New to Chiari - would like guidance

General Parents and Caretakers of Children with Chiari
1

Hello everyone and thank you in advance for your posts.

My 17 year old son was just diagnosed with a 7mm Chiari. Recently he was in the ER for what they thought was his apendix but ended up being bowel related. They perforned a CT scan wich ruled out apendix but found two lower lumbar herniated disks and an arachnoid cyst on thorasic spine, which lead to MRI's, that came back confirming the herniated disks and cyst but also found the Chiari, which then lead to the head/neck MRI. those MRI's confirmed the Chiari but luckily no diminished csf or syrinx,

Here is the wild thing about this, he has been having migraine headaches for over two years and has seen Dr.s for it and they just treated the symptoms.

In the past 6-8 months he has been having digestive problems along with extreme anxiety. The one type of migraine headaches that would creep up on him mainly at school or when he gets tired or stressed has seem to slow down but the more recent complaint of not being able to ride his BMX bike, work out at the gym with friends, climb the mountains here in Phoenix or when he is at work working his but off, he complaines his head with pulse and then it would move into this horrible headache at his temples with nausea and his head feels "jelly like"...

Just last week we saw a NS that confirmed his activity based headaches are from the CM. He said the herniated disks and cyst are not really worth worrying about at this time because of no back pain. (which he really never complains about).

The NS said he doesn't believe my son needs surgery at this point but at some point when my son feels the activity based headaches become life restricting he could consider the surgery.

So now that you have a little history, my real questions are

could his anxiety and IBS also be a symptom of CM, (the dr. didn't think so)

could his herniated disks and cyst be associated with CM, (the dr. didn't think so)

could his symptoms get worse. (the dr. didn't think so)

and would you also take the "wait and see" in regards to surgery.

Also if anyone is in Phoenix and can send me a private message with a CM dr. they love. It would be greatly appreciated, I would like to take all his MRI's and get a second opinion.

Thanks again in advance for all your responses, and look forward to getting to know you all better.

2

Thank you very much for the information, I have been doing lots of research and amazed at how many people have this condition and I didn't know anything about it until my son was diagnosed with it. I am happy with my NS suggesting we take a wait and see for now, we have had many discussions with my son about his activity induced headaches and now that he is aware of what is causing them he will be more aware and actually have a chance to possibly stop the headaches before they get too bad. He is being treated for his anxiety by his primary dr. and hope that will help with his stress level and IBS.

The NS he is seeing is on the list of recommended Dr.'s by members which made me feel better, he is also highly recommended by our primary Dr. But still interested in getting a second opinion just to make sure we are on the right track for my son. We live in Phoenix and would like anyone to message me with their suggestions.

I have read many of the stories on this website and you all are amazing people! I am so glad to have found you. I look forward to getting to know you all better!!

3

Hi Charsay and Welcome !!

The other ladies gave you great information. I think it would be good to have a second opinion. If it were my daughter I would. He is very active and having headaches are sometimes difficult. Please continue to let us know how your son and you are doing.

We also Look Forward to getting to know you,

Tracy Z.

4

Hi. I’m sorry for what you are going thru. I am 29 with the same symptoms. I have chiari. I have attempted surgery. Just in aug. 2012. My symptoms started young. My mom ignored what was happening. I missed the opportunity to fix this young and I have lost the ability to drive, or work. Don’t wait to take action and don’t listen to drs.
What I didn’t realize is most DRS don’t have experience with chiari, and they look at this as a chance to “learn” take your money. So many issues are caused by chiari. Vision, bowel, urinary control. Leg tingles, flutter heart, joint pain and degeneration. I am stunned by how it has changed my life. I can’t get excited without physical shaking. I am about to find a new neurosurgeon and attempt a second surgery. I am worried my problems are perminant. I have been medicated and shoveled to all sorts of drs. All telling me the same crap about how they can treat some of my issues but will not acknowledge my chiari, or the role it’s playing. I feel the anxiety very strong. It feels like I’m being pulled under water. Like im trapped in a dark cave with no air and no way to help myself. This is serious, don’t let simple under educated drs take your money and not help you. I did it for too long. Please push past the excuses they tell you. I see people on here talking about chiari institute in great neck NY. I hope that helps. Cause mentally and physically it will take everything away if its showing signs like this already. I can’t put on flip flops without almost falling over.
Good luck to your family.
I can tell your son has a strong caring parent. That is very important for recovery. And to get him thru everyday. Ky

