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Newest Member: NeedSomeAdvice (45762)

User Topic: Anyone here have Chiari Malformation?
cantbelieve
♀ 22028
Member # 22028
Default  Posted: 8:49 AM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

My daughter's headaches and vision issues started last June. An MRI revealed she has mild Chiari Malformation, but didn't think that was causing the issue, so she started down the path of trying different pain medications, but nothing helped. Also, during this time, she had "ear rocks" in her right ear, which we thought were causing the dizziness. Got that fixed still constant headaches and when looking up or down, her vision gets blurry and tunnel vision.

She took off last semester from school and came home for all kinds of tests with all different kinds of drs. The only thing that has shown up was very mild optic nerve swelling, but a lumber puncture was performed and was normal. She also had a severe headache and had to have a bloodpatch put in which now has caused issues in the L1-L5 discs.

She decided to go back to school and take several online classes along with her other classes and bless her heart, ended up with a 4.0!!! She has revisited with her neurosurgeon and we will see another ophthamologist next week to rule out pseudotumor and if that is normal, wants to proceed with the decompression surgery. Even though her symptoms don't exactly match with Chiari, since all other tests are normal, he thinks it may be the issue but has told us, it may not help. She is like in a grey area because we can't get a real diagnosis and won't know if the surgery will help until we do it. She is almost 20 and wants it, so her life can get back to normal.

My question, has anyone on here have Chiari or knows someone who has that has had the surgery? Any information you can provide will be greatly appreciated.


Me: BS (58)
Him: WS (59)
LTA 4 years with co-worker
DS(27)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1071 | Registered: Dec 2008 | From: DFW
tushnurse
♀ 21101
Member # 21101
Default  Posted: 8:59 AM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

I have two patients that I currently follow with it. One had surgery is acutally worse now than before. Has debilitating headaches daily. Has had to quit her job, and is very depressed actually.
The other had the surgery, and is NOT any better.

Based on this information, and statistical information available and case studies available I would caution you to proceed with surgery. I would definitely encourage you to seek a second, or even a third opinion with the neurosurgery people, and have her see a Headache specialist.

Lastly I would encourage you to consider some alternate methods of treatment, and therapy. Including acupressure/puncture.

There are lots of other treatments from botox injections, to nerve stim to help treat headaches, and I would venture down that road before I consider neurosurgery.

I know this probably isn't the news of info you hope for, and I am sorry for that, but I do want you and your daughter to be well informed prior to making such a serious decision.


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 8798 | Registered: Oct 2008 | From: St. Louis
purplejacket4
♀ 34262
Member # 34262
Default  Posted: 1:21 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

Make sure you have at least TWO neurosurgeon's opinions before proceeding with that.


Me: BS 45
Her: fWS 48 (same sex partner)
Together: 18 years now (both MDs)
OW: meh so what 40s PhD
DD1: 10/30/11EA; DD2: 11/10/11 Had ONS; TT until 12/26/11; broke NC 6/12; NC again 7/12; R-ish

Posts: 2311 | Registered: Dec 2011 | From: Great Southwest
luv80smusic
♀ 17248
Member # 17248
Default  Posted: 1:26 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

One of my good friends had the chiari surgery about a year ago. She is still not at 100% but much better. She gets mild headaches almost daily but her main symptom is what she calls the "rocking". She feels like the room is rocking.

She always thought she had vertigo but now they are thinking it may have been chiari and vestibular migraines. She too was kind of a borderline chiari case. Some of her friends in the medical field thought she didn't need the surgery. She got multiple opinions and even went to the Cleveland Clinic several times.

I agree with tushnurse, get several opinions from the best doctors. Do tons of research. It is not an easy surgery and is a LONG recovery.

Feel free to pm me if you have specific questions that I can ask my friend about for you.



Betrayed wife
D Day 9/7/07
Reconciled yes 100% trust no

To forgive is to set a prisoner free and discover that the prisoner was you.


Posts: 623 | Registered: Dec 2007
cantbelieve
♀ 22028
Member # 22028
Default  Posted: 2:10 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

We are seeing one of the top Chiari neurosurgeons in Dallas. We have seen headache specialist, neurologist, cardiologist, ENT, neuro-ophthamologist, online consult with neurosurgeon in Los Angeles and Boston. She's had MRI's of the brain, optic, spine, MRVs, spinal tap. With all the results in and nothing showing up, we can't get a definite answer. She has talked to several who said they were so much better after the surgery. Her surgery would be minimal. Removal of a piece of bone, leave the dura and check the top point of the spine to see if it is pressing against her brain. I just don't want her to go through this and then it not help and she says "what if it helps" She is full time in college and has already lost a semester. She is studying to be a physical therapist and the classes are tough and she has to have good grades to get into PT school, she is dead set on having this done. It's been a year and she has gotten no relief and she wants her life back.


Me: BS (58)
Him: WS (59)
LTA 4 years with co-worker
DS(27)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1071 | Registered: Dec 2008 | From: DFW
tushnurse
♀ 21101
Member # 21101
Default  Posted: 2:58 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

I get her wanting ER life back and the what ifs but as someone who can see past today and tomorrow (you mom) urge her to a second neurosurgeon and headache specialist. I know Dallas has plenty of neurosurgeons ( and keep in mid these guys make a living doing surgery so they do push or surgery) I'm betting with new awareness of headaches and headache treatment you can find a headache specialist.
Sometimes people get the rep for being "the best" at something because they do the most, or spend the most on advertising. I know for a fact when they produce the magazines of the "Top Docs" for here it is done soully by paying your way. Of course the people who use that don't notice the tiny print of how they determine the "top" anything so they take it as gospel.

I would urged her to try massage therapy and acupressure/puncture. As someone who want to be a PT she should understand that it can have a greater impact than meds or surgery.


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 8798 | Registered: Oct 2008 | From: St. Louis
Rainbows
♀ 39362
Member # 39362
Default  Posted: 8:33 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

A friend of mine was recently diagnosed with it. We did a lot of research and found a Facebook group for people who have Chiari Malformation. It's a really active group that has a lot of information.

I'll PM you with the link.

[This message edited by Rainbows at 8:33 PM, May 8th (Thursday)]


There is always a rainbow after every storm.

Posts: 415 | Registered: May 2013 | From: California
jadedangel
♀ 26979
Member # 26979
Default  Posted: 9:25 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

We actually have a new resident that has this very diagnosis. I am still trying to learn about it and try to care plan for it.

There is many informative websites out there and there is online support groups.

I really do not have any information for you or your daughter. All I can say is do the research and to echo the others get more than one opinion.


DDay: I can't remember but there were more than one

Divorced 06/2007

EXWH passed away 8/31/2011


Posts: 428 | Registered: Dec 2009 | From: AL
homewrecked2011
♀ 34678
Member # 34678
Default  Posted: 9:34 PM, May 8th (Thursday), 2014View ProfileEdit MessagePrivate MessageHomepage

I know someone whose son has this. He had the surgery and is ok now... I think the surgery was in South Carolina.


Keep Calm and Happy On!

me BS 52
him - 46
married 15 years DIVORCED 10 31 12
children - ds15 ds12
d-day 12-19-11
I gave a 24hour ultimatum then went to attorney next day
Divorce filed


Posts: 2330 | Registered: Jan 2012
Topic Posts: 9

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