Newbie with Q's & Hope Chiari Could Explain Some things!
 

I'm new here! My name is Jessica, I'm 21 and live in Ormond Beach, FL. I have quite a large handful of health problems, but what brings me to this site is continuing my search on finding out if Chiari Malformation could be the cause to many issues. I had a brain CT done almost 2 years ago I believe, at the time I asked my PA (who I still trusted back then) if that CT would have showed if indeed CM was there! He told me yes, nothing was there and shoved me off. Yesterday I went to my moms neurosurgeon's appointment with her, I asked him if HE had ever had a patient with CM, he said yes (and seemed surprised I knew of it). I asked bout the CT, he said no, an MRI is needed. Since it was my mother's appointment, I didn't go any further. This doctor is Dr. William Lu and is a neurosurgeon, I don't have his other information with me right now... if anyone knows of him and could tell me their experience with him AND CM, please share! Anyway... When I told him of my Fibromyalgia and symptoms, he said this is most likely something wrong around my neck area. He seemed very knowledgable and honest, I liked him very much... and after being hurt and mistreated by several doctors, for me to actually LIKE one means a lot! I looked him up on google and saw someone in the Chiari forum was going to see him last year, and that he specialized in it! The doctor I spoke of above is the same! I'm very excited, I know theres a HUGE possibility this may not be the answer I'm looking for, but it DOES mean I haven't run out of possibilities quite yet! Next week I plan on getting an MRI of my head and spine scheduled ASAP. Please, please please, if you believe the symptoms below could mean CM, PLEASE tell me, or if they were similiar to yours before diagnosis.

Here is a list of symptoms I have (and can remember right now!):

-Constant headache (sometimes migraines) for over two years, saw a neurologist who put me on every medicine he could think of, his last resort was Botox injection into the top of my head, I refused.. The pain feels like pressure most of the time, its generally located in the lower back of my skull, but can cause pain through the middle of my head to behind my eyes. For many years I've 'jokingly' said I need to endure trepenation to get some relief.

-POTS w/ near syncope (been taking Toprol XL for a couple years, initially for bradytachycardia, but recently was told by cardiologist he DEFINITELY believes it's POTS and wants me to see a specialist in Ohio, I'm waiting on this for a bit.

-Severe neck and shoulder pain, bouts of extreme pain in only ONE arm... was told it's PCOS, it wasn't.

-Scoliosis
-Kyphosis (not slight) ast year I felt bumps on my spine I had never felt before, my mother agreed she'd never seen or felt them, PA once again told me it's nothing, during this time is when my Kyphosis rapidly got worse.

-My vision has become verrrry bad over the past few years, I'm 21 and cannot do anything without my glasses. My pupils have always been large, my baby pictures of freaky! Sensitive to bright light (also, I sneeze when I walk out into sunlight) Blurred vision randomly but clears up very quick. Eye Pain, achy or very sharp.

-Tinnitus
-Pressure in ears (very frequent ear infections up until teenager) Also it feels like I have to try very hard to hear things at times and I can't hear as well as I used to. No proof I've lost any hearing though.

-Facial pain for over 3 years (Do have a history of Chronic Sinusitis, though it's been many years since I've had any real sinus trouble)

-Severe back/neck pain. Shoulders & Lower mostly, but middle too.

-Pelvic Floor Dysfunction (difficulty/frequency urinating, verrrry slight urinary & bowel incontinence) Manual Myofascial therapy gave me no relief. Tens Unit was suggested, but I haven't been able to afford one yet.

-IBS since at least age 14/Hiatal Hernia (diagnosed 2006)

-Endometriosis

-Chest Pains & Shortness of Breath

-Muscle Pain. Worse in Thighs, upper arms, calves. Achy, burning, electrical. No relief from MANY kinds of treatment
-On & Off joint pain

-Mid teens my knee cap popped out for a couple years, atleast 18 times. Still have times where I can feel it about to pop out, but it doesn't.

-EBV

-hypothyroidism/goiter/autoimmune thyroiditis

-I don't feel temperatures right, I am easily hot mostly, but can be easily cold. Excessive sweating.

-Word finding difficulties or saying the wrong word or something that's not even a word, getting worse in past 6 months.

-Easily confused

-Difficulty learning new things

-Motor Skills feel more difficult to do.

-Difficulty concentrating (nor all the time) have called it ADD in order to try a couple medicines to help clear up my brain fog (Strattera, Currently Adderall)

-Obesity (entire life) have gained atleast 50lbs. in 2 years, never losing weight on diets or healthy eating w/ exercise. Current Weight:265lbs.

-Exercise intolerance

-Valvodynia

-Insomnia... it's getting very bad, I've been through many sleeping medicines. Trouble sleeping since pre-teens, maybe earlier.

