Requesting info on Chiari Malformation

[Stefaniejlow]

Hi Folks,  My teen daughter was diagnosed with a Chiari Malformation 3 years ago.  She had migrains we went to see an optimologist and they said her optic nerve were large.  I took her to Childrenss hospital here in Massachuesetts and they said the Chiari was not completely blocking the spinal cord so she was ok more likely a birth defect ( or so to say she was born that way).  she had been taking pain meds for the migrains. Howeve  in the passt three years she still suffers migrains and vision problems.  Her most recent eye exam the dr mentioned again having some sort of punchure test to mesure pressure? not really sure what this is or what this reveals?  this was brought up before by the neurologist 3 years ago but I was leary of punchuring anything on my baby girl:) has anyone had this test can you give me a little bit more info.  Also what should I be concerned about or know about the long term effects of the CM?  I guess I understood 3 years ago that she was born this way and it wasn't too much of a big concern but the optic nerve swelling is a concern for me.  how do they treat these issues?

thanks in advance

[Breezysmom]

Thank you so much for your response!  It's funny, my daughter started complaining this week that seltzer water tasted HORRIBLE!  I told her that it was probably a side effect of the Diamox and now I know!  I really am trying to be conservative and try everything they are suggesting from the Driscoll Theory, but I have a gut feeling that we are going to end up going down the surgery road.

With the weather as bad as it has been for the past few weeks here in Virginia, my daughter rarely even comes out of her room anymore except to say hi and hang out for 10 minutes.  Then she has to go back to her quiet, dark room because the rest of us are too loud for her.  We used to live in Florida and, coincidentally, 3-4 months after moving to Virginia my daughter got a sinus infection (or so we thought) and has had her headaches ever since.  

We do remember her leaking spinal fluid all the time out of her nose when this first came about.  I asked her if her headaches used to be better when she would lie down, and she thinks that they did for awhile.  Now nothing matters, she has them 24/7.  So now I'm wondering about LOW pressure instead of HIGH pressure (Driscoll Theory).  I hope that the cine MRI will answer our questions today.

I just realized that her MRI is not going to be far enough down to really check for syringeomyelia further down in the spine, but I guess that we will check for that later depending on the MRI results today.  I'm a mess.  I stay up all hours researching on the internet because I'm afraid to miss something, seeing as all of her doctors have completely missed EVERYTHING up til now.  Ugh...

Anyway, I hope that if we get in with the right chiari specialist they will efficiently check her for all related illnesses/disorders/problems.  Thanks for listening.  It really has made me feel so much better to be able to read the posts on this forum.  I can't say enough about how awesome selmaS is!  Shout out!!!  She is a God-send and a total saint!

[hevnw8s]

My symptoms did pretty good on Diamox. However my Neurologist told me it wasn't a good idea to be on it for a long time so she took me off once my headaches were getting somewhat better. It took a few months but they came back. I have not gone back on it.

The only thing that bothered me is I urunated a lot and your taste for anything carbonated changes. I couldn't drink soda or anything with a fizz because it make it taste TERRIBLE. My NL told me that was normal.

When it comes to making the best decisions for myself, I base it on how I feel. My symptoms have started to get worse and if I continue down this road, I will have the surgery. But if it isn't immediately necessary, I will hold off. I just had surgery on my spine for Tarlov Cysts which some say could be related to Chiari. No formal research has been done on it though.

I have learned to be kind to body as well. I rest when my body hurts and I try not to do anything strenuous. I have always been active...running, hiking, working out..but I haven't done that in 3 years. Walking is the only thing that I do for exercise.

[Breezysmom]

I have watched the Driscoll videos and that's how I got my daughter on the Diamox.  I know that there are people who are using the Diamox to relieve symptoms and to seemingly try to avoid having the decompression surgery.  (especially since not everyone does well afterward.)

Have your symptoms done well enough with the Diamox?  I'm afraid to have to make the decision to seek out a chiari specialist and look into surgery for my daughter.  I don't want to make the wrong decision.  I guess we will know more after her cine MRI tomorrow.  It's just that it is keeping me up at night and I have been somewhat obsessed with researching forums and other informational sites on the internet.

