just diagnosed

[crockettmom]

I just got th results back from my 13yr son MRI saying he has a 7mm tonsillar ectopia. Dr says not much to worry about unless h/a persists. Any ideas what this is and what to expect

[selmaS]

  Not sure there are activities to prolong surgery, but there are activities to avoid to keep symptoms at bay.....

U will need to find out if u have a syrinx and/or a CSF obstruction b4 u decide nething.....

The list of activities to avoid is posted in the Health Pages....if u need help navigating let us know, here is a link to the HPs.- http://www.medhelp.org/health_pages/list?cid=186

[Sobha365]

Hi Selma, What are the activities that can prolong the need for Chiari surgery? Thanks.

[selmaS]

Hi and welcome to the Chiari  forum.

No all Drs posted about are true Chiari specialists and we do ask that u see a few Drs and compare them...WE do not refer u to Drs, but do have a list that members have been to and liked....u should educate urself so u recognize one.

Let us know how u like this Dr : )

[Momofcsl]

We also were just diagnosed and in the Houston area. I assume Dr. Fletcher is a specialist in Chiari? We plan to see him. Thanks!

[zygy2]

That is great you have an answer and are getting surgery.  You made one statement though that is not clear and it is a statement that is too vague!  "you should not have surgery for headaches" "headaches can be treated" I have heard these statements too many times and it was this type of thinking that created a real issue for me to get help.  Migraines and other types of typical headaches can be treated to some extent and surgery is not right for just normal headaches BUT... cough headaches of a secondary nature such as Chiari REQUIRE surgery to be treated.  A secondary cough headache does not respond to meds unless you want to walk around on narcotics so that you can't feel them.  Not everyone with Chiari has these pains but for me, this was my biggest problem.  I could not do anything without grabbing my head in pain, any straining, bending, lifting, laughing, coughing, going to the bathroom... by the time I was seeking treatment just  movement could cause it.  Not being able to laugh was way worse than the numb hands or the dizziness or any of the other problems.  If my NL had not been so set on the fact that you don't treat headaches with surgery I could have received help much quicker.  The medical community does not have all the information and answers for Chiari and this seems to be one area that is misspoken often!  The Chiari Cough headache can be treated with surgery because it can't be treated with meds.  After my decompression surgery it felt amazing.  I have them back again because of complications with my first surgery but they should be gone in a couple of weeks when I have surgery number two and I can't wait!!!  IT is worth it to me to be able to laugh with my kids!  I hope this helps to explain this a little bit to you.  Good luck with surgery, it is quite an ordeal :)

[selmaS]

  Hi and welcome to the Chiari forum.

Well it seems ur Dr has informed u quite well!...There r many that do not get this info and I am glad u did....

I had surgery 2 yrs ago and am glad I did...I was having drop attacks...and had many other issues and had it to slow progression as well.

  We do have a thread to list surgery dates...I hope u will let us know when u r having urs so we can offer u prayers for a smooth recovery.

   "selma"

[ChiariWho]

I have been dx with chiari I and mine is 10mm, however, my surgeon has informed me the measurement doesn't matter as much as the crowding in the foramen magnum does. Mine is rather tight with little csf flow. I have vertigo, down beating nystigmus, numbness and tingling, muscle pain and weakness, trouble swallowing etc. etc.  *Something to know when considering surgery is headaches can be managed and rarely cause damage, so a journal or med therapy can be a good option. Spinal chord symptoms, such as the ones I have, rarely improve after surgery so it is done to halt progression. I have chosen to have the decompression done to prevent further spinal chord damage, for any that occurs beyond this point, will not be reversible. Waiting for things to get "bad enough" for surgery, could mean dealing with that level of "bad" forever! It was a tough decision but I can't afford things to get worse.

[selmaS]

  Hi and welcome to the Chiari forum.

  Many times symptoms of chiari cycle so they r often considered to be something other then what they really r, like the flu, or stress.....Drs miss the connecting issues bcuz of the hit and miss way chiari symptoms strike....until something like a  MVA , or fall happens to trigger them to flare all at once...then we notice them for what it is ...get a MRI and then the dx......

As for Drs, not everyone will live near a chiari specialist...but we do have a list that is compiled by the members here of their own drs....U do need to research all drs to find the one that is right for u-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

The list is not meant as a referral, but a means to help u get started with ur research.

   "selma"

[cewilcox]

I am 22 I was recently diagnosed with chiari 6 months ago when I was rearended by a dump truck and my migraines and spasms tensified. I have had all the symptoms since 13 they thought I had feibromyalgia for all these years of doctors and pains. I have scene a neurologists and going to see another without insurance I don't have many options. I live in little rock,ar anf haven't found any specialists. Any information will help.

[selmaS]

Hi and welcome to the Chiari forum.

May I ask was his NS a true chiari specialist?
Was he checked for a syrinx, or tethered cord?...IIH?...EDS?
We do not recommend a dr for u, but have a list of drs of the members here...we add them after having had surgery if we liked them...u have to do research to find the dr that is right for u.
Below is a link to our thread....I pray u r able to find one, and getting as much info on the condition helps u make the right choice.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

It is possible to also form scar tissue and that can cause a blockage of CSF....and the symptoms u mentioned.Keeping in mind surgery is not a cure, but a means to slow progression.

Please keep us posted on ur DS's progress : )
"selma"

[amema]

Please recommend a chiari malformation specialist in the Boston Ma. area. My son is 18 and had Chiari surgery 4 years ago a 6 hour surgery which was unsuccessful.  He has terrible balance and co-ordination issues and since the surgery has started getting migranes.  His neurosurgeon claims there is nothing else he can do.  Please help.

[chadry]

My daughter is also 13 now. When we found out she had chiari we were told not to worry about it either. Her's is 1 cm.
I took her to a few specialists after I started to research it myself and found out it is something to take seriously.
A chiari specialist is the way to go.
There are a lot of little things that can be chiari related. That is why a specialist is good to have and to answer any questions you may have.
Best wishes,
Chadry

[crockettmom]

thanx for the anme of Dr. Fletcher. I will make an appt

[youngwife]

Dr. Stephen Fletcher is, I believe, in the Houston area.

HTH!

Rebecca

[selmaS]

We do have a thread here with a list of chiari specialists...there may be some from TX listed.

"selma"

[crockettmom]

thanks i will look for the right specialist in the Houston area

i wull monitor his h/a's

[selmaS]

There r symptoms that he may have that he or u realize....ask him if he ever had a bowel movement where his head hurt with a sharp stabbing pain.....I had this since childhood, but I had no idea it wasn't normal.

I would deff get to a Chiari specialist to rule out other chiari related conditions like tethered cord, syringomyelia, intercranial hypertension......

I would agree to keep a journal of his HA's and any other issue he has in case it could be related.

"selma"

[crockettmom]

is this something that should be checked by a specialist. the nuerologists just wants me to moniter his h/a"s

[selmaS]

Hi and welcome to the Chiari forum.

What u described is chiari malformation.....sometimes people have more symptoms than others and sometimes it takes a long time for the symptoms to become so dibilitating that it requires surgery.

There r activities to avoid to prolong the need of surgery.

"selma"