Just Diagnosed

[clarkew]

Hi everyone,
I was just diagnosed with Chiari after dealing with severe migraines, balance issues, fainting spells, and varying loss of vision for the past two weeks, as well as being in and out of the hospital and ER before finding the cause of the symptoms.
I have a 10 mm hernia and although the doctor classified this as a mild/moderate hernia, the symptoms have greatly affected my day to day life. I'm 17 and a second semester junior in high school and have been taken off my lacrosse team and have been asked to leave my after school job, as well as having new academic requirements that don't allow me to complete as much work. Because of the major impacts Chiari has already had, surgery is a probable option.
I guess what I'm looking for is support in any form. Maybe details from those who had to have surgery (did you need to shave your head/cut your hair, how long it took to recover, to what extent did symptoms continue, etc.) and if anyone has found affective methods of pain relief. Because this is a crucial time for me in terms of testing and thinking about college, I'm not being given any pain medication, so the day to day pain management is really rough.
Thanks so much, I really appreciate it.

[selmaS]

  No worries.....hmmm tachycardia, good to have the heart checked, but also ask about POTS..... Postural Orthostatic Tachycardia Syndrome as it is a related condition to Chiari.

Some with Chiari also have had seizures....some post op and some had them prior....


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[Genasmom]

Thank you so much. We have had a sleep study with CPAP. She didn't have signs of apnea, but she did have a sinus tachycardia, so next stop is cardiologist. She is 18 and just got a job at a water park. She is excited, but I am hoping she won't have any problems. She has already been told not to drive, as they are trying to rule out seizures. They just put her on Depakote and unfortunately it is making a difference. (She is hoping no seizures, as she is 18 and wants her driver's license more than anything.) She thrashes and screams in her sleep, which is why they thought she might have seizures. Anyways, I am rambling. I will look at the list of questions and get back to you. I don't know how else to message you, other than commenting here.

[selmaS]

  Hi and welcome to the Chiari forum.

First, know it is not the size of the herniation, but if it is creating a CSF obstruction so a CINE MRI should be done, as well as MRI's of the complete spine.....and a sleep study should be done to rule out sleep apnea...especially with children as they do not know how to explain if they have sleep disturbances.....then there is testing to rule out ALL related and non related conditions....

The list of Drs in posted in the Health Pages - http://www.medhelp.org/health_pages/list?cid=186

The list is not a referral nor an endorsement....but a starting place for u to research Drs. the list was compiled by the members here of Drs they have been to, treated by and liked....what works for one may not for another, so research, educate urself and see a few Drs and compare them and go with ur gut.

Know u may have to travel to get to a true Chiari specialist, and there is a difference btwn a NS and a Chiari specialist.

For what to ask, see also in the health pages ?'s for the NS......

But keep an open mind, write down what is said, and ask how to ask more questions once u get home and digest what all was said...some Drs will give an e-mail addy so u can ask more questions.

Knowing they the Drs should look at the entire spine to rule out a syrinx, and not just the cervical spine, and know that surgery does not cure this condition or fix everything symptom wise....if a Dr says ur child will be  cured, leave....as they do not have a clue......

Good luck and do keep us posted on how the visit goes.

[Genasmom]

My daughter had an MRI about a month ago which showed that her tonsils were descended 3-4mm. This doesn't seem like much, but after reading about Chiari Malformation, all of her symptoms make sense. We are going to the NS for the first time today, and I was just wondering if you have any advice or questions to ask. Also, can you tell me where to find the list of specialists? We live in Orange County, CA. Thank you so much

[selmaS]

  Hi and welcome to the Chiari forum.

First to address pain pre op....pain meds are best avoided, as u do not want to build up a tolerance and then they do not help u should u go in for surgery.
As far as hair, it depends on the Dr...some shave more then others, and I had a lot shaved off, but my hair was left longer and I was able to hide my scar with it....so don't worry about this aspect.

Stopping an impact sport is best, as it could trigger ur symptoms to flare...just as stress with ur school work can impact this as well.....

Chiari symptoms cycle and u most likely have had them longer then u think , but may have contributed them to something else.

Knowing ur daily life is impacted by this condition does not mean u require surgery as surgery is not a cure for this condition and post op u may continue to have symptoms...u will need more testing to see just how ur  overall health is affected by ur Chiari.

Rule out ALL related and non related conditions that can impact how ur recovery goes....

Last find a true Chiari specialist....Chiari is not ur herniation, but the malformation of the skull....and I despise Drs that classify ur Chiari by the length of the herniation....how can this Dr say it is mild?...Did he do a CINE MRI to see if u have a CSF obstruction?...Only that can help determine how ur health is being impacted by this condition.

Chiari is a life altering condition.

Know u r not alone <3