5

@Charsay3. My son is 14 and is diagnosed with what the doctors refer to as borderline chiari. He has anxiety too. School and the pressure from school seem to stress him out more then the regular student. He gets tempular headaches frequently which the doctors state aren’t related to the chiari, although they really don’t seem to know much. Bouncing REALLY bothers him; no trampolines or bounce houses for him. He isn’t too active but prolonged activity seems to create a headache later. We are on the wait and see plan. He has learned to tolerate the headaches but he has this snapping/cracking in he neck that really bothers him. Keep us updated on what you learn.

6

Lots of great comments so far! I am fairly new on here. I think I joined when I was about 2-3 weeks post -op from my decompression surgery. I’ve met a lot of great people on here and it’s a great place to go for advise and encouragement. There are some stories that are scary but please also know that there are good stories too. I would totally agree with the others and your gut instinct to get a second opinion. I was the one who asked my PCP for an MRI because of my symptoms rapidly declining and that is when we found the Chiari. My PCP referred me to 2 NS in the very beginning. She said when it comes to something as serious as this, you need to have at least a couple opinions. In my case I saw so many specialists it made my head spin and that is when I gathered all my scans and sent them to a Chiari center. If you aren’t comfortable with what is being said to you and your son, you and him need to be your own health advocates! Keep going until somebody knows exactly what your son is dealing with! Good luck with everything!

7

I have a 16 year daughter that was diagnosed almost exactly a year ago with a 5 mm herniation again by accident while they did an MRI for migraines. She also has bowl issues at times and has had bad anxiety in the past all though it has seemed to eased ( the anxiety) I am also fed up with drs telling me her symptoms its not chiari related all though they can’t tell why she gets dizzy and passes out, but it’s not a chiari symptom and yet the studies related to chiari says it is. You are your only advocate for your son trust your instinct and fight for him if you feel they are wrong. There are not enough drs that know enough about chiari, but you know your son better than anyone. Someone just posted a wonderful pamphlet written by a dr to take to a dr. I would print it off and take to next dr. It can get worse, my daughters has over the past year, she had also not been recommended for surgery , but does get by day by day she’s. a strong active kid. She takes daily medication for her migraines which has helped. Good luck and keep us posted.

8

My 15 year old daughter had surgery April 2012. Previous to that she had tummy problems often. Since the surgery she has been tummy problem free! She also takes a daily probiotic (Digestive Advantage Probiotic Gummies) and they really help. You could try the probiotics and see if that helps :slight_smile:

9

Dizziness, passing out, bowel issues, neck issues… all chiari related. Have any of your children been checked for tethered cord? My sisters daughter is 5 and had 2 decomps with short term relief and post surgery found the tethered cord. She is seen at Duke in NC (had her decomps in CA)… I would recommend a Chiari Center visit as most Drs. and NS seem to shrug off so many symptoms. I was diagnosed last year after 5 years of symptoms and 6mo. of life altering headaches. My daughter was diagnosed this year with CM1 as well after my persistence (ER visit &5 different drs). I knew she had CM but noone would order tests. Now I suspect tethered cord in her and I suspect I have a syrinx. Docs don’t seem to think we need treatment for anything but migraine. What a pain! I have requested an appt. at the Denver Institute. My advice… you are your child’s best advocate. If you aren’t seeing improvements you are happy with in their overall well being… see someone else. Symptoms can get worse, herniation can get worse, and lots of CM1 patients are incorrectly diagnosed with anxiety. If your child is scared, limited or concerned find a Dr they like and again be persistent in getting the help you both think your child needs. Don’t give up!

10

Hello charsay3,

I am a 42 year old male who started complaining of head aches, tingling, and numbness when I was 14. It took until I was 37 to be diagnosed with ACM 1. Even then, I was told it was an incidental finding. I was put on large doses of Gabapentin, Lamictal, and Klonopin.

