Aa
|"@+"|#$^T excuse my french but! .....
I've just had my son's NL on the phone. My GP rang him about the symptoms my son was having. She's convinced he's having chiari related symptoms.
The Neuro says.. I need to put Chiari out of my head that my son is not having chiari symptoms. The loss of sensitivity he is having and the numbness and the burning sensation in his hand is probably anxiety. so are the headaches and the back pain. He says he can't be having any of these pains as he hasn't got syringomyelia. So... come on doc.. what has he got? Is it something even worse? What's causing these symptoms?
I"ve read peoples comments on sites where they say the doctors tell them it's all in their heads. But this doesn't seem to be in my son's head.. no.. IT"S IN MINE!!!! How can you put something like this out of your head? And how can my son be feeling these things if there's nothing there to make him feel it?
One good thing has come out of this. I told him my worries about sleep apnea and threw some statistics at him too. He's going to arrange a sleep study! Thank you God!!
And I've also learned my son doesn't have a syring. ( I didn't know if he did or not) Forgot to ask how many mm the Chiari is. I swear.. I'm being told nothing.
Oh.. by the way. All you people out there that get trembles? Well apparently that's not a symptom! Now who do I believe.. the people who feel what my son feels.. or the Neuro who thinks he's god!
The Neuro says.. I need to put Chiari out of my head that my son is not having chiari symptoms. The loss of sensitivity he is having and the numbness and the burning sensation in his hand is probably anxiety. so are the headaches and the back pain. He says he can't be having any of these pains as he hasn't got syringomyelia. So... come on doc.. what has he got? Is it something even worse? What's causing these symptoms?
I"ve read peoples comments on sites where they say the doctors tell them it's all in their heads. But this doesn't seem to be in my son's head.. no.. IT"S IN MINE!!!! How can you put something like this out of your head? And how can my son be feeling these things if there's nothing there to make him feel it?
One good thing has come out of this. I told him my worries about sleep apnea and threw some statistics at him too. He's going to arrange a sleep study! Thank you God!!
And I've also learned my son doesn't have a syring. ( I didn't know if he did or not) Forgot to ask how many mm the Chiari is. I swear.. I'm being told nothing.
Oh.. by the way. All you people out there that get trembles? Well apparently that's not a symptom! Now who do I believe.. the people who feel what my son feels.. or the Neuro who thinks he's god!
Your son's #1 advocate is YOU and Praise God, you are going with your gut and NOT going with the NL! Here is what I KNOW from experience on more than one occasion: If your gut is telling you your son's symptoms are physical and not mental, then you must not stop researching till you find the perfect doctor to help. What I am saying is----your gut is always right. And Praise God your GP is also on your side. My daughter's GP was the only one of about 9 specialists that listened to ME about my daughter!
Here is my daughter's story, who was 12 when she first started getting sick:
She had been battling on/off nausea for about 2 months when in Jan 2009 she had gotten so bad she couldnt even stand without being extremely nauseauos. Now through all of this she had'nt actually thrown up, but she felt like she was going to 24/7. She had a real bad "episode" Friday Jan 30, 2009 night and her pediatrician said to take her to Scottish Rite (in Atlanta). We couldn't even move her till that saturday afternoon.
Got her down there to ER and her weight was down to 81lbs. She had no food or fluids in 24+ hours. Well the ER experience was a complete nightmare. The 1st doctor came in and said she just needed counseling that she was having anxiety that is all. My husband believed the doctor and they sent us home. We got down the road about a mile and she was sooooooooo bad, I knew she was dying if we didnt go back. I MADE him take us back but WOULDNT let him stay.
Walked back in the ER and was told they couldn't see her again before 24 hours.........Well.......I told them " that is just fine, I have my blanket and my pillow, we will just lay here in the floor until the 24 hours has passed"........they took us straight back.......LOL
A NEW doctor walked in the room, took one look at her and had a fit! She got heads rolling and said had I not turned around and brought her back, she most likely would have died from dehydration. Her tongue was so thick, white and dry. I Thank GOD for the NEW doctor!!!!!!!
