions, ask 10 Drs u can get 10 diff answers...it is crazy, this is y I say make sure, and see that it is a true chiari specialist, if so, compare with a Dr of the same caliber so u can compare Drs of like minds.

What ever u decide  do keep us posted : )

[Smiley421]

Hello to all this is Smiley421, I know my mom originally had posted regarding my condition and I have been following it with her and we have appreciated the input and guidance.

We have not written in awhile but have been reading posts to help us through these past months.

As of today I have been seen by 4 NS and today saw a NL. I also have finally completed my CSF Flow and the more comprehensive MRIs of the cervical,  Thoratic , Lumbar and different splices of my brain.  My original MRI showed a 5mm herniation and the current MRI  has stated a 6 mm herniation, no syrinx, no tethered cord, but minimal posterior CSF Flow.  I still have every, if not more symptoms, that were originally stated. The NS I'm seeing at Scripps confuses me and my parents, she just sits there and stares at me and says she just doesn't get it, she says there is good CSF Flow my husband then states to her, "so your saying her CSF Flow is good and no problems there, is that correct?"  she hesitates and says NO that's not what Im saying there is a problem , as stated in the report, but I just don't know. Then she sits with her head in the palms of her hands looking down in silence then pushes back in her chair staring silently at me then says I just don't know.  This is not comforting g to my parents and myself and she continually compares me to her other patients who she says has the same symptoms I do and they had celiac disease, it could be that she says, I bring out my labs and say already been tested and it's negative, then she gets frustrated. She then gets me into her NL , who I saw today, OMG he says I have chronic migraines and my symptoms have nothing to do with Chiari, he says my 6mm is nothing and that isn't considered Chiari.  I asked him if the perscriptions you put her on get rid of the headaches what about all the other symptoms, he says I don't know. He stated I'm not a Chiari specialist so I say then how can you state that my symptoms aren't Chiari related, no answer back. It just got worse as the appt. went on.

The other nuerosurgeon I had seen on Tuesday and he said after reviewing the new MRIs and the CSF Flow and going through my main symptoms he had decided decompression surgery was the best solution, he listens he goes through the MRIs with us in detail and also explains the way EVERYTHING  works within the brain and spinal cord he takes over two hours with us and it really helps us understand.  Believe me he hasn't jumped to the surgery word quickly. He has even said he will talk with my GP and make sure all bases have been covered before proceeding and he is having another NS and radiologist review my MRIs, since they were done elsewhere. He was also very open with me saying this surgery might not be a fix all or it could be, he just can't guarantee anything, which we understood from reading stories from others on this forum.

Have others been to a NL and been diagnosed within 20 min with chronic migraines and perscribed meds right away?

After much discussion my parent and I have decided for the surgery if upon talking to the second dr. He is still ready to go after the re-reading of the MRIs and talking to my GP.  It just amazes me the differnce in options of some many drs. In the same field.

[geebug]

I have that same feeling sometimes.  Usually, when my balance is off, I fall to the left, but occassionally I feel that backwards pull.  For me it seems to happen when I've been doing something active - walking, running, etc. - and I stop suddenly.  

[selmaS]

  I am glad to hear a US is pending....and all the other testing is being done....

That seems to be a typical feeling with all of us I do believe, I also feel back more then front....it is weird....

Tell her to make note of what she was doing when it happened, type of lighting she was in, well lit, dimly lit, florescent lights, etc...and what she was physically doing prior...oh and type of floor...black and white checker board floors or dark and light of ne color really can affect our balance....

But this may help find if it is a trigger out side causing it or what she is doing....

[irislita]

i have the same thing...i dont know if balance is just left right...it affects the stability in total of the body...i do get a strong pulling feeling in my legs and my floor is literally bouncing...losing balance is really bad.makes you so insecure :(( oh ur family is in my thoughts. addresse anything in this forum.U R NOT ALONE!!!

[Smiley421]

When the dr. Rechecked her tsh she did do the other tests mentioned and I believe it was her TPO that was 1,966 which according to the dr. Was really high and I don't remember what test it was but also really high at 680 and that's when she told us she had hashimotos . I will check back I believe she did order the ultrasound but wanted to do the MRI first bc so concerned with the dizziness and headaches that won't stop.

Sorry another quick ? She said today that something was really bugging her she says she feels like something is pulling her backwards kinda losing her balance, now I have heard being pulled lft to right but not backwards, any thoughts on that?

[selmaS]

  Well with those with chiari we get an auto immune thyroid condition called Hashimoto's and with that u check more then just TSH, bcuz it is possible to have the TSH in normal ranges all while still having thyroid symptoms.