-I believe vertigo, more so when very tired or upon standing. Dizziness as well.
-Fatigue

-Depression (I believe from the stress and anxiety of being ill)

-Muscle spasms and tightness

-Numbness/Tingling in extremeties

-Plantar Wort on bottom of foot (most recent, I've read on another site as a symptom that can occur in CM

-Every day nausea, used to almost never vomit, now it's a couple times or more a month, I've become pretty good at trying to keep from throwing up though.

-Very loud snore

-Drowsiness

-Muscle Weakness

-Cold Hands/Feet/Nose, sometimes clammy hands

-Possible Cold/Heat intolerance

-Mouth Ulcers
-Small round patchy rash that comes and go, 1 or 2 patches at a time or history of entire trunk covered in it.

-Skin sensations. Burning or like something is crawling on it, Pin pricking.

Most of this has been going on for a few years or longer. I honestly don't believe this is (just) Fibromyalgia. I believe the doctors I have seen have given up on finding the cause because I don't want to put any more effort into trying to help me. I have been on too many medicines to ever remember.

Here's my current list of meds:
Cymbalta 90mg - depression/pain
Adderal XR 25mg - Brain Fog
Adderal 20mg - Brain Fog
Synthroid .150mg - Hypothyroidism/Autoimmune Thyroiditis/Goiter
Aciphex 20mg 2x/day - IBS
Lunesta 6 mg - Insomnia!!
Excedrin PM 3/night - INSOMNIA (If not Excedrin, some kind of tylenol pM type)
Femcon Fe (birth control pill)
Lyrica 225mg - "Fibromyalgia"


OKAY! There it is, I wish I had an MRI scan to show for an easier assessment, sorry! If you've taken the time to read through all this and comment your opinion, THANK YOU SOOOOO MUCH!!! Thank you!

I hope the MRI will give you and the dr some more information.

About the kneecaps & possibly some of the other muscle aches and pain - have you checked for hypermobility?
http://www.hypermobility.org/beighton.php

If nothing is definite on the CM after the MRI - make sure they check it for extra cervical ribs.

So many of the symptoms you mention could be from something like thoracic outlet syndrome {TOS}also.
here's a good info link-
http://www.medifocushealth.com/RT017/index.php
and more
TOS sticky thread-
Our Useful Links - Websites, Articles & Polls
http://neurotalk.psychcentral.com/thread84.html

:hug::hug: Jessica :hug::hug:

Chiari certainly can explain a lot of these symptoms--maybe even all of them. Good luck with the MRI, and please let us know.

Also, make sure to get your thyroid and Vitamin D levels checked out. You have symptoms of both, particularly the Raynaud's-like cold extremities. I have both hypothyroid and extreme D deficiency, so I know about this first-hand. I also know thyroid issues can be common with neuro dxs, including ACM (which my son has) and hydrocephalus (which I have). You're fortunate to be in FL (where the weather isn't the North Pole winters we get up here in New England), but D malabsorption is still a possibility and may explain some of your symptoms.

Good luck!

LIZARD :)

chiari
 

here is a excellant list with almost everything you had listed

http://www.chiarione.org/symptoms.html

new
 

Ambellina I sent you a email too .

hey ya's hon!!
 

Yep sounds like an MRI is definately whatcha need, and go on from there. I wish ya the best, and please3 please please, keep us informed about how yer doing, ok?

God Bless you!!!

Dawn

I haven't had the MRI yet. Been having problems with my insurance(still!). I have Tricare Prime, but when I got it back once I proved I was full time in school, they put me in as Standard without notifying me, so I had a heart cath, lab works, and doctors appt on a lower insurance plan, which means BILLS. I get PRIME back April 1st, resubmit bills then too.

So, April first I plan on having my PCP schedule the MRI of my head/neck/spine! I'll let everyone know then what the result are!!

Thank you everyone for your comments on this :p

dr
 

Dr. Barth Green is the chiari expert in Florida . Maybe you need to see him . good luck

Sorry to hear you are so ill. :(

I just wanted to ask you how did you feel after being put on Lyrica and Cymbelta. I am feeling better since I started taking it. I have Small Fiber Diabetic Peripheral Neuropathy. The nerve pain has dramatically decreased. Like you I gained weight and major brain fog. It like my mind is swimming in jell-o.

I quit the Cymbalta. It made me nauseas EVERY time I took it. It also wasn't helping my depression/anxiety or pain. I recently ran out of Lyrica, but as of right now don't plan on continuing it. It helped at first, I think it's helped my body to continue gaining weight rapidly. I first got this "drunk" feeling when I started Lyrica, slept better, but withing a few weeks it went away. I wish I could say I had better experiences with these meds <3 This was my 2nd cymbalta attempt... no more!

My mind has been screwy before those meds though :(:rolleyes: