my 7 yr old was diagnosed with a 15 mm chiari type 1 and recommended for surgery not to be pushed off, the doctor also mentione da possible need of fusion, that really goot me scared when he told me the fusion would cause her to loose 40 percent of her neck movements in all directions. does anyone know about chiari being associated with the need of fusion, or the riskd s of not taking a fusion.
15 mm is considered a big herniation.The fusion ur r askin about is for cranial instability....one dr explained it as if u put a pumpkin on a pointed stick....it will not be able to stay at the top....it will slide down....this is y they do the fusion.
I believe many with this also have EDS...Ehlers Danlos syndrome...it is a connective tissue disorder and it is common in those with chiari.
My one friend has it and if u would like more info please let me know.
I know these conditions r very scary and overwhelming, but we r here and will help ne way we can.
the funny thing is my daughter does not haver any symptoms or pain or chiari symptoms (nor any eds symptoms) we just took the mri because of scoliosis appearing.
The "pumpkin on a stick" won't that get cured after the chiari surgery,
Do all Docs that treat chiari perform the fusions i heard that they tend to stay away from fusion do to the risks and results involved, if a fusion is necessary does that mean she is in risk of god forbid the pumpkin falling off the stick if not done rigth away,
meanwhile i will be taking more mris to see the severity of the level of fusion if necessary, we are praying that it wont be necesarry, because that would make her an "invalid" in a way for life..
Were looking into Dr menezes of Iowa or Dr Michael Scott of Boston's children hospital...
...as I said I am only going on what I heard at a conference describing what this condition was...the head becomes heavy and the patient has difficulties lifting their head...and because of it slipping down there is compression on the spinal cord...the fusion is an attempt to hold it in place above the spinal cord.....if u get the compression u will have the symptoms as well as possible nerve damage if left too long.
Funny u should mention Dr Menezes...he is the Dr that referred to it as a pumpkin on a stick!!....Good call!! He has a very nice personality and a nice sense of humor.I enjoyed his talk.
If u want more info I can give u my friends blog link....I also met a woman that had the fusion...she did quite well....she appeared to have a stiff neck.....I look like that alot without the fusion...so ....it is something u need to look into futher.
Hi I have chiari malformation type 1. It's at 5mm and has been at that size for the last 6 years. Will it get bigger or will it stay the same size? My headaches are very severe and I have too take several pain meds just to function. Would you recommend decompression as a solution?
Hi...We can not say if the decompression surgery is something u should do, but I will say u should deff see a chiari dr to see what he suggests for u.
The size of the herniation is secondary to wether or not u have a CSF blockage.
Symptoms also play a big part of determining if surgery is a possibility.
As to will ur chiari grow in size....it is possible...chiari can grow slowly with no nocticable changes in symptoms and then one day u r hit with major issues.
Chiari can also grow rather quickly and cause serious issues as well. A fall or an injury from an accident or jarring bumping into something can cause this to happen.A rife on an amusement ride...ect....
Everyone with chiari should be under a chiari drs care to monitor it's progression and to get treatment at the proper time.
If u have more questions please start a new thread, as it will be more noticable to our members.
First r u in the chiari forum or in ur home page....if in ur home page click on the My Shortcuts top right of ur screen....it is a drop down and then click on chiari ....u will then enter the chiari forum and u will see the top post is a welcome...please read this and to the left at the top just above the welcome post is a green button ...this is to post a question...that will start a new thread.
Hi I found out I had Chiari 1 in the hospital when they took an MRI I had a car accident back in Aug, they told me to do pt and chiropractic to help.. things only got worse! Especially after the chiropractic, my whole neck and head went numb after one session. I have had a multitude of symptoms since. Numbnesss, nerve pain in hands, and arms, tooth pain, trouble walking, dizziness, I could go on. I am going to the Chiari Institute in Long Island. I have two small children and a husband who is reallly not supportive... does anyone out there have small kids? I'm finding it hard to take care of myself day to day let alone my kids or husband. I only take advil, motrin and adivan for anxiety... Does anyone have any suggestions, do you have people come to help you? My sisters were coming to help for the last 6 months, but they are burned out and I don't feel any better, in fact I feel worse in some ways.. my equilibrium is bad. I also have bulging disks in my neck from the accident which started this nightmare. Michellle
Michelle....u will be told time and again...if u have chiari NO CHIROPRACTORS...thay can make it worse...we r even told to avoid a massage in the area of the neck.
TCI is very well known for the treatment of chiari.....I am also hoping to hear soon to go for an eval.
There r other members with small children, I only have one and she is grown and out of the house.....I no longer hold a full time job.....
Many of the symptoms u mention r what we all have had at one time or another.....chiari symptoms can cycle.....just when u think, mayb I'll be ok...u get hit with a flare and u can't take it.....ups and downs r normal.U will learn how to compensate in order to do things....
Do u know if they said ur chiari was aquired or congenital?...did they check u for a syrinx or tethered cord?....how's ur BP?
Finally do u have all ur MRI's on disk and the reports?...
As for ur DH ...have him watch the video's on TCI's web site...do not watch ur self.....wait till after the surgery unless u r ok with it.....but if he see's what all is involved and see's it can make a big difference....for yrs I complained with symptoms and issues and my DH was not affected until he went to a NS visit with me and read info online....
