Newly Diagnosed, Seeing Dr. Rosner Next Week

[rmlyonsfamily]

My husband has had symptoms for the last few years, but most specifically the last few months have been miserable.  It came to a head last week when he had trouble walking, using his hands, his headache was 10/10, blurred vision, etc.  We thought he was having a stroke.  Our family doctor saw him the next morning and he failed the neuro test.  Sent him straight for MRI and it came back "borderline chiari malformation type 1".  No measurements listed on the report at all.  By Friday they scheduled us with neurology, but after neurology got the MRI report they called us and cancelled, saying he needed to see a neurosurgeon.  I did some research and found Dr. Rosner's name.  Called them today and  managed to get an appointment for next Thursday!!  She just happened to have a cancellation right before I called!  

It's all happening so fast, but that's ok!  I want him better!  He's ridiculously symptomatic and I just want my husband back!

So....  when we go next week...  what can we expect?  What specifically should we ask?  Advice?  Experiences with Dr. Rosner and the hospital there?  We are way more familiar with Duke...  so this is way different for us!

Also, I don't quite understand the "borderline" comment on the MRI report...  I've seen the MRI pictures myself (I'm an occupational therapist) and while I'm certainly not trained to read them, I am smart enough to SEE where the "dip" of the cerebellum is and doesn't belong.  With him being soooooooo symptomatic, how can they say "borderline"??

Thank you in advance!!

[Viva001]

I should add that he's amazingly accessible, will always answer your email w/in 24 hr, and usually the same day.
Park Ridge Hospital is wonderful; they greet you when you walk in, as if you're a long lost friend.
Also you get a nearby hotel discount-- just for Rosner's patients.

[Viva001]

I am a patient of Dr. Rosner's, and I trust him with my life-- literally.  He did my cervical laminectomy (after misdiagnosis for years) in 2000.  I began having many symptoms again, and he recently Dx'd me w/Chiari 0 ( or borderline).  I agonized over the decision to have surgery; that is when I found this forum, which as been extremely helpful!
  I'm scheduled for surgery 6/13 and am actually looking forward to it.  I'm weary from suffering.
Vivian

[irislita]

Do NOT cancell dr.rosner!!!! Please believe there are so many drs that dont understand chiari and the connected problems.U r lucky to have a specialist appointment...for some of us it takes ages...please go there and if it would just be to exclude chiari cause!! I was diagnosed so many things before and in the end its all chiari related! Keep us on ur journey.

[selmaS]

  Deff go to the NS, if it is not Chiari he will tell u, but some with Chiari have had seizures....it may be connected and I am sorry to say, ur GP is not qualified to make that decision on a radiologists opinion....let the BS see the MRI and go from there,....u did the other rt already and didn't get newhere.

[rmlyonsfamily]

Well...  saw our family doctor today for follow up.  He is CONVINCED hubby is having temporal lobe seizures and doens't want us to see a neurosurgeon, wants us to see a seizure doctor instead.  They say that because the MRI report said "borderline" CM, it wasn't enough and couldn't really be what was going on.  

We haven't cancelled Rosner's appointment because we are not sure what to do.  Years ago he went through test after test after test, EEGs, MRIs, etc. because they were trying to diagnose seizure disorder and never could.  We certainly don't want to go against what our family doctor is saying, but also not convinced that neuro for seizures is the way to go.  For one thing - and the family doc agreed - seizures don't have a postictal state that is ongoing like he has had.

Hubby is frustrated as well.  I just asked him if he looked up temporal lobe seizures and he said he wasn't going to - he was going to let the doctors diagnose him.  Believe me - there's nothing I want more for an answer and a solution....  I don't want to push him, but I do want the RIGHT answers.

Not sure what to do from here....  

[irislita]

I am happy u already have an appointment with a specialist.so u might not get the run around a lot of us are sent to.keep us posted

[selmaS]

  Hi and welcome to the Chiari forum.

First, ignore the verbiage on the MRI report and wait to see what Dr Rosner has to say...there is not clear criteria that all use that is updated for dx'ing chiari so the term means little to nothing to me...it may refer to the length so it may be 5mm and that is what many Drs use to determine if one has chiari, but chiari is the malformation of the skull, not the herniation, that is the result of the small skull...and the symptoms and how it is  affecting ones health is more the issue, if there is a CSF obstruction, if there r related conditions....

We do have a list of questions for the NS in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

Chiari is not something that much time is devoted to in med school, so too many  Drs go by what they were taught and in many cases it is out dated info that they were shown, a true chiari specialist is doing his/her own research on chiari...if u see a few diff Drs u will see what I mean.

Make sure they check him for the CSF obstruction, sleep apnea, tethered cord, disk issues, ehlers-danlos,ICP.....

Keep in mind not all with chiari r surgical candidates and sometimes a NS will opt to try PT and PM....first b4 considering surgery to see how the chiari is affecting ur DH.,.....be open to what they r saying and learn all u can.