Forget about Chiari???

[Susan615]

My son has suffered from headaches and a multitude of other problems for 6 years.  He had an MRI 6 years ago and they noted the Chiari at that time.  The neuro treated him for migraines and never would adress the chiari.  He finally switched docs and they did another MRI.  He just got the result and it showed a 7mm chiari with no compression.  The doc told him to forget about the chiari, it was no big deal.  Is this right?????  He has every symptom that most of you talk about on this forum and basically his life is controlled by these symptoms and headaches.....

[WarriorMomma]

I am going to the Cleveland Clinic based off your recommendations. First appointment is This Friday. Chickened out on drive there last Friday and had to reschedule. :D

There is also the Cleveland Clinic and there are several Chiari docs there.  I only know what I have read about any of these docs.  Good and bad both about most... some more one than the other.  Can't talk about the bad here, but if you PM me, I will share what I've heard.  Of course, there are always good doctors whose patients have bad outcomes, but not necessarily the docs fault... it could have just gone too long without treatment.  Who's to say?

[dpulum]

Susan,

I live in Indy too and had a terrible time trying to find a decent doctor who knew anything about CM.  I got bounced around for almost a year from doctor to doctor, and my herniation was 20mm, so it wasn't that they were disputing the size of it, they just had a very limited view of what symptoms the herniation really causes.  I saw an excellent neurologist at IU, Dr. Karen Roos and asked her about having my surgery done there, she really felt like there weren't any NS in Indiana who had enough expertise in CM and she referred me to the Mayo Clinic.  After waiting to get an appointment for several months at Mayo, we ended up finding Dr. Heffez at the Wisconsin Chiari Center.  He was excellent and did my decompression and disc surgeries on the 9th.  Despite it being a few hours away, I really felt like I got the best care that I could've gotten, you might want to send him your son's MRI to see if he thinks he can help him.

Tina

[laratterman]

Susan,

I was seen by Dr. Puzio years ago for some of the problems that I was having.  This was after my first MRIs.  He was one of them who told me it was "irrelevant to my symptoms".  I don't think he knew anything about it... at least back then (probably 1999).

One thing I will mention to you is this... Whenever I go to the doc (and a lot of the times, because of my meds, I don't drive) I take my best friend with me.  She has known me for 30 years, has seen all of my best and worst days, and can relate to the docs who I WAS vs. who I am lately.  She can also keep me on track and keep the information in line for me.  I am not always able to do so, as I forget a lot.  And how much of that is CM and how much is medication, I'm not sure.

I do drive sometimes, but only on days when my symptoms are managable... these days are few and far between.  I will only take Aleve on these days so I can drive, but if my symptoms become un-managable, then I either go home or have someone come and get me so I can take my meds.  I don't trust my judgment or my reaction times when I'm taking them.  I don't deal well with the impaired feeling they give me.

Please let your son know that their are somethings that might come up at the doctor that may require big decisions.  Also, there will be times when you have to stand your ground with them and be reasonable, yet forceful.  You also need to know when you're on the right track or when you're getting no where and it is time to move on.  He really needs your insight and support with that.  I know how much I need this, even at my age!  This is a tough row to hoe!

Blessings to you!!

[Susan615]

You guys are awesome!  Finally some people who understand!  I think initially my son wanted to go by himself because we have dealt with this for so long and since it was a new doctor and he is now "older" he thought he should go and make the first impression.  It was killing me but I let him go alone.  I think if we go to a different doc, especially  one who specializes in Chiari, then his father and I both will go too.  I will check out Dr. Pritz and also Chicago would be close by.  He just saw Dr. Puzio and had seen Dr. Diokno in the past.  I am going to check out these websites you both mentioned too.  His list of symptoms is pretty long and figuring out which ones are connected will be interesting.  His HS was basically ruined due to this illness and it makes me sad to think of the things he has missed due to feeling this way and also what it has done to his self image to feel like the docs aren't really listening to him.  I had convinced myself  the MRI was going to show only a very slight Chiari, like a 0, although I have read here that even the slightest can cause great problems, but when it was a 7, I knew it must be the cause of this.  I know I have read people can have large herinations and not know and have small ones and be miserable.  Sounds like he is slightly above the standard range, right?
We are learning.  Thank you so much for your support and help!!  It does mean a lot!

