So scared !!!!

Yeah Though about going to A&E as I'm getting panic attacks every few hours . But do they just give MRI's I'm A&E UK?

Hi Darren,

That was happen to me, I have panic attacked one day, my son caled the ambulance and took me to Royal Burnemouth Hospital A&E - make sure you get an ambulance do not go to A&E - please do not feel gulty using your ambuance, we paid hundred and hundred of taxes that is what you usng for..amazing how many migrants and foreigners taking the advantages of our NHS..here you are we hardly use our gps...there you go we have such a serious mechanical problems..you must look after yourself..and NHS are pretty good..you must tell them how you feel..just make sure to be assertive and telling them what JENNACYDE have quoted you below write it down - remember it..if they refuse to MRI you..ask them to put in writing if need be go to PALS counter - because they should not refuse to get MRI - that was I have done - they straigh away MrI/scan me...there and then they knew  have got CM1, they thought I have got Fibromyalgia good job I was so assertive and asked them to put in writing for me..they will be terrify if you ASK that..if need be write it down as well there is a solicitor up noth called JEFFRY act for ''NO WIN NO FEE for negligince, it might not come to that...but it is always nice to know where you stand....let me know if you need more help

Thanks for the advice means a lot . I really only rite now have bit dizziness and ringing in the ears (which has got worse with the worrie ) think I'm best off waiting for the MRI scan from the doctor .... Fingers crossed!!

Darren, to be honest, if I were you, ith our condition, you do not ant to be put your self in jeopardy, this is serious condition, the longer you leave it the worst it can get, hence, the earlier the neurologist know about it, the s soonest they would liike to get the operation done.do not forget from the start they get to diagnosed it then you might need second opinion which neuro surgeon you like to go to..go the the website of Ann Conroy Trust to see which Neuro surgeon are listed there, they are the one who are get used to and interested in doing operation for chiarian - list it don which one near by you and talk to your neurologist if they can refer you to them..you must be pro-actve read all about our condition on the website there are lots on the web (you tube - the information from Mayo clinic are very helpful as it giving full detail of all the informations from different types of chiari and the maintainance and operation and after the surgery, hence its preparing you to be informative when seeing your health care. Good Luck

it may not be a panic attack.  It maybe neurocardiogenic syncope brought on by POTS/Dysautonomia caused by damage to the brain stem. 

a tilt table test by a cardiologist would be a good idea.

Hi

You had sent me a reply which was deleted by a moderator

I am curious what info you had sent me?

MarieChiari

I have no clue what I sent.

There are lots though in you tube about mayo clinic - they showed eerything from the maintenance to the surgery so you know what to expect from Cm1 - CM3

perhaps read it from what Jennacyde just wrote to you, I found lots of you tube help me, not only Mayo Clinic but lots of others

Hi Darren , I went to hospital with a bad head pain / neck pain had CT scan in A&E and a MRI the next day the found the same thing as you low tonsils. Keep on at them until you get the MRI - Good luck.  

Hi thanks for the reply, out of all those above symptoms I have sleep problems, some dizziness, no headaches until I got stressed!

this is acutally a more complete list.

No chiropractors, No roller coasters, No trampolines or bouncy houses, No spinal taps / lumbar punctures / epidurals, No bungie jumping, No skydiving, No Willy Wonka Boat Rides, No nothing that can create a g-force or whiplash. No FOOTBALL. NO WRESTLING. No contact sports.

Yes, this crap can kill. Doesn't mean it will... but it can. This stuff is not taught in medical school... Most likely any old corner 7-11 neurosurgeon will not be good enough. And the name of a hospital does not give your surgeon any more clout than a brand name does a purse.

Yes It's the Chiari causing those symptoms. Chiari does not like to play alone, but doesn't play well with its friends either. And if he tells you it's not big enough, ask him how big his dick is!

NEW to this Roller Coaster? You need a Brain MRI, a FULL SPINE MRI, a Tilt Table Test, a Sleep Study, and have your Eyes checked for Papilledema, and a genetic evaluation for Ehlers Danlos Syndrome. If your doctor disagrees... fire his/her ass!

Also, any biological kids, parents, brothers & sisters.. probably a good idea to get them a MRI and check to see if their brains are fully encased by their skulls.

