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Chiari Malformation Community
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Avatar universal

recent diagnosis and freaking out

Hi all,

Son who is 14 just diagnosed after a "rule out" MRI due to persistent visual disturbances he has had for quite some time.  Opthamologist gave a clean bill of health. So, 7mm--more normally shaped tonsills. The MR csf flow study showed a decrease in flow.  Non RN patient care person said the decrease was "minimal" but that was not the wording given on the report--just said it was consistent with Chiari 1. So, she said if it was a big problem that they would have gotten a call from Radiology straight away and that it would have been an emergency.  Don't know what to think.  They are setting up a NeuroSurgery consult for us.

Symptoms are:

Ongoing Lethargy and fatigue
Migraine with and without Aura diagnosed in 5th grade.  These attacks are intermittent and minimal lately and can involve slurred speech and numbness.

Persistent visual disturbances---make it hard to read...flashing lights, floaters, visual snow.

Mental Fog ongoing--hard to focus, word finding and memory issues.

Anxiety

Intolerance to bright lights and loud noises

Occasional hand tremor

Occasional ringing in the ears.  Had persistent ear infections until age 2 and then tubes.  Produces lots of wax.

Regular headaches.

Cardiac workup due to chest pains and benign arrythmias

Breathing issues with running

As a baby:
Myoclonic jerk---looks just like a seizure...EEG was normal.
Feeding issues, gagging
Never slept
Reflux

Poor muscle tone diagnosed in grade school.
IEP in grade school due to speech issues and inattention

8th grade bad grades his final quarter as Depression has finally set in!  IEP now for inattention

I am afraid of surgery but equally afraid that that the surgeon will tell us that all these symptoms have nothing to do with " The Chiari".  

Any perspective is welcome as we are searching desperately for answers!  We have been to 8 different types of Doctors including Specialists----but not Chiari Specialists....finally the Pediatrician ordered an MRI

SOS

We are in the Chicago area
60 Responses
992677 tn?1537668903
Go to the Chiari Specialist!

Let's say you are making a batch of Jello for the reception of your dear Gandpa. His widow your Grandmother requested Red Jello. Would you make Blueberry jello? Of course not!!! If your son broke the forth meditarsual in his left foot and had a serious infection in the bone. Would you go see a gynecologist? OF course not both of those examples sound totally senseless do they not?

Well the need to see a 'qualified' NS specilizing in Chiari is just that simple! It is not an option. The only way you find an answer is to seek out and assertively see that specialist. This is not a case of 'oh any ol NS will work'.

Proof in point. There is a NS not too far from here, he has a very good reputation in the area. However about a year and a half ago a young man went to see him with severe subcranial [Chiari] headaches. This NS recognised the Chiari on a MRI and immediately preformed the surgery. This young man is worse off than before, way worse. In this case the problem was the surgeon, he is good, but hasn't a clue about chiari or what is or is not a trigger to warrant surgery or how to properly do the surgery. Long story but the poor guy is a mess and the surgery can't be undone.

JMHO- but don't waste your time anywhere else. Get your son to the NS with the proven track record with Chiari. There is a list here on medhelp of ones that have helped others.

Wolf
Avatar universal
I appreciate your post!  Many Thanks!
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

I understand ur fears.... especially drs discounting chiari symptoms...it is not uncommon, but usually bcuz the drs r not chiari specialists.

There is a Dr in ur area...Dr Frim....u should research him and see if he is still taking patients and pediatrics....I do not have first hand knowledge so u have to do some checking. Here is a link to our drs thread.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

The list of symptoms are all too familiar...have not heard the excess ear wax, but we r all diff and I am sure that could be unique to him or a few I have yet to encounter...I am open to hear all possibilities and open that some issues may not be chiari directly...but indirectly...I am sure is possible.

We r happy to have u join our little family here, but not happy for the reasons u had to seek us out.
We do have a few "moms" on here that u can share concerns with.

"selma"

Avatar universal
Sounds like everything but wax fits and it is a lot of symptoms.

