Chiari Malformation Community
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1336659 tn?1275890125

Hope you can help me

Hi All.
Please help me get some answers. My 14 year old son was diagnosed with Epilepsy in January. They did a CT scan and an MRI on him and informed me last week that he has Chiari 1 malformation. They knew for the last 4 months that he had it and didn't inform me or our doctor. When we went to see the Neurologist last week we gave him symptoms that we thought were for the epilepsy. But looking them up now a lot could be the Chiari. And some could be either chiari or epilepsy.
They say the 2 conditions are not linked.
He's having headaches that last up to 10 days. He sleeps up to 16 hours a day ( i know this could be the epilepsy meds)
His vision gets blurred, see's dot;s in front of his eyes and in school last week he said the words were all in the wrong place of you page. He's having some short term memory issues, back pain, neck pain, chest pain, racing heart and the latest one is hard to explain. He still has feeling in his hands and feet. But he's not feeling pain in them. He stubbed his toe really hard and although he knew he did.. it didn't hurt. He's also picked up a hot plate and didn't feel anything. My doctor pinched him all over (really hard) he could feel her pinch him.. but again no pain. My doctor things he's having some Chiari Symptoms.. but the Neuro says he's not.
He had a CT, EEG. ECG done in January.. MRI (head and spine) in February. Nothing more is planned and we won't see the Neuro again until December.
We are in Ireland. We have 19 Neurologists and 9 Neurosurgeons for over 4 million people. So not very easy to get a 2nd opinion.

What i'd really like to know is. What sort of tests are done. Is there an assessment test for mild symptoms? How is chiari monitored? What sort of tests do they do to see if it's progressive?  And do you think my son is having some Chiari Symptoms?

Sorry for making this so long and taking you in advance for you help
10 Responses
1179332 tn?1297478990
Hello and Welcome to the forum,

First of all, let me say how sorry I am that your are dealing with this with your son, I have 3 boys and can only imagine what you are going through.

There is DEFINITELY some Chiari symptoms there, in fact, with the loss of sensation to hot/cold I am wondering if he has a syrinx too. Did the do a full spinal (cervical, thoracic and lumbar) MRI ? If not, I would insist on a full spinal one immediately. Please see this link for more information of syringomyelia
I would ask your drs about this, who knows if they didn't tell you about the Chiari they may not have told you this either!!

Also, most of us have got NO HELP from NL (neurologists)..Chiari is more in a surgical field so I would find a good NS..hopefully one that specializes in Chiari. Here is the link to the specialist that others here have tried and liked, I know we have at least one member from Ireland so I hope his dr is on this link.
If you do not find one there, if you are able to travel, I would send your DS's scans into The Chiari Institute as they have the most informed drs there. Most of us have found that many NL and even some NS will discount the severity of this condition so you have to keep looking till you find the right one. Having only 9 to choose from, I can see that it will be extremely difficult...and really you should have a pediatric one if you can.

I have heard of several ppl who have had seizures with Chiari and have even been told they have epilepsy too. When the CSF flow is blocked, it can create intense pressure...I never had a full seizure but would get this feeling like my brain was shaking in my head..

Basically, Chiari is best dx by an MRI..some dr's do a CINE MRI too which studies the CSF flow so they can see if there is an overcrowding causing blockage. I don't know if they told you the herniation size or not, but that isn't really what matters, it is how much overcrowding there is and also if there is pressure on the brain stem. I had an EMG done and ENP (evoked nerve potential tests) done b4 I was dx...Those tests did not do a lot for dx anything though..
I too was never told about the Chiari on my MRI for 6 mos while I got worse. It wasn't ever brought up until I got a 2nd opinion from a NS.

If they are monitoring it, they should do an MRI every 6mos and you should report any new symptoms immediately but again, you should see a NS first b/c with his symptoms he needs to get an opinion from the right specialist!!

Again, all of the symptoms you described have been experience by others here..it could completely be Chiari related..

Take care and good luck!

1285653 tn?1288358629
Here is a link to some of the testing I have done. Awating results. Symptoms are some of what many of us deal with. Praying for you and your son. Good luck!

1336659 tn?1275890125
Thanks so much both of you.
I've looked at your links and it helps to know others are here an experiencing the same things.
Today he had numbness in his right hand that lasted over an hour and then he got confused, hyper and acted as if he was drunk. The later of these symptoms could be epilepsy. Along with the worry of both illnesses I worry that the symptoms can be simular and all they keep doing is upping his epilepsy meds. He's on a pretty high dose now. I also worry that the Epilepsy meds will mask the Chiari symptoms.
He was a Prem baby. He was born at 29 weeks. Does anyone know if there's a connection?
I'm sorry i'm asking so many questions. It just feels like the hospital are pushing this away as if it's nothing and don't even want to talk about it.
I did ask if there was a syrinx present (this was in a phone call to the epilepsy nurse as she's my only contact with the Neurologist) She just kept repeating the same answer. "Nothing else has shown up to cause concern" I kept asking..but does that mean something did show up? But just got the same reply again.
I'm just glad I have my own doctor on my side. And I have found a group like this one. I don't feel so alone now.
Thank you so much
1285653 tn?1288358629
My left side goes numb sometimes. Arm and Leg. My office calls me Gimpy when it happens at work. You describing your son like this helped me: "Today he had numbness in his right hand that lasted over an hour and then he got confused, hyper and acted as if he was drunk." Itm explains why my parents asked me if I was doing drugs when my symptoms started going downhill....fast. THAT explains it. My body was all out of whack. Didn't realize how obvious it was to others. :D