After doing some of my own research, I ordered several copies of all my scans and received got a copy of all office visits withe the neuros and all the radiologist reports. I made packets that contained orginal CDs of all scans (important to have originals - making your own copies often doesn't work), all radiologist reports, pertinent office visit records, copies of insurance cards, and a cover letter stating my situation and asking for help. I picked neurosurgeons from every part of the US and many would confirm their opinions without meeting with me. Others I went and saw. In all, I had contact with Dr. Heffez, Dr. Rosner, Dr. Oro, The Mayfield Clinic, US San Fransisco, US Davis, and a couple of local neurosurgeons.

I have had two decompression surgeries and am going in on Thursday for a C2 laminectomy since my spinal cord is tethered to my C2. What I would say is this: get as many different opinions as you can, pick the right surgeon for your son, and take your time to decide your course of action, but also know that if you send out a packet to 10 surgeons and 7 come back saying your son needs surgery, the odds are he does and in most cases surgery will put a stop to more neurological damage. I wish I had found the right surgeon when I was a teenager.

Do not pick a surgeon based solely on the prestige of the institution. I did this the first time and wound up needed a 2nd surgery because they didn't know what to do when a very small pseudomeningocele appeared two months post op. The surgeon and his/her skill set for Arnold Chiari is far more important than the prestige of a particular place. The list of links provided by Mandy at the start of the responses are great places to start. I would also add the following:

http://chiaricare.com/

http://www.mayfieldclinic.com/PE-Chiari.htm

http://www.chiariinstitute.com/

Please contact me if you have any questions/thoughts. Wishing you the best.

Jeff

11

Good Morning Everyone and thank you so much for the information.

My son is a very active 17yr old who loves to ride his bmx bike, hike, workout, and is very physically active working part time in a warehouse. As I was reading Abby's questions I was surprised at my answers.

Does he get fatigued easy? Yes, he complains he never gets enough sleep, even tho he probably gets 8-10-12 hrs. (I thought this was normal for a teenager. My other son was the same way.)

Dizzy? Lightheadedness? No, only when sick with flu/cold.

feeling of nervousness anjd anxiety? OMG his anxiety is out of control - the slightest thing will send him in a tizzy. He gets mad/angry so easily.(luckily does not get physical when angry- he is very vocal and will sometimes just sit and wring his hands and breathe heavy until he calms himself down.) His GP just prescribed a low dose of Prozac a few days ago, hoping this will help.

Weakness? No, he is very physically fit and has no weakness.

Difficulty thinking(brain fog),He does have a little difficulty when he gets stressed. but on a normal day to day he is ok. Although when he wants something or something is not going right for him, he complains his brain wont shut down, he complains he cant stop thinking about it. (Dr. said the Prozac should help with this also)

blurry vision? No

gastrointestinal complaints,YES nausea,YES cramps,YES bloating,NO constiipation, NO delayed empty of bms?He complains of just the opposite. He has 3-5 bm a day and eating will trigger them. He complains that food goes right thru him. lately he feels hungry but then starts to eat and he says he can feel the food moving right thru his system and sometimes gets nauseated and cant finish eating.

his last visit in the ER the CT scan detected a section of his bowel that was inflamed and suggested Inflammatory bowel disease or crohns. His GP ran a bunch of test and didn't think it was crohns more IBS. he is to see a GI dr. in a couple weeks and currently taking Bentyl to calm his bowels prescribed by GP

Feeling like your seeing grey or blackness ,Not grey or black, but complains he sees Red when he is having a headache

feeling faint when going from a sitting position to a standing position. Yes/NO, in the past, He would complain when he stood he would get a little dizzy and see stars and would have to wait 10-20 seconds before moving. but he hasn't said anything about this in years. I will have to ask.

hearing heartbeats in his ears? Yes/No. He complains he can feel his pulse/heartbeat in his head when having a headache but otherwise no.

Having trouble getting started in the mornings,Yes again I contributed this to being a teenager.

thirsty?No Feeling legs and arms are heavy?NO

Does he have a hard time regulating his body heat? We have a saying in the house...if your cold sit or snuggle with Steven (my son) he is always like a heating blanket. But he never complains of being either too cold or hot when he shouldn't be.

Standing too long?No.