We are willing to go to neighboring states or closeby

MN, IN, WI

I am surprised to not see any Chiari specialists on the list for Mayo clinic in MN as they are known for brain, skull...
1063386 tn?1287878569
Go to a speacialist.  And take a deep breath I know with our kids that is hard to do. Educate yourself with everything because most docs know very little about this and can either brush it off or scare u more.   My prayers to u and ur family.  I have this miserable disorder and now my 12 year old is showing signs.  I feel u.   Please keep us posted.
539750 tn?1226521677
You have to be an advocate for your son, prepare to meet a lot of "stupid" doctors.  Prepare for frustrations.  I saw an NS locally before seeing the specialist, it was night and day.  The first NS even told me the surgery was simple and it wasn't like I had a brain tumor and was dying.  So, yeah, he felt over qualified.  He said he would do the surgery, but wouldn't tell me which symptoms were related...because he didn't know.  He did say he had done the surgery, but wouldn't tell me how many times.  I even saw him twice, so my husband could go.  Then I asked HIM for the referral to see the other DR. It's worth the time and effort.

Just be prepared for some disappointment and frustration, both of which you can always share here.  We can related and we're a nice break from the non-virtual people in your life who might not get it. :)

Hang in there!!
Avatar universal
Do you think we are even in for a bunch of disappointment and frustration even with a Chiari expert?
620923 tn?1452915648
COMMUNITY LEADER
Mayo is a great place, but r not known for chiari as is the case with J.Hopkins.....they r great at what they do, unfortunately it does not include chiari....

Once at a chiari dr u will know what is chiari related and what is not...if the risks do not out weight the benefits, the drs will not offer surgery. A regular NS may, as that is how he gets paid...to operate......


It is the reg NS's that Kim is talking about with disappointing....and be advised, surgery is a means to slow progression, not a cure.Many horror stories happen when a patient listens to a fabrication that sounds too good to be true....once cut my the magic scalpel u will be cured and no more symptoms will bother u...sorry, that is not true...


U do have Dr Heffez in WI.....so , u might want to research and see if u like him.....

"selma"

1268921 tn?1288919056
Wow...so many symptoms that are consistent with Chiari...I totally agree with the group to find a Chiari specialist (NS)...that was the difference for me.  To go to an expert who connected the dots for me...it was empowering.  

FWIW--I had contacted Dr Heffez in WI before finding a Chiari specialist in Ohio.  I was really pleased with his correspondence, but never met in person.

Cleveland wouldn't be too far for you either (4-5hours?).  I go to Cleveland Clinic and have been so pleased with my care (I travel from Columbus, OH).  Dr. Xiao Di is my Neurosurgeon and Dr Lisa Lystad is my Opthamologist.  Many of my symptoms were visual.  Both drs are wonderful and knowledgable about chiari.  Going to Cleveland Clinic was the best decision I've made on this CM journey.

GL!!!!
Avatar universal
I have not been able to find a NeuroOpthamologist but wonder if we should check that out too.  He had a very complete eval with a regular Opthamologist and he said there was absolutely nothing wrong.  But---what if there is something tied in with migraines provoking everything despite the chiari finding????  

I guess the other thing is that the CSF flow on MRI showed a minimal decrease which leads back to chiari---the flow was also irregular which I understand is typical with Chiari----maybe the case is minimal since tonsills were 7mm and I suppose it is not that much.

This is so confusing.  Thanks for your consideration and help in sorting through.

Thanks so much
Avatar universal
Bummer that there is no cure---I think that one the one thing my son heard loud and clear and really bummed him out!!!!  I tried to reassure him that we will try to fix what we can!

I am surprised by just how few specialists there are.  So far there is nothing that can be done to take care of all the ocular symptoms and that effects school big time.  Also lost school due to headaches and then anxiety and depression come into play too!  Mental Fog is huge too.  The one unturned stone is Neuro Opthamology and that type of specialist is hard to find!

Thanks for the support!
Avatar universal
Anyone had any experience with the Illinois Specialists>?  Or Dr. Iskandar in WI????
620923 tn?1452915648
COMMUNITY LEADER
I agree with u....many articles on line saw chiari is rare, not so..we r large in number, it is chiari drs that is rare.

I do not have personal experience, but do know who Dr Iskandar is..,he is well know in chiari circles.

I am sure he would be easy to research.