I was not premature so I don't know if there is a connection there. Never feel bad about asking questions here, most of us have went through a LOT of drs before finding one that new about Chiari. It's a hard road, but definitely managable. Good luck.
Avatar universal
"It's a hard road, but definitely managable. Good luck. "  Thank you for the encouragement.  I needed to read those words today. I can't begin to tell the number of docs I've been to and meds I've been put on up to this point.  The road has been rather rocky and lonely thus far.  I'm glad to know things will change!  :)
1179332 tn?1297478990
Same here I have numbness on my left arm that comes and goes...and my left leg is the worst one too. I too, have looked like I was drunk but mostly b/c of my unstable gait...It did bring back memories to b4 my gait got serious where I would have these bouts of feeling like my legs were wobbly and I was walking "off". So those things too could be one or the other.

You have every reason to be concerned b/c it is possible they are sweeping the Chiari symptoms under the rug...mistaking them for the epilepsy. Here's a thought: request to receive copies of the pictures and report from the MRI. It is everyone's right to have those things, but I live in Canada so I am not sure of the procedure in Ireland. Ray was just on here and you two should really connect he is from Ireland. I will PM him and see if he can give you some advice. I would start with calling the MRI place or writing them and requesting these things.

Glad that we can help, this group is priceless for the same reasons for most of us :)
999891 tn?1407276076
Hi Jackie, I see you are a Jackeen not just by name lol I'm down the road from ya in the real Capital....

Sorry that your son is having problems with Chiari. Do you know if they have done a full spinal MRI? As others have said there are related conditions that need to be ruled out.

I would suggest that you get a copy of all medical records, MRI and X Rays, you will need to apply under the FOI, send a note to the hospital medical records department, it will take a few weeks to get them.
You should get a Neurosurgeon with experience of CM and unfortunately they are scarce in this country. You may need to travel to the UK.
For now I would talk to your GP about getting seen by a NS and move on from there.
If you do have problems getting appropriate treatment you can chat with someone from an advocacy (  http://www.patientfocus.ie/site/index.php ).
Keep us updated on how you get on....

1336659 tn?1275890125
OH thank God!! another Irish person who knows about this.  All i've seen is blank faces everytime I mention Chiari. I had a feeling that I could get the records under the FOI... but wasn't sure. Can you tell me if your hospital was good at communicating with you and you GP? Ours hasn't even sent my doctor anything on his Chiari or Epilepsy.

I'm not sure if it was a full spinal.. but he did have a spinal. I did think it was strange to have a spinal done for epilepsy.  I just feel I can't trust them now that they kept this from me.
It feels like almost everyday he's coming out with a new symptom. He now has a burning sensation in the side of his right hand. (really hurts if you touch it) I don't know if it's still there this morning he's still sleeping.
I wouldn't wish this condition on anyone but so good to meet people who know what he's going though.. and so good to meet someone closer to home.
Ray.. do you ever go to A and E with your symptoms? I'm so tempted to run everytime he gets a symptom just so that it's on record there. I really do feel they are ignoring any symptom that has anything to do with the Chiari. And I feel like they are treating me like a right Eejit!!
Thanks cmoeller for the connection. Thanks everyone for your replies. I am reading them all.
Thanks Ray

P.S. I'm too excited about meeting you to come up with a reply about the "Real Capital" LOL
999891 tn?1407276076
HI Jackie, I have been to A&E many times but unfortunately the doctors there have not come across CM and so will try and treat the symptoms not the cause, usually unsuccessfully.
I had to research CM and explain it to my GP, She got one letter from the Neurosurgeon witch was vague at best. I was first treated for what they thought was Menears Disease witch is an inner ear problem because I was having problems with my balance. eventually they did an MRI witch showed the CM, a Syrinx (cyst in the spinal cord) and some other problems. I had to explain CM to my GP when the NS wrote to her with the MRI results, she admitted she never heard of it lol.
I get the burning in my hands as well, there are 3 nerves supplying the hand, one runs on the outside (little finger) and that area goes numb and the burning, I think it is a nerve issue.
I think you should get your sons records and the scans, you need to apply in writing and you may need to bring Identification to the hospital. Address it to the Freedom of information officer, each hospital has one, you can then get your GP to look at the scans and try and get a referral to an NS. Ask the NS how many CM patients they treat, this will give you an idea of the experience they have, you can then decide what your next move will be..... The surgery is quiet invasive and is not a cure, the goal is to improve quality of life, it is some thing that one should rush into. Keep a record of each symptom, how bad they are, cycles etc, new symptoms and any other symptoms, bring this record with you to any appointments, it is so so hard to remember them all, keep notes of what the doctors say at each app.
Be careful where sports are concerned. Rugby and such contact sports are out at least until he has a doctor who knows this condition and can advise about it.

999891 tn?1407276076
sorry that should be "t is some thing that one should NOT rush into"

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