How have you made the decisions that you have for yourself so far?

[hevnw8s]

I just wanted to reiterate what selmaS said. I was on Diamox twice a day for almost 7 months. It took me just about 2 weeks to start seeing any improvement. I have to say it did help but there were times when my headaches would push through and I was in pain again. I truly hope it gives her some relief. Sounds like she (and you) have been through quite the journey so far.

Best of luck!

[selmaS]

  You may want her to try antihistamines like Dr Driscoll talked about in the video....I am on them for 3 yrs now and see significant improvement..it helps me sleep, and helps with my reflux....I do not totally understand the mast cell involvement but in reading and researching the symptoms it is possible it has an affect on most with Chiari.,

Deff talk to her Drs regarding this as I am only going on what I am reading and again lucky for me my PCP put me on the antihistamines b4 I saw Dr Driscolls video.

[Breezysmom]

Thanks for responding!  My daughter is not on any other medication at this time.  Nothing was working so we weaned her off.  Didn't feel good on anything.  Tried verapamil, amitriptyline (for almost 2 years), neurontin, several migraine meds she was supposed to take at the onset of a migraine.  NOTHING ever helped!  She even tried narcotics on different occasions out of desperation (Tyl #3, etc) but she only got rebound headaches!

She had the Evans procedure on her feet.  They cut into the side of her feet, through the bone, opened it a tiny bit, put in a titanium plate and screws and some bone filler.  Her feet are soooo much better now.  But the recovery was rough.

She's only been on the Diamox for 7 days now. (tonight will be her 7th dose: 125mg at night before bed)  Haven't tried the zyrtec/zantac yet but will start this weekend.  Dr. Diane made it sound like she and her kids got overnight relief, then had to adjust the dosage.  My daughter's pediatrician is working with us.  She has a follow up appt next Wednesday to go over the MRI results and talk about the Diamox.  I am going to print some literature for him.

Haven't officially gotten diagnosed or had anything else ruled out since finding the chiari results.  I self-diagnosed her EDS and POTS just by spending hours on the internet, including the chiari and EDS websites and forums.  I am supposed to make an appt at Duke University once we have the MRI results.  Maybe they can do the testing and diagnosing/ruling out at that time.

Any other suggestions?

[selmaS]

  Ho long is ur DD on the DIAMOX...I understand it is similar to TOPAMAX and there is a 2 week adjustment period....I was on it and said the same thing , it is not working and I am feeling worse, but it did get better after the 2weeks...so depending on what issues she has as a result of starting it, it could just be a matter of time.

Wow...what kind of surgery on her feet...that was one of the major issues I had was with my feet as well....I carried an xtra pair of shoes to work , tried all sorts of inserts...

Talk to ur Pharmacist to make sure there will not be ne drug interactions.....

Are u talking about to rule out  MS?

[Breezysmom]

Oh yeah.  Not sure about the CCSVI yet.  Seems like you need a special ultrasound or test for that??

Any input about that?

Thanks.

[Breezysmom]

As far as my oldest daughter, (17 year old) No sleep study or CO2 levels yet.  I just found out about her chiari 1 malformation 2 weeks ago (even though the MRI was 3 years old) and that's what started my "google research".  I have been on the computer for hours every day since then.  I think that I read one of your posts that suggested looking for other related illnesses, such as EDS, and that was how I found out about EDS, POTS, mast cell, CCSVI, etc.  Since then it has been CRAZY!!!

I went straight to my daughter's pediatrician when I found out about the chiari and asked for a new MRI.  Then I found out from Duke University that she needed the Cine MRI, so I took my daughter back to the pediatrician and asked for the Cine MRI and a trial prescription of the Diamox.  The Cine MRI is scheduled for tomorrow.  And the Diamox is not working at all.  I am going to make an appt for her pediatrician again next Tuesday so that he can give us the MRI results and look into changing the dosage on the Diamox and order a blood test for her CO2.

I figured out that she DEFINITELY has EDS and POTS.  (and so do I and my 13-year old daughter.)  She had reconstructive surgery on both feet after these headaches started because her feet had been hurting her for 5 years prior, and it was progressive. Plus she dislocated her knee prior to that just dancing around the house to "Single Ladies"!!