Well she spent 10 days in hospital, rapidly deterioration, right before my eyes with nothing more than an IV. She couldnt even eat ice she was so nauseaous. She was seen by a pedi, GI, Endo, Neuro, ENT, Pschy, and a child life counselor. They all came to the same conclusion "anxiety". GI doc finally put in a feeding tube exactly 7 days from last nutrition she had had. It worked to give her enough strength to eat lightly on her own. She weighed 76 lbs when she was finally strong enough to come home.
Well to make an already long story short.....I had done research on the internet while she was in the hospital and found that 2 professors of GI at Wake Forest University, Winston-Salem, NC were doing research on "unexplained nausea". Told her GP and he got us appt asap.
It was a 5 hour drive to WF from our home in Georgia, but worth every minute. We got there she had dropped down to 74 lbs! They ran a test and found she has "gastric dysrythmia" meaning her tummy rythyms are not working properely!
This professor spent 10 minutes talking to my daughter, turned at looked at me and said "I cannot believe the drs. at Scottish Rite thought she had anxiety. This is NOT anxiety. Her nausea is CAUSING her to have anxiety, NOT anxiety causing nausea." He then did a simple little HR - BP test and said "she has postural orthostatic tachycardia syndrome" (a.k.a. POTS) Sounds worse than it is, but basically her autonomic nervous system is out of whack. This is causing the dysrythmias in her tummy! It is so simple to treat and she will probably out grow it by the end of her teens!
So, my long story.......made long LOL is to tell you keep advocating for your son cuz no one else will!
Here is my daughter's story, who was 12 when she first started getting sick:
She had been battling on/off nausea for about 2 months when in Jan 2009 she had gotten so bad she couldnt even stand without being extremely nauseauos. Now through all of this she had'nt actually thrown up, but she felt like she was going to 24/7. She had a real bad "episode" Friday Jan 30, 2009 night and her pediatrician said to take her to Scottish Rite (in Atlanta). We couldn't even move her till that saturday afternoon.
Got her down there to ER and her weight was down to 81lbs. She had no food or fluids in 24+ hours. Well the ER experience was a complete nightmare. The 1st doctor came in and said she just needed counseling that she was having anxiety that is all. My husband believed the doctor and they sent us home. We got down the road about a mile and she was sooooooooo bad, I knew she was dying if we didnt go back. I MADE him take us back but WOULDNT let him stay.
Walked back in the ER and was told they couldn't see her again before 24 hours.........Well.......I told them " that is just fine, I have my blanket and my pillow, we will just lay here in the floor until the 24 hours has passed"........they took us straight back.......LOL
A NEW doctor walked in the room, took one look at her and had a fit! She got heads rolling and said had I not turned around and brought her back, she most likely would have died from dehydration. Her tongue was so thick, white and dry. I Thank GOD for the NEW doctor!!!!!!!
Well she spent 10 days in hospital, rapidly deterioration, right before my eyes with nothing more than an IV. She couldnt even eat ice she was so nauseaous. She was seen by a pedi, GI, Endo, Neuro, ENT, Pschy, and a child life counselor. They all came to the same conclusion "anxiety". GI doc finally put in a feeding tube exactly 7 days from last nutrition she had had. It worked to give her enough strength to eat lightly on her own. She weighed 76 lbs when she was finally strong enough to come home.
Well to make an already long story short.....I had done research on the internet while she was in the hospital and found that 2 professors of GI at Wake Forest University, Winston-Salem, NC were doing research on "unexplained nausea". Told her GP and he got us appt asap.
It was a 5 hour drive to WF from our home in Georgia, but worth every minute. We got there she had dropped down to 74 lbs! They ran a test and found she has "gastric dysrythmia" meaning her tummy rythyms are not working properely!
This professor spent 10 minutes talking to my daughter, turned at looked at me and said "I cannot believe the drs. at Scottish Rite thought she had anxiety. This is NOT anxiety. Her nausea is CAUSING her to have anxiety, NOT anxiety causing nausea." He then did a simple little HR - BP test and said "she has postural orthostatic tachycardia syndrome" (a.k.a. POTS) Sounds worse than it is, but basically her autonomic nervous system is out of whack. This is causing the dysrythmias in her tummy! It is so simple to treat and she will probably out grow it by the end of her teens!