*Headache (esp. if daily OR at lower back of head, but can be anywhere on the head)

* Painful tension in neck

* Fatigue

* Migraines

* Dizziness

* Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or “halos” / nystagmus

* Tingling / numbness in the extremeties

* General imbalance / clumsiness

* Memory loss

* Restricted movement

* Intolerance to bright light / difficulty adjusting to light change

* Vertigo from position change or sudden standing

* Difficulty walking on uneven ground / feeling ground under feet

* Poor / degraded motor skills

* Difficulty driving

* Difficulty negotiating steps

* Pressure / pain in the neck

* Pressure / pain behind the eyes (soreness in the eyeballs)

* Back pain

* Neck spasms

* Insomnia

* Ringing in ears (like the tone heard in a hearing test)

* Swaying

* Pain when changing position

* Tingling / crawling feeling on scalp

* Intolerance to loud / confusing sounds

* Decreased sensation to touch in extremeties

* Decreased sensitivity to temperature

* Pain & tension along ear / eye / jawline

* Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes

* Drooling

* Spontaneous vertigo

* Hand tremors

* Poor blood circulation / cold hands & feet

* Sinus / mucous problems

* Sleep apnea

* Decreased muscle tone

* Pressure in ears / ears feel stopped up

* Nausea

* Difficulty reading / focusing on text

* Depth perception problems

* Burning sensation in extremeties / shoulder blades

* Menstrual problems / severe cramping during period

* Fluid-like sound in ears (like water running)

* Loss of sexual interest / lack of sensation in pelvic area

* Pulling sensation while sitting / standing

* Intense itchiness w/profuse sweating

* Slurred speech

* Gag reflex problems / lack of gag reflex

* Pressure / tightness in chest

* Loss of bladder control

* Frequent urination

* Dehydration / excessive thirst

* Electric like burning sensations

* Unequal pupil size

* Loss of taste

* Popping / cracking sounds in neck or upper back when stretching

* Dizziness

* Loss of smell / problems with sense of smell

* Dry skin and lips

* Sudden / abrupt changes in blood pressure due to awkward position of head

* Hiccups associated with drinking carbonated beverages

* Skin problems

Other: migraines, oscillopsia, lump in throat, color blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, “strangling” feeling, “floating” sensation, thickening of finger joints

The following is a list of conditions that have been known to be a “member” in the Chiari Gang.

Neurally Mediated Hypotension

Intracranial Hypertension

Hydrocephalus

Neurogenic Bladder

Trigeminal Neuralgia

Spinal stenosis

Tethered cord

Numerous hormonal imbalances

Empty sella syndrome

Syringomyelia

Central Sleep Apnea

Ehlers Danlos Syndrome

Tethered Cord Occult

Basilar Invagination

Reflexed Onadontoid

POTS

Dystautonomia

Gastroparesis

Spina Bifida

Spina Bifida Occulta

Fibromyalgia

Migraines

Cranial Cervical Instability

GERD

Autism / Autism Spectrum

MCAD Mast Cell Activation Disorder/Mastocytosis

CCSVI Chronic Cerebrospinal Venous Insufficiency

MS Multiple Sclerosis especially for EDSers

Sjogrens,

Scleroderma,

Raynauds,

Diverticulitis

Marfans Lupus

Pseudotumor Cerebri

APS Antiphospholipid Antibody Syndrome

Klippel-Feil Syndrome

Occipital Neuralgia

Scoliosis

Lordosis / Loss of Lordotic Curve

Oh, and in an attempt to lighten the mood… Prime Targets for Zombie Attacks {extra brains taste good}

Oh and the possibility of sticking to the refrigerator after too many MRIs

Hi

Thank you for the awesome post I've been having terrible tension and pain in my left jaw throat neck and shoulder its almost unbearable I very rarely have relief from it these days you listed it in your response I have the pain in the back of my head but I wasn't sure that the pain in my jaw throat neck and shoulder was from the chiari does anyone have any suggestions on how to ease the discomfort besides the obvious surgery

I also want to add that I only have the pain on the left side of my jaw, throat, neck and shoulder is this common to have it on one side? The pain I have in my head is usually all over

That list just about sums up my experience. I have a syrinx that was finally identified last year but despite three years of pain and now increasing dysfunction in my arm and leg, I still don't have a proper dialogue with a medical representative.

The Neuro I see is nice but vague and says that it's something I have to live. With and my GP doesn't seem to believe I have syringomyelia , probably because the consultant has not actually written the label down in correspondence. Perhaps he is afraid of misdiagnosis. I did have good intentions about changing consultants after talking to a lovely woman at the Ann Conroy trusts but my GP talked me out of it. That was after I had had two episodes they thought could be mini strokes...all going swimmingly. I have no idea when I will see the Neuro guy again, and that's despite having two black outs,, one in which I lost my sight, and subsequently my GP said 'it's another thing you'll have to live with I'm afraid.'

Tricky thing is holding down a full time job and a full time life when in so much pain. I tried to claim a benefit for the first time ever and it was rejected, despite the guy having seen how I struggle. Looks like cutting down is a pipe dream even though that's the medical recommendations.

The headaches are quite something and the neck lock pain. And then there's the impact on the nether regions!

You sound knowledgeable. Forgive the essay. It's just one of those nights when the pain is too great for sleep.

Hi viola,

i can't help but noticing about you being rejected of claiming benefit/ I used to hqve q friend who work in benefit - why did they decline your benefit, what kind of benefit did you ask?,