Chiari Surgery or Treatment Question (Also have Ehlers Danlos and Pots)

[Georgiag111]

Hi everyone I am 36 year old mom of 6. I have POTS and EHlers Danlos Syndrome recently diagnosed with Chiari. 8.5 MM tonsil. I suffer from SO MANY symptoms which could be EDS, POTS or even this. My scans showed all good except c4 and c5 a SMALL protrusion but otherwise nothing with red flags.Exact words on the report At C4- C5 there is a very small central disc protrusion dish height is preserved.  I saw my first Neurologist 3 weeks ago and he didn't even really talk or treat me with anything knowing I have Chiari he just said I suffer from Migraines and went home.I am NOW scared to travel anywhere for the same answer. I finally got into a specialist at Iowa CIty Which is about 5 hour drive there. My question is if I have confirmed Chiari with 8.5 MM could it really be just migraines and Ill be sent home? I would hate to arrange hotels, Food , Babysitters and basically 10 hours in a car when I cant even handle walking around my house or sitting up for a few hours at home. Here are my symptoms
My symptoms can be Ehlers Danlos, POTS or Chiari related:
*Dizziness
*Fainting
*Stability issues/Falls and trips
*Urine / bowel issues
*Cold feet hands numbness tingling lose feeling
*Joint pain
*Numbness body
*Memory loss
*Cant come up with words as I think – Long pauses Words just don’t want to come out
*Migraines or headaches
*Fatigue so tired when sleep can’t stay asleep
*Severe Back pain bad whole spine including especially ball of neck
*Light sensitivity wear sunglasses at nights
*Double Vision  my eye test came back okay but just cant focus
*Neck pops (pinch nerve?)
*Jaw locks/ Dislocates
*Nausea eating issues
*Sore Throats
*Prone to sinus infections and deep coughs
*Panic attacks
*Depression
*Emotional
*Crying / emotional  
*Low pulse had high blood pressure (pots)
*Hair loss
*Gasping for air like I just can't breathe (allergist has me on inhaler don't help much)
*Nervousness
*Concentration issues
*Depression

Anyways I guess my long about question is Would you all do the drive ? When the Neck and Back MRI said I am okay except for the C4 C5 small protrusion and having the tonsil ?

[Georgiag111]

I uploaded pictures on my profile

[Georgiag111]

Yup Dr. M I'm Iowa city :)

[selmaS]

  Iowa?...Dr M perhaps?.... That is great, the only reason to go back or have a follow up is if you develop new symptoms.

The only EDS Dr I am aware of is Dr F in Baltimore, MD......I know there is a list and will try to pull it up.

[Georgiag111]

I saw a Chairi specialist yesterday here in Iowa city he gave me that response that I am not compressed its all EDS related, surgery isnt needed I need to find a EDS dr to help me with all my symptoms. I do for sure have Chairi though no follow up is needed.

[selmaS]

  Good Luck and don't forget to ask for copies !!

[Georgiag111]

Thank you , today is cine MRI day. One step closer to Friday specialist in Iowa city

[selmaS]

  I made my comment on one of the pics.

[huskerfan71]

Hello Georgiag111!  I was just reading through  this thread and I am curious about where your from.  Your from Nebraska....right?   I'm in southwest Iowa. We might be somewhat near each other!

[Georgiag111]

Yes I am in Blair Nebraska !

[Georgiag111]

Okay thanks I will when I get home . I only have my images from disk and took pictures but don't know what I'm looking at per say.

[selmaS]

  I can only recognize issues my NS pointed on on my MRI....so, I can see a herniation, kinked brain stem....and a syrinx ( I didn't have one, but was shown what I didn't want to form)....

You can post it in  your profile page here and limit who can see it....

[Georgiag111]

By chance you good at reading MRI ? I can give you my email if you want to see just for opinions I know you're not a dr .

[selmaS]

  Fabulous !! Good Luck....and remember to ask for a written report to be sent when it is ready....you will have to sign for it to be mailed....

Good luck

[Georgiag111]

Thanks they got me in for Wednesday the CINE MRI and will burn me a disc that same day. So I "should" have everything for Friday .  I have everything else on hand.

[selmaS]

  Help is the optimum word...fix is not achievable since this is a malformation of the skull....we can only help widen the area to allow the CSF to flow  more correctly and hopefully lessen the symptoms.....

Keep us posted...my fingers are crossed for you.

[selmaS]

  always take copies of your lab reports and any testing you have had along to any Dr visits as it may help them find the best course of treatment for you.

Did you have a CINE MRI? If not, ask about having one done.

[Georgiag111]

I have all my labs , and MRI disc . my primary is trying to get me into a CINE mri before Next Friday .. Fingers crossed!  Otherwise I got everything else including Cardiology report. I REALLY hope they can fix , Help me!

[Georgiag111]

Thank you I didn't even think of bringing lab work ! The Mri that got faxed to the specialists office was
Mri brain
Mri t spine
Mri c spine
Mri lumbar spine
Full lab panel
Cardiologist did month heart monitor EKG few other tests
Allergist did a full lab panel too

[selmaS]

  Hi and welcome to the Chiari forum.

There is a possibility that all of your conditions are contributing to your symptoms.... and there is more testing that can be done b4 you travel to get the same reply as you had b4....

Have blood labs done to rule out low levels on vitamins and minerals...Vit D, B12, magnesium and potassium which can have similar symptoms....

Then a CINE MRI to see if you have an obstruction to CSF flow....and MRI's of the complete spine to see if you have a syrinx, disk issues, tethered cord...or any other abnormalities.

Then there is testing for related ( which you seem to have most done already) and non related conditions to make sure you do not have anything else underlying to  cause any surprises...

For me, I would get more testing done....then send copies of results b4 you travel ....most specialists will only ask to see you if they feel they can offer you help...JMHO