I hope this has helped....but know that is also y this forum is here...to listen, care and support u...and let u know u r not alone.
My son had the fusion along with 2 rods and screws. The reason was not only did he have chiari 1 but also a basiliar invagination. Did your docs mention the possability she might have it also .He had his surgery at the end of july and is doing great! He lost some neck movement but not much at all. Ive heard Dr Menezes does alot of these cases.
Has any one ever heard of Dr. David F. Jimenez in San Antonio, Texas who is head of the Nuerosurgery Dept for Adult/Pediatrics? He is scheduled to do my decompression? Any information is greatly needed.
I have chiari type 2. Had the surgery on sept 17,2001. I believe I was 18-22mm descended than. not sure now though as I have not had another MRI since. Recently I had a significant neck pain issue that got so bad, so quick, that I had to buy a recliner and sleep in that for 3 months because I could not lay down without pain. Has anyone experienced something this bad post surgery... so far along after surgery? I am now so scared to do anything physical or risk another episode.. Even swinging a gold club frightens me. FYI the surgeon ended up taking out the back half of c1 and c2 vertebrae to make room for the brain. Has this happened to anyone here... no fusion additionally. It worries me b/c my head feel very "heavy sometimes and I often wrap a throw blanket around my neck to take the weight off. the "pumpkin on a stick" comment in one of the posts above really scared. me. Anyways I am wondering if anyone has done specific neck strengthening exercises to help with the pain in the long run.
May I ask, was ur NS a chiari specialist?...were u chcked for other conditions related to chiari? Sometimes anoter undx condition may show it's head after a surgery.
[Chiari malformation type 2: A rare malformation where the base of the brain enters into the upper spinal canal. The extent of the deformity is greater in type 2 than type 1 and hence the symptoms are more severe and are often associated with a myelomeningocele (opening of the spine and spinal cord). ]
Chiari 2 is usually dx in children.
As far as ur concerns with the heaviness of ur head.....u saw my comment that was basically a quote that Dr Menzese (sp) said at a conference last July in describing cranial instability in which a fusion is done.
I am not sure what ur surgeon did removing part of ur vertebrae but cause instability...chiari specialists will remove part of the skull to make room and most use a patch of some kind.
U should also have follow up MRI's starting with a post op one and then every so often afterward.
Let us know where u live and we will try and give u names of specialists close to u, but please be advised most of us do need to travel to see a true chiari dr.
there is a tread chiari specialist thread....look at this list created by our members of their drs they have been treated by and liked.
I hope u continue to share ur chiari experiences with us
Hello Selma and thank you for such a quick response. My surgeon was Dr. Richard Ellenbogen. I live In Lynnwood Wa. and he works in Seattle so I did luck out to not have to travel far at all. He did take out part of the lower skull too. He said it was one of the worst he has seen that did not include a syrinx. I first started getting the pains at 13 years of age after playing sports year round since I was geez....6. It was really hard for me to quit sports and because I did not know what I had until age 18 I just kept popping anti-inflammatories and pain killers so I could go play some basketball, baseball, anything. So I am clearly paying for it now. My concerns about my neck are pretty severe right now. Just a year ago I wasn't having any neck pains and now everyday it is a constant power struggle between babying my neck, working full-time and studying for school. I came to the realization not too long ago that I will eventually be unable to work because of Chiari, so now I am in the mode of I need a quality education in order to get behind a desk in order to delay that day as long as possible. Has anyone out there managed to relieve there symptoms with neck targetting exercises. I find that massage and sacrocranial therapy helps but it hasn't gotten me too 100% and it is so expensive too. Any advice would help. I bless all of you cursed with Chiari.
It is a possibility u may have cranial instability......it could be a result of the previous surgery.I am not aware of an exercise that will work, I was told to try Feldenkrais Method by the NL at TCI- I just got the book snf have yet to read it.
Since u r having issues, u should contact ur dr.The drs name does sound familiar....I will look at our specilalist thread.
just found out that they want to do surgery on 7 yr old son,NEXT WEEK, talked to the dr. about a month ago and was told it was an option that we might want to consider at some point, then they call and say they can squeeze him n, pre-op on 28th, surgery on 30th, but wont talk to dr. till day of surgery, preop with someone else,.is this normal, the case manager doenst know or cant tell us anything, WILL ANYONE THAT HAS WENT THROUGH THIS PLEASE RESPOND, what do we have to expect? any help or persepective would be so appreciated
I have not been thru the surgery process as of yet, but we do have a thread called "How many Zipperheads" this is a place to find members that have had the surgery.
From the experiences they have shared, it will depend on the individuals symptoms and condition of CSF blockage and if the dr feels paralasis may occur or is starting as to how quickly they move forward.
Also, children do recover better the sooner these things are addressed, I would contact ur dr via e-mail and ask him/her to address ur concerns.
I am sure the members (zipperheads) that have been thru the process will coment.
I had chiari surgery about 4 yrs ago, it didnt help much still have bad head aches horrible jaw pain, any way my son was diagnosed last yr, my ? is how seriously should I have my Daughter looked at, she is 8 and complains of headaches all the time??? Any advice would help
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