[sherimom]

After reading your post, I found myself thinking that even though your son is an adult, it would be helpful ( and I imagine you'd feel better too....) for you to go with. I know when they get to that age, they are adults and want to do their own thing. But having you there as a second pair of ears, someone who knows his history (maybe things that he isn't aware of or forgot), as support or advocate....could be helpful. I'm notsure by your comments whether he wants you to go or not, but maybe some of these reasons would help to convince him if he is wanting to do this on his own. It's always good to have a second person with you.

I'm not sure how far that is from Chicago.....seems like it's at least a couple hours??? I believe Dr. Frimm is there (maybe at UIC) I know numerous people on here have gone there. Milwaukee is about an hour and half to two hours from Chicago and Dr. Heffez is there at the Chiari institute. He does have a website that lists some symptomsts and such, I believe it's wichiairinst.org or something similar.

I'm sorry he's having such a rough time of it. It's so hard when people don't believe you or think that you "want" to be diagnosed with something like this. The thing is that at least when you get a diagnosis, you can try to take action. Sitting and dealing with symptoms that puzzle doctors or having them think you are exaggerating etc....is very frustrating.

Don't give up.....hang in there. Even though he's "grown" he still needs you, even if he doesn't know it :-)

Sherri

[laratterman]

Hi Susan!  

I too live in Indy (Fishers actually).  I have only found one local doctor that has dealth with Chiari, but he is not really a Chiari specialist.  I don't really know anything about him, but his name is Dr. Pritz and he is at IU Med Ctr.

I won't go to anyone local for treatment.  I have suffered through the NL and NS **** about how this is a "benign finding" or "not relevant to my symptoms".  I am so tired of doctors I can't begin to tell you.  

My Chiari was found 12 years ago, and since the doctors made nothing of it at the time, I was more focused on my symptoms being related to a car accident I was in just before they found this on an MRI.  It has only been in the past two months that I looked back into my medical record history (the records I had a copy of) that I found the Chiari and started looking at it.  What I found was astounding!  It was like reading a website about me!

My brain MRI (then and now) showed a 5-6mm CM1.  I am, at present, arguing with my insurance company about the MRIs the Chiari specialists all ask for so they can determine whether or not you are a viable patient for them.  They allowed the brain MRI, but denied the cranio-cervical junction, cervical, and thoracic.

I can check off about 75% of the symptoms on the longer list of symptoms at:  http://www.chiarione.org/symptoms.html.  What I will suggest to you is that you should have your son list ANY symptoms he is having.  I had a lot of things going on that I would NEVER have related one to the other.  It's really amazing what can be related when you consider the symptoms of Chiari.  I would also suggest that the short list of symptoms are probably the more common of them, but that is just my speculation.

If you contact Dr. Pritz, he will request the MRIs I listed above.  Again, he is not a Chiari specialist though.  More than other local NS though, I would expect him to at least understand it.  My own plan of action is to have one of the specialists treat me, but to possibly use Dr. Pritz as a local doc... in case of an emergency.  But that's me.

There is also the Cleveland Clinic and there are several Chiari docs there.  I only know what I have read about any of these docs.  Good and bad both about most... some more one than the other.  Can't talk about the bad here, but if you PM me, I will share what I've heard.  Of course, there are always good doctors whose patients have bad outcomes, but not necessarily the docs fault... it could have just gone too long without treatment.  Who's to say?

I wish you the best.  Feel free to PM me if you need someone to talk to!

Blessings!

Lori

[selmaS]

Yeah, u deff need a chiari specialist as the NS that are familiar with chiari just do not know enuff and u need the best.

I can relate to the frustration both u and ur DS r going thru.

Most of us have been given meds for depression as well.That is of no help, at least it wasn't to me.