The free T3 and free T4 and TPO antibodies along with the TSH must be checked as well and the ultra sound of the thyroid itself to see if the nodules r increasing in size.

  I had the very sore spine for yrs, during that time I never really had the urge to go to the bathroom and when my spine got like that I could barley stand up straight...but once I released my bladder I would feel better.

My NS said  this is bcuz I have a neurogenic bladder due to also having tethered cord, which is related to chiari.

Make sure they MRI her complete spine to rule this out as well as syrinx's as they can form ne where on the spine, many Drs only look at the cervical spine as it is the weakest part of the spine and most likely place for a syrinx due to injury to be found.

A CINE MRI should be done to check for a CSF obstruction and to check for over crowding.

Also make sure they check her for sleep apnea if she wakes up gasping for breath, I mention this bcuz many with chiari may have this, and it can account for the sleep and fatigue complaints.

Tethered cord should also be ruled out, disk issues, ICP, ehlers-danlos, all should be ruled out b4 surgery is considered.

All vitamin and mineral levels should be checked, but the ones that really r an issue Vit D, B12, magnesium and potassium.....


Go to all Dr appointments with an open mind, expect they may say no, and say  that the chiari is not the reason for the symptoms...this is y we do suggest u see true chiari specialists and see a few to find the one that is best for u and ur DD. If he says no...just research Drs from our list and go from there, I went to several b4 I found my NS that eventually did my surgery....as long as her health is not being compromised, take ur time getting the right dr is key.

[drewlevas]

I have pain in my back like that and I had an MRI that reveal 3 large syring.
So I would say that she need an MRI of the spine.

[Smiley421]

SelmaS-  Thank you for the information not sure what could of triggered it, she wasn't sick during that time period maybe a little stressed or could her thyroid going out of whack and above the high normal do it? We were never told to do labs every 6 months for her thyroid until all this happened. Her tsh is now in perfect range but like I said the dr.  Ordered the MRI bc she was confused why non of her symptoms are subsiding, she literally feels a majority of her symptoms 24/7. I told my DD to just let me know when one goes away bc she's tired of me asking everyday how she feels, I know I should stop but can't help it this is just so upsetting, my once vibrant, fun loving , very active daughter is a shell of her old self.

And I agree I will have my daughter get on here so she can see what others go thru I did tell her about some stories and how she's not alone.

Another quick question she says her back is so sore like unbearable doesn't get any sleep. When I ask her where the area is directly on her spine from the bottom up but at the top her shoulders and neck are also, so do u know what that could mean?

Re the tests should I ask that of the first nuerosurgeon I see? and if he says no then what?

[selmaS]

  Hi and welcome to the Chiari forum.

I wanted to address the no symptoms for 3.5 yrs...first of all Chiari symptoms cycle so u can have times when they flare up and then calm down...and ur DD may have had symptoms all along, but diff ones at diff times and may have considered how she felt as "normal" bcuz she always felt that way or attributed it to something like over doing it, or being sick., so when the symptoms pass, they dismiss them and forget about them.

Ur DD may have had a trigger to cause her symptoms to flare, it could be stress, a fall, or being in a MVA...nething even a cough can do it.Look back to see if something may have triggered her symptoms to worsen....and do make sure they test her to check CSF flow to look for obstruction, and also check her for a syrinx, tethered cord, sleep apnea, disk issues,ICP, and ehlers-danlos.

Many of us do have related issues, including Hashimotos thyroiditis , with that we can switch btwm being hyper to hypo...so, she should have blood labs every 6 months as well as her thyroid ultra sound done to check the nodules to see if they r increasing in size.....

U may want to have ur DD post on here as well, although u r doing well in supporting her, and advocating for her, she may want  and need to talk to others that feel the same as she does so she does not feel so alone.

  neway we can help, let us know : )

[geebug]

Wow.  Any doctor who doesn't want you researching and educating yourself about you own (or you child's) condition is, in my opinion, one to run far, far away from.  Some docs think it's perfectly fine leave out or gloss over certain details to avoid upsetting you.  I think that's ridiculous.  You need to know exactly what you're facing, the good and the bad.  

You need to be reasonable about your research - stick to reputable sources, know when you need to take a break, etc.  But don't do your own research?  I think not!

And now that I'm done with that little rant, I want to wish you all the best.  I hope you're able to find a specialist soon.

[Viva001]

"Don't search the Internet"?  Lol, some doctors are really scared that they're losing control.
My NS told me to do my own research, as surgery was my decision.  I found a lot of answers right here too.

Good luck to you!

