Should i get 2nd opinion?

[annelie1980]

Saw a NS for the first time. He said he currently wouldnt operate, my neuritis could be caused by my Chiari but didnt seem interested in any other symptoms. I had given him a list of my smptoms prior to my appointment but he didnt ask about anything. I felt like i had to explain everything and if i didnt mention it....he didnt enquire. The reason for me giving him my list of issues is that my brain is so addled i forget everything!! I was told there was no benefit to annual MRIs unless my symptoms change. I knew i didnt need surgery but with a multitude of neuro symptoms and 11mm herniation i thought at least annual follow up would be prudent? Any thoughts?

I am unable to get in to a Neurologist until mid March. It has struck me that the doctors seem to be stuck on the idea that the symptoms are directly related to the length of herniation...they seem too "text book" in their diagnosis. Im frustrated and tired of not being listened to.  My neuro symptoms quite frankly are scaring me.

I suppose what im asking is what kind of follow up...monitoring is usually recommended for us Chiarians? I will wait to see Neurologist but if he says do nothing should i seek second opinion? Im not sure they have much experience with Chiari. It seems very hard to find info in Australia! Any suggestions more than welcome.

thanks...annelie :)

[annelie1980]

I had to laugh at the neuro yesterday...he did remark that chiari is very common and of no real concern. All my drs tell me its an incidental finding....naturally! completely unrelated to my neuro symptoms of course! Makes you wonder really :) i have read about eds but no one has ever mentioned it as a possibility so i didnt ask further...it does make sense though. i am surprised that no one looks at me as a whole...they seem to pick out little bits of info to suit their diagnosis rather than linking or seeing the overall picture. Im going to seek out a chiari specialist from your list and see what they have to say. Cant hurt really....im not after special treatment just someone who has some knowledge of chiari. I dont know how you can have part of your brain hanging down, multiple neuro and health issues but it all be of no concern....hmmm  :) time to put some pressure on those docs for answers!

[selmaS]

  Since you say you are on a good diet and have low levels of Vit C...I have to wonder if you have EDS as it can cause mal absorption  of minerals and vitamins be it from diet or supplements.....

I know I must have had Hashi's for a long time...as I have slipped into hyper and hypo periods....weight gains and losses with no change to diet or exercise....

Sorry you have to endure those attacks....no fun since you already got rid of the GB....

I am doing well thanks...do keep in touch.

[annelie1980]

Sorry...havent been on for a while. Yes recently diagnosed wirh Hashi's although i have been hypothyroid since 15. Due to have ultrasound next month...fingers crossed the unusual nodule is normal. Saw endo last month who said my ultrasound showed "classic hashi's destruction". Currently in hyper stage (tsh 0.03) which is just crap....will take another month or so to balance out and the horrible symptoms to disappear. Im vitamin C deficient which surprises me as my diet is great. All other vitamins and minerals are perfect :)

Have now seen neuro surgeon and neurologist. NS not worried at all...doesnt need to see me unless symptoms change. Neuro diagnosed me with Chronic Daily Headaches. Put me on medication and suggested physio and exercise and review in a few months. Not worried about my CM1 at all...barely seemed interested in it.

We will see...right now i need to get my gut sorted. First bile duct stent blocked therefore failed so im up for a second one, hopefully soon as im getting regular attacks...like gall bladder attacks, minus the gall bladder!

Hope you are keeping well :)

[selmaS]

  Postural symptoms could also be low levels of  magnesium or potassium ...and it could be a related condition like POTS so do have testing to rule these out as well....

If you have EDS no matter how well you eat, if you do not absorb the minerals and vitamins you eat, you could still have an issue....I use to tell my Dr my diet and he said well that can't be it, when it was....so do look further into other possibilities....

  Have you had your Thyroid ultra sound done?...Many of us do have an auto immune thyroid condition called Hashimoto's thyroiditis....which can change from time to time....so you could be hyper and fo to hypo.....to normal readings.....so do make sure what all is going on....it seems all too much at times...but deal with one at a time and you will get thru it all.

[annelie1980]

Thanks Selma. Yes i did get the list from you previously....theyre a few hours away from where i live so i thought id start local :)

Full spine mri was normal...big tick for me! No syrinx thankfully. No CINE mri as yet but am now having what seems to be postural symptoms so it maybe on the cards soon. Have had migraines in the past...got one two weeks ago. Was settling in for a goodun...lay down then thought i was gonna be sick. When i sat up it disappeared completely...just like that! Very odd. My neuritis playing up again and when im tired my eyelids get lazy. I have hypothyroidism and seeing endo tomorrow to rule out other autoimmune issues. My vit d and b12 are excellent...always have been but strangely im vit c defficient...i eat healthy so definitely not diet related!!!

I see a Neuro in 6 weeks. I have been waiting to get an appointment since november and considering he is booked out until october....i wont complain!!

Thank you for your advice...youre very kind. Its very much appreciated x

[selmaS]

  Hi and welcome to the Chiari forum.

You will need to locate a Chiari specialist and no matter where you live it can be difficult.....we do have a small list for Australia.......so click on the link for Drs list and it will take you to the USA list with links to all the other links...

Did you have a  CINE MRI to see if you have a CSF obstruction and was a syrinx ruled out with a MRI of the cervical, thoracic and lumbar spine?

Also you will want to rule out ALL related conditions as many of them have similar conditions to Chiari.....

  As for monitoring it usually is not done unless the symptoms you are having warrant it or if you get new symptoms....

Since you have symptoms I would suggest testing for ALL related conditions  to see if they are part of how you are feeling....blood testing can indicate low levels of vitamins D and B12 and minerals magnesium and potassium.....these  can cause brain  fog and a few other issues....so do rule these out to be sure it is Chiari causing your symptoms....also know surgery is not a cure and if you do not have a CSF obstruction surgery is not an option...as surgery is done to restore CSF flow....

I know it is frustrating to not have a Dr know listen and understand how and what you are feeling....but the members here get it.

Hang in there.