"selma"
1063386 tn?1287878569
Jonata I too go to dr Di. I trust him so much it might be worth the drive. The entire staff at Cleveland clinic has been wonderful.  My 12 year old mentioned at my appointment her eye sight problems and he immediately took time with her.  She is to have her MRI next month. He was wonderful with her and took away fears not only she had with my deterioration. But her own health.  Wonderful wonderful man. And great bed side manner with a child ( I am a nurse and don't see pediatric docs respond that well). With that said 7mm 2mm 20mm. The size isn't what matters as much as the blockage. Mine is 4 but fat. A speacialist will tell u this as well. Sypmtoms are secondary to the csf buildup caused by a blockage. It is all very confusing. Please ask any question u have. Even knowing what I do I didn't understand a lot. I went to the doc I work for and she couldn't even answer her response was simple "isn't that an asymptomatic condition?". Which is what most docs are taught on med school.  Call every doc you can. (speacialists that is). Ask how many they treat with this. Ask how they schedule testing and visits. ( do to do many traveling distances. Many will lump things together for you.  Cleveland clinic I know does). And for u. Make sure they deal with children. Once u get some basic info you will feel the right choice and go with it. Once you have that apointment. If u still don't like what u hear. Go some where else. Good luck. And don't ever hesitate to ask.
992677 tn?1537668903
Thanks Jonata... glad it helped.

You mentioned 'disappointment with a specialist', well you do need to be prepared. As has been mentioned here this is a birth defect and as you know birth defects don't go away. However, much relief can be had through education and or surgery if it's needed. But the education and the learning your limits... well that can be frustrating if you allow it to be. Your child will most likely have his own perspective at that age of how he chooses to view this. That could perhaps be your personal hardest challenge. You see when someone, anyone, suffers from anxiety, depression or other similar emotional issues- which Chiari can trigger many- the person 'will' see things in their own reality and sometimes without education you can not make them believe what they see or think they see is not real. So educating yourself and helping your son to recognize what is a limitation in this way and how to cope is a major part of this IMHO. A kind calm mommy will make a difference. :-) You care or you wouldn't be here, that's the first step.

Now for Dr's... there are some good ones closer than Ohio. But after my experience with some of the IN and other Ohio Dr's you could never get me to go to anyone but Dr Di... if not him perhaps Dr Benzel. Both at Cleveland Clinic. My preference is Dr Di. He is very understanding and well take a look on the net at his achivements. He has reason to be a pious or proud individual. He is not though he very genuinely humble and an awesome listener. It would be a drive though for you and your son.

Well off to bed... never stay up this late! Oh well morning will still come just the same... :-)

Wolf
Avatar universal
Dr. Di looks good

his herniated cerebellar tonsills do not look like peg---more fat and round and I just don't know how significant the CSF flow is----don't know if the decrease or irregularity seen is clinically significant and that is stressing me out big time---I just don't have a perspective--I am stuck right now....
1179332 tn?1297478990
Hello and Welcome,

I guess mainly I am just posting to agree with everyone else....definitely go see a Chiari specialist, don't delay!!

Your DS (son's) visual symptoms are exactly the same as mine and I was also given a clear bill of health from an Ophtha, once way b4 dx and then again after. The second time, after I had surgery and knew what I had, I asked him how I could be having all these visual issues  yet nothing showing up in my eye. There could be two reasons: 1) The pressure is building up behind his eye (not in it) so then sometimes can't be seen, it would only be seen if it started to damage the eye. 2) The occipital lobe (the part of your brain which interprets visual signals) could be affected by the pressure and is very close to your cerebellum. If it is the brain itself, then again, it wouldn't be seen by an eye exam.
My opinion is, if you can find a neuro-ophta...then why not? But yet, I still think your biggest thing is to find a good Chiari Dr.,one who can see the whole picture.

I don't know what that person (the non-RN..) was talking about and I am pretty sure she didn't know either. Decreased flow is a big sign that Chiari is causing problems but I don't know one person where they found this and then shuttled them off the the ER (in a way it would have been nice!) Most of us have had a battle to prove that it is effecting us so badly and even when we do get dx, they tend to proceed very carefully as the surgery is not a cure and they have to weigh the risks.

I have seen you put down a few good names for a NS...so you are right where you should be for taking the next step. Until you see the NS, try and take a deep breath and relax...I know it's not easy...I have 3 boys and I know I would be panicking if they had what I do.

Take care and please keep us in the loop!
Carolyn
Avatar universal
I am esp. freaking due to high school starting very shortly.  I is hard to get good grades with the visual thing affecting reading and the mental fog.  But I think I have to take a deep breath and realize it is out of my hands except for appt.s, love and support!

