Doctor experiences?

Question

So my question is kind of in response to my own troubles with finding a Dx. I know for a fact something is wrong on my MRIs.  It is obvious. There IS a retroflexed odontoid or Basilar Invagination...very crooked brainstem...I am not sure which, kinda hard to say which from which, but I am leaning on the RO based on what I read online about defining the two...theres tons of crowding, and maybe not a 5mm herniation as chiari would normally be, to be considered 'real', but my cerebellum appears clearly below where its supposed to be. 

MY question: 

How many doctors did everyone see before their Dx? How many told you you were lying, insane, or that you were 'just fine' and your MRIs were normal? What kind of doctors, MD, NS, Specialists? 

I know I read ALOT of people having SO MANY dr's blow them off....but I just worry, at what point do I let my symptoms continue debilitating my life and give up?  At some point, how many times can you hear the same thing before you cant bear hearing it any more..? My next apt with a new PCP is on the 18th... shes an OD. I expect nothing new, but my insurance wont allow me any other path to help, and no specialist cares or wants to see my MRI if I cant pay tens of thousands up front in cash for additional testing.  Lets just say, I dont have 10$ to pay my current medical bills. 

I am so frustrated.

skrowe · Answer

Thanks so much! I am telling myself so much to expect the worst, Lol!

selmaS · Answer

I am sure you will get there too...just do not let any disappointments along the way there get you down.....expect them, anticipate them and work passed them

skrowe · Answer

hahaha thats funny him and the dr got along so well, but good that the experience there went so well too.  Im dreaming of that day...haha!

selmaS · Answer

I thought the same of mine he was going to trust what the Drs said...but after the 2 wacky visits he was up to travel to NY and that is where we went....and BTW- he really liked the Dr up there sometimes I had to jump in and say Hello remember me, ....they would get to talking and forget about the appointment at times....but it felt so good to have someone we were so comfortable with to tell jokes and family issues with.

skrowe · Answer

I sure hope something like that happens with him...I know he has done some reading on his own, not like me though...he thinks I am 'overdoing' the researching.... he is putting more trust in the dr's than me. Maybe seeing someone be a complete jerk will change that? haha...not that I want to go through that.... lol.

selmaS · Answer

I know what you mean....in the beginning I thought my husband would not understand what was being said....but he did his own research ( I had no idea) and had his own questions to ask and when we reflect on one visit to this one NS he gets all hot and bothered on how he not only treated me and the condition but his attitude in general....at that point I knew he had to go to ALL my appointments....and he did....yours may find more control and the desire to protect and help you and that supersedes the nervousness.

skrowe · Answer

Oh man, thats going to be hard...my husband is probably the only one who could go with me...and we are both kinda nervous pushovers! hahahaha!  

He is almost worse than me when it comes to being assertive and standing up for myself/himself. What a pair we are. 

I guess we will have to do our best... Id personally like to try getting any extra testing done before the end of the year since our deductible is currently met....and is sickly huge. Get as much done now while insurance will cover most of it..... so, that will be my main goal i guess...try convincing someone to do additional testing regardless of what they personally believe..

Im exhausted just thinking about all this.

selmaS · Answer

It is never easy to be prepared for the possible questions or statements this Dr may have for you......I know I thought I would be ad was  dumbstruck every time....try not to think too much b4 hand and take someone with you to help with questions as many of us are like a deer in headlights when we hear something we didn't expect.

 The best thing to do is go in with an open mind and wait to see what they think.....

 I went to a few that  did not have anything helpful to say.....one said I did not have Chiari while the next one said I did...but it was " above him" and could not offer help.... 

 Just know if this Dr does not have any helpful info for you, there are other Drs to check out....

selmaS · Answer

First, Chiari symptoms cycle so they come and go and I had down times some lasted a few months and some a few yrs at a time I felt better, then for some unknown reason symptoms would flare and I would try a new Dr.....

 There is a list of "Chiari symptoms" but it is not as long as our unofficial list we have.....but I also know some of the symptoms may be from a related condition and not so much from Chiari itself....and there are not many Drs that know to look for these related conditions and or symptoms.

First- make copies of the MRI do not take your originals in case you do not get them back....

 I would take copies of MRI's of brains with a retroflexed odontoid from on line and show her and say I was looking to see if maybe this could be something ...and then show a "normal" brain MRI....she will have to see what I did. and I am not a Dr.

skrowe · Answer

OMG, how did you deal with that?  How did you keep from having a mental breakdown?! I am going to be 27 next month, I genuinely do not believe I would  be able to go another 21 years... My symptoms are so bad, i can barely get through my days as it is now... But, I can see how it doesn't appear that way given Ive tried so hard to keep it to myself over the years, as my mom has the same/similar issues and watching her get ignored, or people insinuate its not real, I realized quick it wasn't something to make public.  My dad always reprimanded me for things like fatigue, nausea, no appetite, pains, headaches...(let alone anxiety or depression....that crap was alllll just for attention and required discipline to fix it...now tell me that is not messed up.) .. as if it were behavioral... right into my late teens. So, that only reinforced it was something to hide at all costs...Even now I can barely handle disclosing even the minor symptoms I have to close friends... and even then, some of them still distanced themselves, or treat me like I am making it up.... regardless of how long our friendship has been, or how much they otherwise know I dont lie for attention, or anything they end up believing once I disclose my medical problems... My husband believes me, thank god...but he gets tired of hearing about it when I am having more problems than other days... or lately, now that I have begun to realize what is/may truly be going on....he just gets tired of it and it really really brings me down bad...the person closest to me gets sick of being reminded or hearing about what is going on each day with me, or if I learned something new...

Fun fact, my doctor decided to remove tinnitus from my symptoms list on my medical record apparently.  So that brings it to a whopping 5 symptoms of the 21+ i gave her a written list of.....that actually made it to my medical record... 

I dont understand how doctors just get away with this... 

Do you have any recommendations on specific verbiage to use with my dr, particularly at my next upcoming apt?  I wanted to take in a few printed copies of my MRIs that show clearly the retroflexed odontoid, and the clear crowding around ym cerebellum....so she cannot deny its existence....but, I dont want to come off sounding like an ******* and cause her to immediately jump into defensive 'im smarter than you you crazy person' doctor mode...... BUT, I also dont want to have her tell me that I dont know what I am talking about, I want to sound confident (NOT my specialty AT ALL) and as if I DO know what I am talking about enough so that she will take me serious, and actually acknowledge all this stuff going on in my brain. 

I know if shes going to deny it all that will happen regardless, but i do know how i present myself can also effect the outcome as well.

selmaS · Answer

Too many to count.....in High school I was sent to MHMR for counseling....the head Dr said I did not have a brain tumor and wasn't going to die....what did I want to do when I got out of high school....after 3 sessions with the same 3 questions I stood and said - "I won't be wasting my time coming here anymore"....and walked out...No testing was done...could he see thru my head to know the cause of my headaches? ugh....a few years later I went to an emergency place for a really bad case of the flu and the Dr said is something wrong with your neck?...huh...finally when not even asked someone noticed something....but I was in my early twenties and did not get a DX until I was 48....

I know just how you feel....I really do.