If he answers a lot of these questions yes, then please let Beeba or myself know. He may have a condition called Dysautonomia or Postural Orthostatic Tachycardia Syndrome,

How do I get him tested for this?

So my search for a Dr. that I can get a second opinion with, just became harder. I will definitely have to do research for a Dr. that is knowledgeable with CM. I live in Phoenix AZ and would love any suggestions.

When I talk to my son about all this, his first response is "no Dr. is going to open this head" "no way". for now I don't bring the CM into the picture, I just ask him DAILY how he is feeling like - how's the head?, any pain? how's your tummy? I also say "tell me what you are feeling today" mainly this past week it has been his bowel and anxiety. he did have a headache at work but he totally over did it and blames himself for not stopping what he was doing because he was in a hurry to finish so he can go home.. teenagers....got to love them. :)

I would love any information on support groups in Phoenix if anyone can suggest that also.

Thanks so much! I really appreciate it and can't wait to have enough knowledge someday to pass the help/support on.

Charlene

12

I am 12 yrs. post op and had many of the symptoms your son has. Once I started blacking out, I had surgery. Though it took me a good year to recover, looking back if I had known how much better I would feel post surgery, I wish I wouldn’t have waited as long as I did (8-9 yrs.). I did have a follow up surgery in 2004 - I had a VP shunt inserted for an arachnoid cyst. I am still doing great, raising three boys (2 teens and 9 yr. old), working, etc. etc. Surgery was the best thing I ever did. My doctors remind me not to assume every symptom I ever have/had is Chiari related but also not to rule it out. Good luck - it is a very individual decision.

13

Wow, what great information!

I will definately do more research further and look for a dr. in my area that has knowledge of CM. Here I am thinking we were dealing with seperate issues...anxiety/IBS/CM but now pretty convinced they are all related. One more thing to throw in the mix. back in 2010 when we first saw a neurologist for his headaches, Before she prescribed him imitrex she wanted an EKG done. Well, I forgot that he did have an issue and we did see a cardiologist. I pulled the records and it said rSR pattern in V1 consistent with a conduction delay without a true bundle branch block. The cardiologist did find everything else to be normal and said he did not need any further cardiology follow-up unless something changed. I totally had forgotten about this. I am currently working on making a file of all his medical records/tests and going to make copies and get that second/ third opinion.

Thanks again for all the information!

14

Thanks Abby,

I have read thru all of these and thankfully he does not have any of these conditions going on. No skin/joint/hyperflexability/dislocations/bruising etc. but I will take information on EDS /Dysautonomia and present it with the rest of his information. I think he has a few symptoms of Dysautonomia.

As I do more research and I see all of these symptoms that go along with other conditions related to CM. It at times is overwhelming. Then I start to second guess myself and wonder if I am over thinking all of this and just looking for more things to worry about. But I know I have to be educated and be the best advocate for my son. So I am reading all of these conditions and printing the information so when i do find another Dr.for a second opinion appointment I will be well informed and let the Dr. make the correct diagnoses/connections

Thanks again!

Charlene

15

My 17 year old daughter is very similar to your 17 year old son. And as a parent it is so hard to see them suffer and know that there is nothing that you can do. I'm very glad that you found this wonderful website, I belong to several FB groups and a few sites like this and this one is by far my favorite to the point where I rarely look at the others.

My daughter was a very active volleyball player. She started having migraines when she was in 8th grade and when she was a Sophomore she suffered a concussion playing volleyball and the Chiari was found. The radiology report said 6mm, one NS said 7mm and another NS says 9mm...so it's somewhere between 6-9mm.

Since then, almost two years, her symptoms have gotten worse, she was recently diagnosed with POTS, and now talks frequently about wanting to have the surgery.

I purchased a wrist blood pressure cuff that also takes pulse and did some basic tests myself on her before taking her to her primary care doctor regarding POTS. He did similar testing in office and sent us to a cardiologist who specializes in electrophysiology.

We absolutely love her primary care doctor who has educated himself about Chiari since her diagnosis and will question certain things.

You are honestly doing all the things that I did when I first found out about my daughters Chiari. Educating yourself is key, without educating yourself you don't know what to question and what to ask.

