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785584 tn?1273249232

Dr. vs Radiologist

Radio says my daughter does not have Chiari.  Her family dr says she does.  I of course am seeking a 2nd opionion.  Meanwhile this poor girl is having alot of headaches!!!
I am sending her images to the surgeon whom did my chiari surgery.  I hope we get answers soon!  

None of us are doctors, but many of us have seen a lot of images!  So what do you think?

17 Responses
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620923 tn?1452915648
COMMUNITY LEADER

  Hi have u looked to see if the Drs are on the Ann Conroy Trust list?

Helpful - 0
5609526 tn?1370886461
I am having the same problem . Radiologist states that although I have brain overcrowding , 4 -5 mm descent of tonsils and a lack of cerebral spinal fluid - I do not have Chiari !
Needless to say I am asking for a second opinion from specialist in Chairi & Syringomelia at The Walton Centre in Liverpool UK .
Helpful - 0
1598790 tn?1297817917
Thank you for responding!  I happened to see this quickly while doing a google search...I have to figure out how to do my own post....
Helpful - 0
1175033 tn?1492201228
Cryscodoll,  and jorlex ,
we all know too well what you are going through, radiologist too have their opinion. Sometimes those opinions are not the same as others, and sometimes they dont note things that are there at all.  I have compaired many MRI's and the reports and there isnt much for protocol in verbage, one radiologist calls it tonsilar herniation, the other calls it Chiari, another doesn't note it at all. Sometimes the radiologist thinks it has been note before, so there is no need to note it again unless it has changed.

Cryscodoll, you need that second opinion. You should post a question on a new thread, you might get more responses that way. Do you have the report from the scans? If not it would be good to have around for you records.

Jorlex134,
  The pic you posted of your daughter looks like Chiari to me, but all radiologists are not the same. They might have measured it and lets say it was 4mm herniation, they wont say it is chiari, not fitting the 5mm criteria. This is what needs to be changed with our medical system, the way they diagnose it is its self controversial.    

Here a few examples of my experiences. I had a MRI in Jan 10 and Mar 10. The first scan notes my syrinx and a tarlov cyst, the second one says nothing about the Tarlov cyst even though it was still there. The second scan notes bone spurs contacting my spinal cord, which wasnt noted in the first one.   Then theres the bombshell (in my opinion) They measured my Spinal Canal through 4 vertebral segments and it was down to 10.3 and 10.4 mm.  I did some research and they note it as cervical stenosis at 10mm and below. So because It is not .3mm worse they didnt put it in my mri report, so no one but me and the radiologist knew that I have borderline cervical spinal stenosis which is a serious condition that could make my syrinx enlarge or even be part of the cause.
I also had a neck ct angiography, too see if my vessels were dissecting or something and they noted it as no significant abnormality's, even though you can see my bones and what is wrong with them, that was not what they were reviewing so they don't note those things.
Helpful - 0
1598790 tn?1297817917
I was having really bad headaches and I went to my doctor and he eventually did a CT scan.  The nurse called with results saying it was chiari malformation and see a neurologist, but they neuro doc may want to do MRI.  Well the neuro was booked weeks out, so I called my doc back and asked if we could do the MRI so I would already have it and be able to get more of a full overview of what my condition truly was.  The MRI came back normal, but when I thought I had it I did a lot of reading and my symptoms match almost to a T with chiari.  Neck and should pain, headaches everyday, the pressure in my head is so bad all the time...starts in the back of my head and goes all over.......I am still seeing the neurologist, but I am really frustrated because now they tell me it's simply just migraines......but from what I have read on some posts is that it's not uncommon for it to not be diagnosed by one radiologist from another....any advice?
Helpful - 0
Avatar universal
I don't have Chiari. I have had many MRI's of my neck due to DDD and I do not have the condition. My DD is the youngest of 8 kids. 3 of them were mine and 4 were my husbands and then we had her. 2 of my other children that are older now got a lot of headaches growing up but not the dizziness. My son gets migraines and sometimes sick to his stomach but his headaches are in a different spot. Now my  husbands family is a different story. My husband says he gets headaches like my daughter sometimes and his whole family has tremors like my daughter. He has one daughter that gets symptoms like my daughter but she isn't doing anything about it. I keep telling my one son to go get checked for his migraines and get some medication for it and also see what an MRI says.
My DD does get worse around that time of the month but I am sure that is to be expected just because she is female. We started the new medication last night and she did get sleepy from it so I have to see how she feels this morning. I am not sure about school and the medication. We are allowed to reduce it to 2x a day instead of 3 if we have to and I may have to skip the one before school. I am expecting her to not feel so well this morning because it is that time of the month plus on top of it I think it is supposed to rain today also. Another contributing factor in her headaches.
I hope this medication works. I am not sure about it though because she is already tired and this may make it worse but if it helps with the headaches what are you supposed to do. Trying to figure out what is best for your child is very confusing at times. I never know if I am doing the right thing. I am pretty sure you know what I mean. There is nothing simple to fix this. There are always pros and cons with everything, and we just have to keep figuring out which the best.
I would love to get some of this figured out before Sept. when she starts High School. She has missed a lot of school the last 2 years due to her feeling worse. It is a lot to deal with at such a young age. Some of her grades are not that great. She told me one of her teachers is supposed to call me because she is not working up to her potential. Just wait till she calls if she does I am going to tell her a few things about life with Chiari and see if she thinks it is that easy to function on a daily basis. Just ranting there. sorry.
Take care of yourself and i will keep checking to see how things are going with you and your DD.
Chadry
Helpful - 0
785584 tn?1273249232
They did her blood work twice now.  But I'm not sure what all they were testing!  I think it's the elimination game right now.
Thanks for that, I'll ask about it!
Helpful - 0
1179332 tn?1297478990
Just wondering if they have done any other blood work on her?

