so scared!!

[dazza1982]

hi 1st time poster - im so scared rite now, about 6 weeks ago i started having bad headaches, not eating, cold and warm spells, panic attacks, ringing in ears. doctor said i have a virus ( did blood nothing) ....ordered a CT scan which took 6 weeks ( UK NHS) HAD that and came back all ok part from something called low lying tonsils and i need a MRI ASAP! ... now while waitng 6 weeks my smpytoms have all gone away , no headches, eating well, ect ..... im realy worried and haven't stop crying !  ..... any help please?!

[selmaS]

   Hi and welcome to the Chiari forum

Low lying tonsils have similar symptoms to Chiari but is typically more like acquired Chiari....in that an injury may have caused the tonsils to hernniate...or excess CSF fluid.

With Chiari symptoms can and do cycle , so they can come and go....and we can have periods where we feel great and others not so much.

If you are feeling better I am not sure why you are so upset....try to relax as stress can trigger these symptoms to flare.

Have you had a fall, blow to the head or neck? MVA?

[dazza1982]

Thanks for the replay. I'm really upset has I've read seriously surgery for this maybe needed - only symptoms I have rite now are Neck pain mildly. I'm having the MRI within the next week . No fall or injuries.

[selmaS]

  Stress can make these symptoms worsen....so do try to relax if you can.
I had the surgery and am doing well....we are all different as to if and when we may need surgery.....I was having drop attacks and major headaches and balance issues. visual disturbances and many others....so, if your pain is mild and only neck pain you may not require surgery for some time......keep positive, and educate your self on this and ALL related conditions and Drs for your area that are specialists.

[The_beat_goes_on]

I agree with Selma. Try to stay calm. This diagnosis has thrown us all for a loop at one time or another! And it's hard to wrap your head around possible brain surgery.  If your only symptom is neck pain right now. You may not need the surgery right now. Maybe a muscle relaxer and taking it easy (no lifting anything heavy or any acrobatics!) I was joking with my neurosurgeon about this time last year. I was running 5 miles a day and ending with the dance of the sugar plum fairy on the trampoline. No trampolines. ;p

Try to relax until you get more info. An MRI will show much more than a CT scan.

[dazza1982]

Thanks a lot for the advice! Means the world. Think I'm gonna try relax and wait for the MRI and find out more - rite now I have ringing in the ears (worse now with worrie) and some dizziness.  But before the doctor told me I was fine ! Merry Christmas.

[beauhann]

Hi all, just been diagnosed with 13mm (chiari malformation) so upset. Does it cause breathing problems? Risk of repeat puemonia? Does anyone know? Never felt so weak, drained sick and tired in my life

[selmaS]

  Hi  and welcome to the Chiari forum.

Chiari can affect breathing in some people....but not everyone will experience this issue...Not sure it can affect your risk of repeat pneumonia .

Chiari can affect your ability to get refreshed sleep....and cause fatigue....so we do have to listen to our bodies and stop when it feels like we have had too much.

  Chiari symptoms can and do cycle and flare....and bring along related conditions which  can also cause many of the symptoms we experience, for this reason  we need to educate ourselves and find a true Chiari specialist.

[gjjl]

So sorry you're having trouble! Try to stay as calm as possible and know you have people here to support you through your journey! Have you had the MRI yet? Best wishes

[dazza1982]

Hi all just a little update!

Had the MRI results back today. The doctor said the MRI is crystal clear nothing to worrie about - he said they did the MRI with contrast and its normal. Now how can a CT scan pick up suspected low lying tonsils  yet the MRI is  clear??  

My symptom have all  gone ( apart from ringing in the ears).

[selmaS]

  Did you get copies of your MRI and the report?

There are Drs that tell us all is clear when there is something there...and there are many Drs that do not feel Chiari will cause symptoms so they over look it.

Get copies.

[lasel22]

My MRIs were all read as normal too.  One report said there was clearly no indication of a Chiari malformation.  I agree to get copies and if you remain symptomatic you can always send them to a specialist.