Jump to content

Milwaukee/toledo Trip


Recommended Posts

hello fellow potsies!

i wanted to post a quick post .. and let you all know what i found out...Uhm the trip to milwaukee was ver long and tiring.. but i feel worth it!

Monday i had my baer and ssep testing done along with better mri scans/chiari protocol..

my results show that i do indeed have chiari malforamtion. It also showed that i have congential stenosis... Uhm my left cerebral tonsil is herniated .. and that i have pinching and "squooshing" going on with my spinal cord and my brain stem...

uhm also that i have a majorl bad herniated disc at c5-c6 level and a large bone spur at the same spot

hmm its also shows that i have a vetebral artery being sandwhiched between my hernated tonsil and the brain stem...

my chiairi diagnosis was made not only b my mri's but also b the ssep testing...there where abnormalitys there too..

first course of treatment rght now is too get surgery done to fix my neck and m bone spurr... it will be scheduled with in a few months...

then chiairi surgery... if i decide that i want to go that route...actually i'm facing 3 surgies ...

uhm.. the dr feels that my dysautonomia and my pots are congenital... that my pots is being mde worse by the chiari...

that i have had both issues like i said since birth b/c i have ALWAYS been sick...

I relize that chiari suregery is not a cure for chiari or for pots..

but atleast im getting some answers... and the dr that i saw assured me that what im suffering from is very real.. and that im not crazy.. and most certainly and am not in need of a psychiatrist like ive beeen told over many yrs that i need b/c I wasnt really sick.

I feld so validated the moment the dr and the NP started talking to me...i also still feel overwhelmed at all the information thrown my wa as well.. and ever more overwhelemed that im finally getting some answers!!!

I kept saying WOW!!!!!! and OMG!!!!!!!! when the dr was talking to me... im still overwhelmed and quite honestly in shock that i got answers!

Today i saw Bev at dr grubs office... im going to give mestinon a whirl again... im going to take a quarter of a 60mg tab once a day a slowly slowly work my way up to the full 60mg. Also increased my beta bockers.. as well.. but im only going to start one new meds or medication dose increase at a time.. get use to one thing then increase another...

just wanted to let you al know what i fond out... the new/confirmed diagnosis dont explain everything but they sure do help!!

Hugs to you all!!


Link to comment
Share on other sites

Wow! That sounds like you have a LOT going on!

I wish you the best of luck!

I am not sure what types of precautions you may have etc. but be careful with the vertebral artery compression. I hope they gave you good instructions, b/c you don't want that to get worse etc!

Good luck with everything! Hope everything works out well! :huh:

Link to comment
Share on other sites


I'm glad that your testing has come up with some answers and that you have doctors who can understand what is making you so ill. Sorry to hear the actual results though - it must be really difficult to face the prospect of surgery. I hope you get some good advice and help to make the right decisions about your treatment.

By the way - what is ssep testing? and Baer testing? I've not come across those terms in the UK.


Link to comment
Share on other sites

SSEP=somatosensory evoked potential (tests to see that signals are getting from test site to brain)


BAER=brainstem auditory evoked potential (auditory signals are getting to brain)


Link to comment
Share on other sites

Linda, I am glad that you have finally got some answers....Keep us posted!


Link to comment
Share on other sites

Well, you got more answers but things just got more convoluted and complicated.

Did he suggest ANY conservative therapies? Hard collars, posture changes, etc?

Surgery can be the start of a pattern so I hope you can find a site of folks who have been the surgery (ies) route and can respond accordingly.

Hope you get a SECOND opinion on the surgery as well. ALWAYS critical and how will you handle traveling after surgeries? Can you deal with flying ok?

sorry to be full of questions. :)

Link to comment
Share on other sites

:wub::wub::wub::D thanks everybody for the support! :)

Sophia.. yes i did ask about alternative treatments... Uhm I was told that at this point conservative treatments are really not going to be of much help.... :blink::unsure:

i have been thinking of travel arrangements.. and will probably fly next time out there... as it sucha long trip!... Uhm I do have a few other dr's that specialize in chiari to get opinions.. thanks to the wonderful ppl on here!...

i have many many concerns and fears about having any surgery really..the neck surgery freaks me out enough that alone.. let alone throwing 2 other major surgies into the mix... i do so badly with medications.. and other odd ball things (IV tubing..tape..ect..) i mean spinal cord.. brain stem involvement just gives me the hebbie jebbies for real...

uhm.......hahah i forgot wahtelse i was going to write.. so ill sign off for now..lol...

sophia no need to be sorry for asking q's.. i was allready thinking them myself..:)

hugs to you all


Link to comment
Share on other sites

dont worry danya.. ill be back! LOL.. uhm several times by the sound of things :blink:...ill let you know next time im heading to milwaukee.... :unsure:

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...