looking for info

[brooke1979]

I was just diagnosed with Chiari type 1 with a 15mm herniation.  The report also said the cerebellar tonsils wrap around the brain stem. Im not quite sure of the significance of that.  I have had headaches since childhood but they have been getting increasingly worse over the past 6 months or so... My neck is sore a lot. I have head and or neck pain every day.  The dizziness has also gotten worse and now when I wake up I see "waves" or swirls when Im trying to focus...this lasts several minutes. My legs will often feel as if Ive ran a marathon when I have done no strenuous exercise. I havent seen my neurologist yet as hes on vacation and Im worried! I want answers. Will I need surgery? If so how long will I be out? I am tired of being in pain every day :(

[selmaS]

  Hi and welcome to the Chiari forum.

  Send an appeal to ur ins company with a letter from TCI explaining ur mis dx and the extent of ur actual dx....u may be able to get them to cover it since  u need a specialist and u do not have one in ur state.

I also went to TCI and it was well worth it....also check with TCI's billing to see what u would be responsible for and then contact ur ins.....

May I ask who u saw at TCI...there r several NS's and NL's there.....

  The other possibility is do fund raising once u know what the costs will be and ask for help from ur community.

  

[lkb777]

hi, name is lisa, ive been suffering with cronic head and neck pain plus other symptoms for over 10 years. i live in minneapolis and ive seen 4 different neurosurgens who all said the same thing, im not chiari symptomatic. well they are all wrong! i learned of a Dr. in New york so i borrowed money and went to see him. Chiari institute. He instantly told me, yes i have chiari mal 1. also my tonsils are wrapped around my brain stem. finally, at last a correct diagonis after all these years of suffering. I need surgery but i have a great problem at hand. my insurance wont cover any out of state surgury. the drs. here have miss diagoised me for years. now im stuck again. i will not let these dr here touch me. they are not chiari experts... i dont know what to do..

[Sabbynal]

Hey there. Like you I had a large cerebral descent with my cerebral tonsils tangled through my vertebrae and spinal chord. I had surgery 2 months ago to correct it, and I am doing great. I had the same symptoms you have, plus a few weird and painful ones which have been gone since the surgery. My NS is awesome, and in the surgery he made me a custom fitted head to fit my escaping brain. I am all untangled now, and I have CSF flow to my brain. I tell you this to encourage you. There is help and there is hope. Find a great doctor and don't settle. This is the most important time. So many doctors don't listen. Many more don't know. Even the ones who do have some experience with Chiari might not be the quality specialist you need. And yes, my NS said that all my family should have an MRI, especially if they have symptoms. My pediatrician has added it to my children's family med history, and my siblings are scheduling MRIs now.  Better to know. I hope you get the best help possible, and that you see great days ahead of you. God bless you and your family.

[jenniferk86]

this can be caused by a lot of things.. it can be very similar to occipital neuralgia, a tightened or pinched nerve in the neck and skull area... some people that have chiari also have this and get surgery because they think the chiari is causing their headaches because the pain is so similar and then the surgery does not relieve the headaches because it was occipital neuralgia the whole time which is a whole lot less serious and much easier to treat.

[brooke1979]

Thank you all for your support :) Im also very worried as my 3 yr old has been complaining of headaches at the base of her skull (same as mine) for about 2 weeks.  Im concerned she may also have the malformation

[jenniferk86]

Also read the health pages posted here, they are wonderful sources for all sorts of info.good luck to you, and don't be too frightened as it is not a life threatening condition. try to look at the bright side and know that now you have a diagnosis and you can look into doing something about it. The recovery time for the surgery can vary, but from what I've read it's typical at 8 weeks to be released back to work. I've seen people feel well after 2-3 weeks, but even so it's advised to not do very much at all for a minim of 8 and others have set backs due to spinal leaks who we're hospitalized for a month (very rare). Although it is considered brain surgery, it is not associated with as much serious complication and risk as some other major heart and brain surgeries, meaning it can happen, but it is very very very rare that someone would die from this surgery. Again to stress the point chiari is extremely rare and not well known or understood by most neurologist and neurosurgeons..so it's the rest of your life and the quality on the line and it is of the ur most importance to find a chiari specialist.hope this helps

[sleepypea]

Welcome to our little family (:
Sorry you are having these symptoms. The most important thing is making sure you find a Dr. that is Chiari specialist. Not all Neurosurgeons are specialist in this area and can cause you much more confusion and frustration then real treatment and answers.

As most will tell you we have all had many set backs with this condition and finding proper treatment and the right Dr.. The good news is once you find the right Dr. you will know it!!

There is no cure for Chiari Malformation as it is a malformation of the skull. Surgery is sometimes necessary and beneficial as a means to relieve compression and restore CSF flow. A lot of times this will relieve some of your symptoms, but not always.
There are other test you will need to have done to help in figuring out what the best treatment method for you will be.

There is a list here in the forum of other Specialist that members have used and liked. You may want to scroll through and see if there is one in your area that you can meet with.

http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Here is the link to the Dr.s list. It is located in the health pages of this site.
Keep in mind you may have to travel a long way to see a true specialist, but most people will tell you it's worth it. Dr.s who are not familiar with this condition can sometimes play it down as an incidental finding or minimize it's seriousness.

Please keep us informed of your journey and know we are all here to listen if you you want to vent, ask questions, or just chat.

[zygy2]

That is a pretty big herniation and I doubt it is good to be wrapped around the brain stem.  I am so sorry you are suffering with this but is is also such a good thing to get answers!  To me it sounds like surgery will be in your future but obviously I am not a doctor!  It is not a fun surgery and recovery takes a while.  There are lots of surgery stories posted in these links, you can do lots  of reading.  Or just ask any questions, people are very good about talking about their experiences.  Everyone has different surgeries, complications and recoveries though so stories can vary a whole lot.  Just know it is not a fast recovery.  I just had my second surgery this week from a leak that would not go away, so I have spent over a year dealing with all of this.  Honestly, it hurts a whole lot but at the same time  I know it is making my life better and will be worth it when I am done!  Feel free to ask anything you want, I had my decompression surgery last year and my pseudomengecele repair this past Monday. The hardest part for you right now will be waiting for answers, I hope your doctor gets back quickly.  You  will also want to talk with a Neurosurgeon in the long run, a lot of us have problems getting a neurologist to understand the problems.  Hopefully your NL will send you to the NS! -zygy