I've been researching a little bit for my own reasons and some of those things could be related to other conditions. Have they done anything like an ANA test to rule out autoimmune conditions? Some of them are confused for mono and some of them affect the kidneys too. Chiari and AI's seem to run together and there seems to be some evidence that one triggers the other. Might be something to check out while you're waiting...it can be ordered by your GP.

Carolyn
Helpful - 0
785584 tn?1273249232
Thanks for sharing that with me!  Do you have Chiari as well Chadry?  My daughter saw a migraine specialist a year ago and yes we keep a record.  
What is odd she used to get bad headaches once a month around time of menstruation, then something changed.
She got a really bad headache and slept non stop for days.  They told us she had mono, then said it was her kidneys and now they feel its the Chiari.
She takes Maxalt for pain.  What helps is the med knocks her out and she sleeps through it!
Helpful - 0
Avatar universal
My daughter has Chiari also. Her first 2 sets of MRI's a few years ago said it was 1 cm. She had one in sept. that said 6mm and then another at the same hospital a few weeks ago that said 6 mm also. We had an appointment yesterday with her specialist and I questioned then about the difference. They said that everyone reads then differently and they can measure then differently.These doctors don't go by what the radiologist writes. They compare them themselves to see what it looks like. Hers is maybe a bit smaller but generally the same. They are trying her on a medication for her headaches that is an antihistamine to see if it helps. If it does then she may be getting migraines. There are so many symptoms of migraines that are the same as Chiari. They know that when she laughs and gets physical that these are probably Chiari but the others may not be.
I am glad you are sending them elsewhere to be checked. It is a good idea to have another person look at them and get their opinion. I am getting the impression that Chiari specialist go by what they see and not what the report says.
Hope you find some answers to help your daughter with the headaches. I know i have to see my DD with headaches,dizziness, and nausea all the time too.
They asked that we keep a headache journal. Do you have one of them started? If not it may be a good idea to see when she is getting them.
Chadry
Helpful - 0
1179332 tn?1297478990
I agree with Selma...it does look like her tonsills are slightly out of place but it is hard to tell if there is a blockage. However, headaches and a crooked spine are a major sign of something being wrong so it is so good that you are taking action!!

Just for the record...I was told my MRI was fine too by a radiologist and my NL despite very SEVERE symptoms that I was having. It took my NS to look who noticed it right away. So...it is a case of finding the right dr to look which it seems you have already done.

Also, I live with the fear everyday that one of my children will have this...so it is only natural...we are following our instincts to take care of our children. You have every reason to have a suspicion with the symptoms she's having compiled with the fact that  you have Chiari.

I hope that you get some answers soon!
Carolyn
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Yeah it looks small but I can't say if there is nething else going on....not qualified.....wish I did understand these things a bit more, but with Chiari even if I was given a in depth explanation I don't think I'd remember most of it.

Well ur NS should be able to get some answers for u.....
Helpful - 0
785584 tn?1273249232
I thought I saw small protruding, should be interesting finding out what the deal is!  I need to educate the radiologists at our hospital!  What a battle it is getting someone who can read this!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi Jenny...ditto to what Shannon said...we understand how much u r praying she does not have this, but u need to know what u r being told is correct and that u can offer ur DD some relief....we send prayers for the same.

In looking at her MRI, I can see a small herniation....I am not skilled to see if she has overcrowding or a blockage and I know that other views and slices r needed to determine all that......

Sending her MRI to a true chiari specialist is the best way to go ......

Please keep us posted....

"selma"
Helpful - 0
785584 tn?1273249232
Thanks! I want to heal my daughter's pain!  I want to know what is causing this for sure instead of all these, "it looks like...." "it may be...."!  

The radio. that says her mri is clean, is the same hospital that said mine was fine, and i Had surgery 3 months later!!  

I'm glad her Dr doubled checked their work!
Helpful - 0
1041839 tn?1278681846
Well, i cant see the images on my phone, but i wanted to tell you that ipersonally had one radio say that everything was fine, one that said it was low lying ectopia, and two that said chiari. This is one of the biggest problems Chiarians face, IHMO

And honey we know you dont want her to have chiari, no one does! You just want answers so you can get her help! You're doing right by sending the films somewhere else! Blessings ~ Shannon
Helpful - 0
785584 tn?1273249232
You know I want to make it clear, I pray do God my child do not get this from me!  However I also pray for answers!  I am watching my little suffer from headaches almost daily.  She has a crooked spine and has herself on a toileting schedule as she can feel when she has to urinate!
I want to find out what the issue is for!  
Helpful - 0
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