It is just that being an analytical person I am always trying to connect the dots!  On the surface one would thing relieve the pressure and problem corrected----so it is not that easy!

The take home message my son got was that "there is no cure so you should just forget about it".  That made me pretty sad!
Avatar universal
Dr. Frim looks great---anyone first hand experience?
1063386 tn?1287878569
Well for starters no cure does not mean poor quality of life. Let put it in another term. Alcoholics that never touch a drink again are still alcoholics. But they are better in life after they stopped drinking. Tell him he will always be a chiarian buy he doesn't always have to suffer.  And as for school. I understand my daughter is struggling too and what I ended up doing to help get was have her read her notes into mp3 firm and listen to it she seemed to do better in the aditory than visual.   This can come in waves. Some days it may be visual. Others hearing just depends on where the pressure is and the brain is not bad. It is just being flooded so to speak. The area flooded doesn't work well ( think of roads that flood after a bad rain.  They aren't always out of order ) the brain is going to work like that. Some areas may flood more than others.   Tell him to use the open raids. So if today his eyes are bad listen. (my vision is most effected. I use a dark night mask so I can focus better with my ears and not get discouraged by the blurrs and spots). If the next day his ears are ringing and noise bothers him try picture associations. It is trial and error but he had no reason to be discouraged just has to take more detours than other people. It will make him a stronger learner in the long run.  Hugh school is hard and doing it with this huge hurtle isn't easy but my daughter still cheers and plays volleyball and dies well in school ( she knows she will never be the star player or the one doing flips but she just sticks to her limits and has fun). I would avoid football and wrestling but maybe he could enjoy golf or a less contact sport.   Best of luck.  As a mother I will say this. I have this so I understand what she is going through. But I still hate watching her suffer   Best thing to do is keep his spirits up. I have my daughter read these posts and I encourage her to reasearch things herself. She actually gave me the flooded road analogy. And nicknamed this the brain hemroid. I use humor with things and that has helped a lot.  Please contact me any time questions, concerns, or just to vent. You are not alone. My email is ***@****.   If your son needs to talk with someone his own age my daughter would gladly do so. Her email is ***@****. ( I screen her mails so let me know if he sends one so I don't ignore it). Most important thing from this very long post (sorry) is tell him the detours he has to take only means he gets a scenic tour on life. He will not take for granite things others may.  Just beacuse there isn't a "cure" doesn't mean it can't be managed.
1063386 tn?1287878569
Oh and sorry I typed this on my phone and auto correct seems to not like words I choose:    And email didn't show up. L u 7997 @ yahoo . Com.  Of course no spaces.   Any time don't hesitate.  You are nor alone
Avatar universal
I was just diagnosed and mine is at 7mm I have done all of the testing and my symptoms appear to be getting worse. It is so frustrating. I met with the neuro surgeon and they were prepping me for surgery, now all of a sudden the blockage seems to be mild and they do not want to do surgerys. Now the headaches, tingling, right side numbness, confusion, neck pains, dizziness they are saying that is from stress???? I am so confused. The neurologist and the neuro surgeon are saying two different things. I am only 37, fit and eat well. I have two kids and it has been so horrible. I almost died due to my blood pressure spiking and was causing a possible stroke. So they say I may not make it through the night and then the next morning they said I would not have, had I not come in so soon. NOW no surgery and he says just live with it. I AM so confused. any thoughts
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

The issue u r having could stem from the NS's not being true chiari specialists....if u r in the states we have a large list for u to research....mayb u could use another opinion?
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Please get copies of all ur MRI's if u have not done so already and going forward always request copies of reports and imagines for all testing including blood work.

Stress may be adding to ur symptoms,but not the cause of all this....and most drs r behind a chiarians stress : )

Have u had a CINE MRI?...a MRI of ur thoracic and lumbar spine?...was a syrinx  and tethered cord ruled out?

We r glad to have u join our little family here, but not happy for the reason u had to seek us out.

Know u r not alone in this chiari journey.

"selma"

979826 tn?1389036358
I know everyone has told u a million times about finding a specialist but just to make sure find a specialist!!!!!!! I had surgery with a pretty famous ns but not for chiari and I ended up having to find a new ns now dr heffez and having another brain surgery cause the first one didn't no what he was doing. And ur son is a bit younger then me but I'm still a kid I'm 17. So find a specialist!
Molly
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