Question about Diagnosis

[mystery726116]

I was diagnosed with Chiari malformation last week.  The neurosurgeon who made the diagnosis didn't specify Type I or II, but the diagnosis code stated spina bifida and hydrocephalus.  He didn't mention either of those things to me and I'm wondering if that's a normal diagnosis with Chiari.  

My doctor also stated that Chiari accounts for some, but not all of my symptoms (extreme fatigue, short-term memory loss, head pressure, numbness, dizziness, white outs, neck pain/stiffness, seizure-just one, and one fainting spell).  Do others with this condition experience similar symptoms?  I have a handful of other issues with which I'm dealing (brain aneurysm, aortic root anuerysm, sinus node reentry tachycardia, and possible hyperthyroidism) but I've been told they don't explain the fatigue or memory loss (which have beenthe most impactful thus far).  Thanks in advance for any insights you have.

[mystery726116]

Thanks, chiarigirl11.  Everyone's support means alot.  You guys are great.

[chiarigirl11]

hi, i have experienced some of you symptoms...people with chiari often have similar symptoms and some can be totally differnt, like i dont have seizures but im sure some other person with chiari does. the symptoms range, you have a lot of stuff though...so you have it harder ...your really strong for dealing with alllll those things. hang in there.


~Elle~

[mystery726116]

Brainiac7 and sco2004,

Not that I ever wanted something to be wrong with me, but I've been desperate for answers so that I could just start feeling better.  Knowing from you and others on this forum, that Chiari could actually account for all of my symptoms that are yet to be explained is comforting.  Thanks for reinforcing the experiences of Chiari patients and reminding me that doctors don't know everything!

[mystery726116]

I don't know how long I would have searched for the info you provided.  thanks so much.  I'm starting to piece the puzzle together...slwoly but surely.

[mystery726116]

Thanks for sharing.  I am so thirsty for information and explanations.  I really appreciate your thoughts and prayers and will keep you updated.

[sco2004]

I can relate to a TON of your symptoms!  I was born & diagnosed with Spina Bifida but have heard of a few rare cases of no diagnosis for many years.  Cm is very common in those of us with SB, & it seems to either show up in infancy to toddler ages in a more severe form, or in the late 20's early 30's in "less" severe cases, my situation being the latter.  I will pray for you & am very sorry about all the dx's at once!  

[*Stormy*]

Hopefully I didn't make you feel that way!!

I just get really interested in the medical terms etc and like to share...

It is so good that you guys are bringing this to the forefront b/c most of us thing spina bifida is something you see in babies only which obviously is not true! It is a good thing for others to learn about in case it is something that they come across.

Take care
Carolyn

[Brainiac7]

AmAZING to me how doctors can say they arent all related. ABSOLUTELY they are related. Textbook for chiari. WOW..how much we need more research in the area!

[merlot3106]

When I posted that I had Spina Bifida also I was just stating that they had never said what kind it was that I had either, not that I felt Selma was wrong. Sorry for the mis communication if there was one.
Again Mystery, I pray you get all the help you need.

[*Stormy*]

Hi Mystery...sorry to hear that you are dealing with so much...especially only learning about it all in 3 months time.

For those interested, I looked it up in my "big book"..

Spina bifida- congenital defects in the lumbar spinal column caused by imperfect union of vertebral parts (neural tube defect).

Spina bifida occulta- vertebral defect is covered over with skin and evident only on x-ray or other imaging examination.

Spina bifida cystica- a more severe form, with cyst like protrusions. In meningocele- the meninges protrudes to the outside of the body, and myelomeningocele-both the spinal cord and meninges protrude.

So it looks like Selma is correct that you both must have had the occulta type...otherwise there would have been a very noticeable cyst like protrusion that would be visible when you were born.

Take care!

Carolyn

[merlot3106]

I haven't been on here in quite a while but I just wanted to say that I had CM surgery in Nov. 2009 and then TC surgery in Feb 2010 and during that surgery Dr. Heffez realized I had Spina Bifida which was the first time I had ever heard that I had it. Si I guess what I am saying I have had it my whole life without anyone ever noticing it and I am 40 yrs. old.
Mystery726116 I hope you get the help you are looking for.

[denverluv]

What a shock to find out all these things so fast. This is a great site and everyone here is so nice and helpful - even if you just want to vent- everyone is here for you.

[mystery726116]

I've been suffering from the fatigue and memory loss for about a year and a half, but everything hit fast forward in March when I fainted and had a seizure.  All the follow-up tests have revealed my conglomeration of anomalies.  :)  I've been reeling from all I've learned in the past 3 months.  I'm just glad there are people out there who can relate.  I can only talk about this stuff so much with my mom and husband.  They get scared (understandably) and shut down.  Thanks for reaching out.

[mystery726116]

Thanks for the response, Selma.  I have a bunch of things to look into including finding a chiari specialist.  I'll check out the health pages next.  take care.

[denverluv]

WOW! You have had alot of things happen! I am so sorry for all you have been through. When did all of these happen and do you have any idea why so many things?

[selmaS]

Hi and welcome to the Chiari forum.

Fatigue is a big issue with chiari....pain can drain u of all energy.

When u say the report stated spins bifida, did it have the word occulta with it...I am sure u do not have spins bifida and r just now being dx'd...u would have an opening of the spine that would have been very apparent at birth.

Most chiari dx are for chiari I......there r a few that have spina bifia occulta  which may be classified as chiari II...it all depends on the dr...they all seem to have a diff guide line they
follow.

Since u have hydrocephalus, I wonder if u have pusedotumor cerebri or intercranial hypertension......and if it is caused by a severe CSF blockage.Once u get to a chiari dr u will get the answers u need.

There r many chiari related conditions such as these that many chiarians deal with, but we r all diff and do not share the exact same issues.

Please see our Health Pages for more info
http://www.medhelp.org/health_pages/list?cid=186

and research a few drs on the list we have compiled here of members drs....
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

WE r happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"