Is a Chiari type 1 Malformation ALWAYS congenital?

[KRRAY87]

My husband entered into the United States Marine Corps at the young age of 17 in 2004 with no health issues (obviously not, or they wouldnt have taken him!).  In 2006, he was deployed to Iraq. While in Iraq, he was subjected to all types of explosions, and even in a minor humvee accident. He began to complain about headaches when writing home to me in his letters.  I thought nothing of it, just brushed it off as "stress" or "environment".  In 2009, after having some major mental health issues, he was screened for a TBI.  The NS at the VA diagnosed him with a Chiari Malformation type 1 with a 8-9mm decent.  My husband has tinnitus, sever headaches (he describes them as icepicks being pushed through his eye through the back of his brain), shoulder pain, and is very sensitive to sound.  The NS at the VA told us that this Chiari is "no big deal" and surgery is not recommended.  Do you think this is just to save the VA money? I would also like to know, could the exposure to the pressure associated with mortars and other explosions have caused the Chiari or caused it to go from asymptomatic to symptomatic?? Should we be fighting the VA to pay for a second opinion from an outside Dr. who specializes in Chiaris and does not receive a paycheck from the VA?  Can you give me a list of specialists within 200 miles of Spartanburg South Carolina?

[selmaS]

Hi and welcome to the Chiari forum.

I pray ur DH surgery goes well tomorrow...and his recovery is smooth : )

I am glad u found Drs u have such confidence in, but we do not suggest or refer members to Drs, we do have a thread with names of Drs that have successfully treated a member for chiari....we do wait until they r post op to add their Dr to the list to make sure they r happy with all aspects of their care.

Please keep us posted on how ur DH does with his surgery and with his staff of Drs. : )

[selmaS]

Hi and welcome to the Chiari forum.

I pray ur DH surgery goes well tomorrow...and his recovery is smooth : )

I am glad u found Drs u have such confidence in, but we do not suggest or refer members to Drs, we do have a thread with names of Drs that have successfully treated a member for chiari....we do wait until they r post op to add their Dr to the list to make sure they r happy with all aspects of their care.

Please keep us posted on how ur DH does with his surgery and with his staff of Drs. : )

[rdenisemm]

My husband is having decompression surgery tomorrow morning. He has a neurosurgeon at MUSC. Their NS department does around 30 of these surgeries each year, and he and the neurologist have been very supportive. I would highly recommend the Medical University of SC's specialists.

[selmaS]

  Hi and welcome to the Chiari forum,

Thanks for sharing that bit of info, we do have some of the same info here in our Health Pages.

This is one of the reasons we do ask the questions we ask, as there r so many diff things that can be affecting someone...and LP's r ok, if the tech is well informed as it can pull the herniated tonsils down further....so, once u have a herniation if u can get by with out one it can be the better way to go....as leaks often seem to result as well.

  If u r in the hands of a true chiari specialist and one is still suggested , I would agree knowing they would be the ones that know how to do them safely.

  Knowing if it is acquired or congenital is the question.....

[holdingfast]

Please, please look at the website for the Intracranial Hypertension Research Foundation.  One of the pages states that head trauma can cause IH. Another page has this passage:  "A Chiari malformation is often congenital. However, there is evidence that, over time, sustained increased intracranial pressure may cause an acquired Chiari malformation. While an acquired Chiari malformation can also be the result of overdrainage from an LP shunt or multiple spinal taps, some research suggests that an acquired Chiari malformation is eight times more common in chronic IH patients who have not had shunting procedures." I hope this helps.  Thank you and your husband for your sacrifices.  You will be in my prayers.  My husband has multiple-impact TBIs and suffers terribly.  He is on a trial of Diamox and IH has been mentioned, but so far that is all we know.  Hold fast to faith!  

[selmaS]

  Hi and welcome to the Chiari forum.

Thank you to both u and ur husband for his service and urs as well as I know the spouse also gives up a lot when the other serves.

To answer ur question...no not all chiari is congenital, but if it is not, it is usually called low lying tonsils bcuz the skull is not malformed...this does happen in utero...and someone with chiari may not be aware of it and could pass medicals for the military as they do not do MRI's to get in...and a MVA or a blast can trigger the symptoms he may have considered "normal" issues for him to worsen....this is y so may articles on chiari say it is not normally symptomatic until age 40 or so...which is crap, it just goes undx'd as the symptom/s r considered to be from other things and never connected together as from one issue.

We do have a list of Dr the members here have compiled of their own Drs.....the list is not a referral but a means for u to have a place to start researching Drs that have done and do treat this condition on a reg basis.

[Viva001]

My fathers experiences w/the VA leave a very bad taste inmy mouth.  He was a WWII vet.
I think these docs who say "it's no big deal" should be Subjected to even just a few of the symptoms we experience.  My dentist toldme that in dental school they practice on each other, so that they learn not to cause pain.

I'm not exactly sure where Spartanburg is,  but I'm in chapel hill, & myNS is near Asheville.

[linnielou232]

First please tell your husband thank you so much for his service to his country.  I'm a Marine Mom too so very proud of our military family.  I also suggest that he sees a Chairian specialist.  Selma has a list to refer to.  They are not referrals just people who have gone to these NS and recomend them. Scroll down to bottom of page and you should see the referrals.  Selma is our director here LOL...she is so informative and you will find the right answers coming on here.  I was lead in the right direction after finding this site.  I would think with all that you DH went through that it could be caused by all the stress, noise, and ecspeciall the accident.  Just let him know and I want to let you know your not alone in this.  We are like military family here except we are Chairians.  We help each other, support, and understand.  Welcome to the Chairian family.  Please seek a specialist out for your DH  he deserves nothing but the best.  We have all went through what we call the Chairian runaround.  Just keep being persistant.  Best of luck.
Linda :)

[Sexybare]

I am so sorry you had to seek us out. But welcome you to our chiarian family. Ot is likly the things your dear husbanf has gone thru have just progressed his chiari. You dont acquire chiari, you are born with this horrible condition. Its many times just brought out with diff types of things that happen to each of us or with time alone. Yes you should def seek a chiari specialist. There is a list on here but selma will have to point you in that direction for idk how to get to it. The va isnt to reliable. I know because my father goes thru them for other issues. But seek out a specialist please.  Dana