[Smiley421]

Thanks to everyone for sharing your experiences and giving us advise and support.  My daughter was diagnosed last week and I was told please don't search the Internet on this but couldn't help it but I went straight to your form and it really helped me in starting to cope with this and understand it.

I read this forum for a week before posting and I truly feel for everyone who is going thru this but very much appreciate everyones willingness to share bc it helps newbies like my daughter  and myself.

I have already reviewed the lists of specialists and I do strongly agree that my husband and I only want the best for our daughter and that's what we will do.

I'm sure I will posting more for help during this journey.

[SilentSong101]

Welcome to the Chiari forum! I was also 19 when I got dx'd with Chiari (thats nearly four years ago - crazy!) I admire and appreciate that you are seeking out answers and help for your daughter - honestly I love that!

I would recommend seeing a specialist - it really does make all the difference. My first NS had heard of Chiari, and even done the surgery multiple times, but even still it was like night and day seeing the specialist - my questions were answered before I had to ask, and he was aware of what he needed to be aware of, and checked me for related conditions without my constantly trying to push to do that.

I know it seems odd that she didn't have symptoms for so long, and then all of a sudden craziness...but it is not that unusual. While many of us experience symptoms our entire life, a large portion of us don't - or the symptoms we do have are just considered normal and we don't even recognize them as symptoms - the more I learn about this condition, the more I realize that. It is not unusual for symptoms to just pop out of no where and take over - sometimes for no reason, sometimes something triggers it. For example, my symptoms got increasingly worse after I was in a minor car accident at 16.

Keep fighting for your daughter, and as I said before I do recommend seeing a specialist - it has made all the difference for so many of us. You guys can do this!

[Marybz]

I had minimum symptom for many years, but last year the symptoms became overwhelming and unbearable.  I feel your daughters pain and know how scared she must feel.  Youve come to the right place for support and guidance.  I had 5mm ectopia also.  I am post-op 3 months and have relief of a lot of symptoms, but some of my nerves may not regenerate, as I waited and ignored symptoms for so long.  She needs to see a NS who specializes in Chiari.  She is too young to have to suffer this way. She has a congenital defect that can be corrected. I hope she gets some relief.

[ChiariWolf]

When we go to see a Dr. any Dr. YOU are the customer. The Dr. is not there to do you any favors, he is there to collect a paycheck. So lets face it his only real concern is collecting the paycheck.

That said, why pay a NS who doesn't specialize in Chiari for even one visit? Fact is even if he would operate, don't you want the BEST for your Daughter? Of course you do, so my advise would be to demand your Dr. give you a referral to a Chiari Specialist. Don't trust your Dr to tell you who that is either because frankly ~ Most likely he doesn't know. We have a list of DRs here on the forum or if you don't see one listed there write back to the forum here and no doubt your friends here will try and help.

No Chiari DX yet? You won't get that DX until you see a DR who knows what it is and is willing to treat your daughter. A Chiari specialist can either diagnose CM or tell you no its XYZ but he will know what he looking at to make that determination.

JMOs I do hope your Daughter can find some speedy relief.

CW

[irislita]

Ur story really touched me and i could feel with ur daughter.i have a lot of symptoms in common and loads of more.i am now about 8months post op and soon seeing a specialist as i am dealing with a lot of unexplainable stuff still.so my recommendation is get a specialist.there are many ns willing to operate out there,but only a few running all the test u need as chiari can have quite a few related issues...i have seen so many doctors in this year and non really could help me...so please try to get a chiari specialist.welcome to this forum...anything u need to know...just feel free.this forum family is my biggest rock in the fight

[Smiley421]

Thank you so much I really appreciate it. I'm in the process of retrieving all records from dx and ER visitsalong with MRI. My DD hasn't read this forum yet but I'm going to have her read others stories with me so she can see she's not alone and there is support. She is very strong and determined that's for sure as bad as she feels she has her beautiful smile on her face.

[linnielou232]

Welcome, and so sorry to hear your DD was diagnosed with Chairi, but you have come to a great site for info and support.  We all suggest a specialist who deals with Chairi because there are a lot of DR's out there who don't really know much about this.  I suggest that you request a copy of all of her records so you can have them on hand.  For me I actually went to 3 NS before I found one that I felt good with.  If you scroll down they have a list here that will give you direction on NS that others have recommened.  As others say it is not a referral list.  It is a list that others have had and they were happy with the results.  I am happy that your daughter was persistant enough to find out what was going on.  Now you can find your answers you need sooner.  Also want to say you and your DD (dear daughter) are not alone.  We are all here to help the best we can.

Linda :)