Depending on where u live u may want to check out the Drs Sherri  suggested or TCI in NY, or Dr Hampf inTN

[Susan615]

Hi,
  No, no doctor has every tested for or mentioned any other documented symptoms like the tethered cord.....the only test he has had is the MRI and then the doc said 7mm no compression. The first MRI the doc would not even tell us the mm.  He had one 6 years ago and then one 6 weeks ago.  He is sick and tired of being sick and tired.  I guess I must find a doctor that treats this.  This one was supposed to know about Chiari but the "forget it" comment and the fact my son had ask about the MRI results was appalling to me.  My son is 19, almost 20 so he doesn't want or need 'MOM" to go to the appoitnments but I was upset.  I think he actually got frustrated with the doctor as well.  We just want someon to take his symptoms seriously and help find and answer instead of treating him like he is just "depressed".  We have all been "depressed" at some point.  He is a young published author full swing in college and has a lot going for him but these CONSTENT symptoms make his life harder than it should be and some days it is all he can do to get out of bed.

[sherimom]

How old is your son now??  My son was 15 when he had the surgery in Jan 09 at Chiari Inst in Milwaukee.

He also was originally seen when he was much younger and it was dx'd then, but they made it seem like it was not a big deal. His was about 17 mm they thought....

He started having problems when wrestling last year and that is when it came up again. I shudder when I think of all the things he did that could have had long term serious consequences because the first neuro did not think it was serious.

Our family dr now is wonderful....when the MRI came back, he had us come in for results and we talked about what it meant, referrals to NS etc...

From what I understand, people with a 5 mm herniation or less can have significant symptoms and people (like my son) with more severe herniations have fewer symptoms. It really seems to be a case by case basis.  

Please try to find a chiari specialist....there is one in Chicago and in Milwaukee, not sure where in IN you are. You are right to be concerned especially if his symptoms are interfering with his activities.   Don't let the doctors downplay it.....see a specialist who can help you make an informed decision about treatment issues.  

hang in there.....you are on the right track.
Sherri

[selmaS]

I think u misunderstood we r saying has ur DS been checked for othe chiari related conditions...like syringomyelia.....tethered cord......Ehlers-Danlos.....

Chiari can affect the sinues....the problem is u did not have someone well educated in chiari.

Many of us do have sleep apnea and or sleep issues.

And many of us also have been given anxiety/mood type drugs as well......this tends to come from drs that again r not educated in chiari.....

Did u check out out specialist list?

"selma"

[Susan615]

Thanks guys!!  Yes, he has other Chiari related symptoms.  Chronic fatigue, vision issues, sometimes depression, feeling like he just can't make his legs move, generally unwell.  He loses weight very easily and used to play in sports ut now can't do it due to fatigue.  When he gets migraines, it is terrible.  We live in Indianapolis and we were so hopeful about this new neuro.  The initial one we saw for 6 years hoping she would somehow help but nothing got better.  The funny thing abou the new guy is he ordered the MRI 6 weeks ago, never called with results and my son had to ask him as he was walking out the door from the appointment to give him results!  he said, "Oh, the MRI, yeah you have a 7 mm Chiari and severe sinus issues on the right side.  You should see an ENT and forget about the Chiari."  My son tried to engage him a little more and he did some additional exams and said he showed signs of airway restriction and he could have sleep apnea and he ordered a sleep study and wants to see him back in JAN......!!  He put him on a migraine preventative that is also a mood stabilizer..?  and I can't remember the name but I think it started with a d and the doc said it was heavy stuff.  I don't get it.  Are we getting the right treatment and just can't accept it or is this not right??

[rod44]

ditto to what selma said.
Has he been checked for the other Chiari related conditions, he may need an MRI of his neck and upper back....

Ray

[selmaS]

Hi...sounds like the dr was not a chiari specialist.7 mm is larger than the 5mm for most to recognize.

Has he had a CINE MRI to see if her has a CSF blockage?......does he have overcrowding?
other chiari  related conditions?

If u can let me know where u live, maybe we can help u locate a chiari specialist.
There is a list of specialists here on MedHelp in the Health Pages.Please research all drs.

"selma"