Arnold Chiari malformation

[niki3350]

Hi all

Just got back from my neuro appointment.  Saw different neuro who was fab sat with me and my husband and clearly went through all of my results to date that include mri T1 and T2, VER, BLOODS AND LP that ms neuro put me in for.

While going through T2 images he picked up on a significant swelling in my brain and has now booked me for further investigation strongly feels that it is Arnold chiari malformation, so scans MRI i presume ????? of spine and brain.

Feel rather let down that it has taken 2 years of hell and testing to finally be taken seriously and that the ms specialist only looked for leisions and nothing else as now feel I have had LP, VER for nothing!!!!!

Is there anyone out there that suffers with this or that can offer me any advice or help on how to control symptoms.

Neuro said it definately not MS now so this neurological journey continues!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks to everyone who has offered advice and support

Niki x x

[kwarendorf]

Hi JB - Welcome to our group.

I'm glad that you seem to have found a common, addressable thread to you family's medical issues.

This thread is pretty old. I haven't seen nikki3550 around in a while and suspect she no longer visits.

I just didn't want you to think she was ignoring you :-)

Kyle

[JeannieBrackett]

My husband was diagnosed in 1993 with MS. So the meds began, but NOTHING helped, he got worse over the years. Today he is totally disabled, has not worked for years and has lost so much quality of life for himself, me and our family. THEN, in 2013, our youngest daughter, you guessed it, started showing symptoms, that we thought could only be MS. .But she went to a real doctor, a great doctor, who sent her not to a neurologist, but to a neurosurgeon, and she does not have MS, she has Arnold-Chiari, her surgery was in April 2013,  still we thought nothing of it.  But this fall, September, our grand daughter fell down the steps, again. Our daughter rushed her to her neurosurgeon, because she had a gut feeling. and sure enough, she also has Chiari, her surgery was Sept 30, she is doing great.  So, we dug out my husbands MRI from a stroke he suffered in December, and guess what....... Chiari.   nearly 30 years of suffering, misdiagnosis, and mistreatments.  His neurosurgeon appt is Nov 13. Our prayer is that it is not too late for his surgery and that he can get some relief from his many many symptoms.  How can doctors be so uncaring, so uneducated,. Furious does not even begin to cover our emotion.  To be fair, he does have MS, but his lesions do not rise to the level of his disability.  So, be glad you had a good doctor that spotted the Chiari and you have been validated and now can seek proper treatment.   Good luck to you.

[michelleislay]

my aunt has arnold chiari malformation 1.  

she suffered for years and years and was ALWAYS passed off as a hypochondriac.  

my own mum confessed after hearing of her diagnosis that she always had though my aunt to be exaggerating everything.  so i can imagine how nice it feels to have finally been taken seriously!  hooray for that!!

i do know that she had a terrible time with the LP she was given, you mentioned having to go through one...i wonder if your experience was similar?  i could be wrong on this, but i think because of the pressure on the base  of the brain, people with arnold chiari really suffer with lp's.

as for surgery, my aunt has been diagnosed for about 8 years.  she's contemplated it, but never gone through with it.  she has four children who are all nearly grown now and i have a feeling she may revisit the idea in the next few years, but she has heard many, many success stories.

very best of luck to you with that diagnosis.  i hope you find some good support in the chiari forum.

[Quixotic1]

I think there is a Chiari Forum on MedHelp.  Congrats on finding a doc that cares to practice good medicine.  They are out there.   That's why it can be valuable to shop around.

Quix

[janbubears]

hi Nik

my favourite person on MS forum  but sshhhhh dont tell others ha ha

I looked this up on internet last night and theres quite alot of good info online .

I have read that the operation is not always wise or needed, but hey im not medically trained just what i read.

2 x positive things 1 x its not ms, 2 x you are been taken seriously at last  keep me informed hun and best luck - chin up  xxx
jan xxx