So...I have become her diagnoser, advocate, etc.  She has been out of school for 3 years due to her feet surgeries and then the persistent daily headache.  Every single doctor we have been to (podiatrists, orthopaedic dr, pediatrician, neurologist, psychologist) has heard about her long list of "seemingly" singular problems.  Why did "I" have to figure this all out????

This forum has been so helpful.  As I read other people's stories and questions I realize that we are all in this together. (Isn't that a song?!)  It doesn't make the pain better for my daughter, but it helps with the anger, if that makes sense.

I'm also going to start us all on the zyrtec/zantac.  We are all edgy and have some OCD symptoms.  Hope it works.  Not sure if it is supposed to help the Diamox or not?

Thanks for listening!

[selmaS]

  SO glad it has been helpful, I also have links to several of her video's as well as the one on antihistamines in the EDS group here on MEDHELP>,....

Have u had her C02 levels checked? a Sleep study?

[Breezysmom]

I noticed that someone mentioned that you had posted about the Driscoll Theory recently.  I was just about to ask about that.  I have been watching several of Dr. Driscoll's videos (Dr. Diane :)  and we just tried the Diamox for my daughter, but it hasn't worked yet.  I wrote to Dr. Diane about the problem and she told me to check with my daughter's doctor about changing the dosage and doing blood tests to monitor certain levels. (CO2 maybe??)

I strongly encourage everyone to check out her website: prettyill.com

It has been very helpful for me.

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari Malformation is a congenital birth defect...so if u have Chiari yeah, u have it since birth...and for many no one was able to tell us what was wrong for many yrs....that does not mean it is or can not cause issues.

The test for pressure most likely is a lumbar puncture, the cerebra tonsils can cause the CSF to build up and cause pressure, and the opening pressure during a LP will help determine if this is an issue.ICP or high CSF pressure can be  a cause of the cerebral tonsils to herniate and the herniated tonsils can cause the ICP...so u need a Dr to let u know which is the congenital condition, which came first.

For those of us with this condition we tend to adjust to it and the symptoms and consider many if not most to be "normal" ways to feel so ur DD may not complain about many symptoms as she has always had them and considers them "normal" and thinks everyone feels the same way.

The thing is ask her about different activities and what she likes about them and what she dislikes...u may find she has more issues then u first thought. Blowing up balloons, bubbles, riding the Merry-go-round, swinging on a swing, running ,jumping, yelling...lights flashing, florescent lights,loud  noise....or a very active location....

The other thing to note is chiari symptoms cycle so they can come and go for weeks, months even yrs at a time...but  stress, a hard cough or sneeze or a fall or MVA can trigger the symptoms to flare so we take notice.

There are far too many Drs that do not understand this condition so it is important to locate a true Chiari specialist....we have a list for u to use to research the Drs as the list is not a referral nor an endorsement.Be advised u may need to travel to get to a specialist, many of us do/did as it is well worth it....here is a link to the Health Pages - http://www.medhelp.org/health_pages/list?cid=186

[Jm_smalformedbrain]

Hi! I just joined this forum last night and I'm not an expert in any of this by any means. But, I can relate to symptoms. I was dx with migraines at 10. Severe, and have tried every medicine known to man since then and the only one that works is Fiorcet with Zofran for nausea. Sometimes I have to take several of those to even touch them. I also have tons of floaters in my vision and right eye pain. I was Dx with retinopathy of prematurity for this and they laser'd my right retina down a little bit. I was born at 2 1/2 lbs and 2 1/2 months early. Guess what? That laser didn't fix any of my floaters. I have read some medical articles that correlate vision changes and Chiari, as well as eye pain. I can tell you that as I am now 31, my symptoms have professed rapidly over the last 6 years and the Chiari is congenital for me. So, it will get worse as she develops and ages so I will have to disagree with your Dr on this one. Of course this doesn't account for everyone. Sometimes regular monitoring is all someone needs. I'd say, get a 2nd opinion. :) wish you all the best.

Jen