We just saw the 3rd NS and the 3rd NL since finding out about her Chiari.....you have to be 100% comfortable with the person treating you. So far my daughter is most happy with NS #1 so that's who we are returning to again this summer for our annual visit.

I wish we lived in the same area so I could give you some names, but unfortunately we are in Illinois.

I wish you and your son the best with all of this. If he has any questions or would like to talk to someone his age my daughter would be happy to do so. She has made friends with a few different people her age and I know it helps her to talk to someone her age or at least close that is also going through the same things. Another thing that helped her was doing some research on her own as well. Good luck!!

16

Sisk71,

What an incredible message. You are also an Amazing Mother !!! You have done your research and are getting multiple opinions. Kudos !!! Your daughter sounds like a great teenager with a good knowledge of her CM. I am sure you are very proud. CM can be scary and difficult especially when you add POTS and you are coping well. Please let us know if we can be there for you or your daughter. We also have several teenage Members if you or your daughter would like introductions. This Forum is very special. The Members here are so giving and open about their personal journey & share information freely. Everyday I learn something new and am blessed beyond measure. I may be a Moderator but I get far more than I could ever give.

It's really great meeting you, Charsay, Brook's Mom, Jo & Stacy...I already know Joalexa. It's important learning from parents. Adult and Pediatric Chiari can be very different & it helps us to have such wonderful sharing parents. Thank you everyone else for such great information shared.

Thank you both,

Tracy Z.

Sisk71 said:

My 17 year old daughter is very similar to your 17 year old son. And as a parent it is so hard to see them suffer and know that there is nothing that you can do. I'm very glad that you found this wonderful website, I belong to several FB groups and a few sites like this and this one is by far my favorite to the point where I rarely look at the others.

My daughter was a very active volleyball player. She started having migraines when she was in 8th grade and when she was a Sophomore she suffered a concussion playing volleyball and the Chiari was found. The radiology report said 6mm, one NS said 7mm and another NS says 9mm...so it's somewhere between 6-9mm.

Since then, almost two years, her symptoms have gotten worse, she was recently diagnosed with POTS, and now talks frequently about wanting to have the surgery.

I purchased a wrist blood pressure cuff that also takes pulse and did some basic tests myself on her before taking her to her primary care doctor regarding POTS. He did similar testing in office and sent us to a cardiologist who specializes in electrophysiology.

We absolutely love her primary care doctor who has educated himself about Chiari since her diagnosis and will question certain things.

You are honestly doing all the things that I did when I first found out about my daughters Chiari. Educating yourself is key, without educating yourself you don't know what to question and what to ask.

We just saw the 3rd NS and the 3rd NL since finding out about her Chiari.....you have to be 100% comfortable with the person treating you. So far my daughter is most happy with NS #1 so that's who we are returning to again this summer for our annual visit.

I wish we lived in the same area so I could give you some names, but unfortunately we are in Illinois.

I wish you and your son the best with all of this. If he has any questions or would like to talk to someone his age my daughter would be happy to do so. She has made friends with a few different people her age and I know it helps her to talk to someone her age or at least close that is also going through the same things. Another thing that helped her was doing some research on her own as well. Good luck!!

17

do you know where I can find the Pamphlet you are talking about

Brooke's Mom said:

I have a 16 year daughter that was diagnosed almost exactly a year ago with a 5 mm herniation again by accident while they did an MRI for migraines. She also has bowl issues at times and has had bad anxiety in the past all though it has seemed to eased ( the anxiety) I am also fed up with drs telling me her symptoms its not chiari related all though they can't tell why she gets dizzy and passes out, but it's not a chiari symptom and yet the studies related to chiari says it is. You are your only advocate for your son trust your instinct and fight for him if you feel they are wrong. There are not enough drs that know enough about chiari, but you know your son better than anyone. Someone just posted a wonderful pamphlet written by a dr to take to a dr. I would print it off and take to next dr. It can get worse, my daughters has over the past year, she had also not been recommended for surgery , but does get by day by day she's. a strong active kid. She takes daily medication for her migraines which has helped. Good luck and keep us posted.
18

Thanks Mandy for posting that!

19

Thank you everyone. We are in the next phase.we have contacted another NS for a second opinion.