So, my long story.......made long LOL is to tell you keep advocating for your son cuz no one else will!
I THIRD IT!!! If that is the only explanation that your NL can give you...it is a sign of imcompentence b/c they either can't or won't find out what is wrong with him!! It happened to me too and I just ignored it and moved on and I'm so glad I did b/c I may have still not had a dx and possibly been in a wheelchair by now!!
GOOD LUCK:)
Carolyn
GOOD LUCK:)
Carolyn
Tell that Dr to take a Flying leap and find another who knows something about chiari. I had a few drs tell me my symptoms were due to anxiety and I in so many words told them to shove it. My advice would be you do the same. No need to waste your sons precious time and yours on someone who isnt educated on the very thing you need them to be.
I dont understand why Doctors ignore (for want of a better word) the obvious. If CM is reported on an MRI, The patient has symptoms consistent with the MRI findings why do they dismiss it with "it's in your head"....
So if it is not CM that is causing the symptoms then what is, if it is in your head how do they draw this conclusion, what clinical test do they use, is this a definitive dx and what is the treatment....or are they discreetly telling us we are stupid.
"The physician should not treat the disease but the patient who is suffering from it."
Maimonides
Ray
So if it is not CM that is causing the symptoms then what is, if it is in your head how do they draw this conclusion, what clinical test do they use, is this a definitive dx and what is the treatment....or are they discreetly telling us we are stupid.
"The physician should not treat the disease but the patient who is suffering from it."
Maimonides
Ray
Thanks everyone.
Selma is right.. not so easy to get another doctor here. And Ray your right NL is an idiot. I have a great GP and I just know she's going to be fighting our corner. A week ago she knew little to nothing about chiari, But she was honest and told me this. She's done the same thing i did and looked it up and yes.. after examining him she also thinks he has Chiari symptoms. She's been my GP for over 25 years and I've always trusted her.
I will find another doctor.
I do believe my son's symptoms are mild compared to what most of you are going thru and have been thru. But if Neuro is not admitting he has any symptoms he's not going to be monitored.
I'm just glad I got him to agree to the sleep study. My son was on a monitor as a baby because he had sleep apneas back then.
Thank you to all of you. And thank goodness for the internet and this site. 10 years ago I wouldn't have had easy access to the internet and I would probably just go along with anything the NL said.
Jackie.
Selma is right.. not so easy to get another doctor here. And Ray your right NL is an idiot. I have a great GP and I just know she's going to be fighting our corner. A week ago she knew little to nothing about chiari, But she was honest and told me this. She's done the same thing i did and looked it up and yes.. after examining him she also thinks he has Chiari symptoms. She's been my GP for over 25 years and I've always trusted her.
I will find another doctor.
I do believe my son's symptoms are mild compared to what most of you are going thru and have been thru. But if Neuro is not admitting he has any symptoms he's not going to be monitored.
I'm just glad I got him to agree to the sleep study. My son was on a monitor as a baby because he had sleep apneas back then.
Thank you to all of you. And thank goodness for the internet and this site. 10 years ago I wouldn't have had easy access to the internet and I would probably just go along with anything the NL said.
Jackie.
I'm a Chiarian in our family, but I can emphasize with you about drs. dismissing child's symptoms too. My daughter was ill for 18 mths b4 correct diagnosis (malrotation small intestine) so I battled experts for her too. After surgery symptoms came back. 6 mths of tests all over the country. I kept saying it was the same thing. Drs. kept saying it can only happen once. Finally they did surgery again, and guess what, her intestine WERE twisted again (you can die within 24hrs with this).
They don't know everything.
Keep fighting for your son. It doesn't matter what they think of you. Change doctors. They are used to people getting 2nd opinions.
I'm so sorry you're going thru this.
Tina
They don't know everything.
Keep fighting for your son. It doesn't matter what they think of you. Change doctors. They are used to people getting 2nd opinions.
I'm so sorry you're going thru this.
Tina
Hi Jackie, this is a NL who is in the wrong job. Unfortunately this attitude is all too common.
So where to go from here. First assume until proven otherwise to your satisfaction that your sons symptoms are Chiari based (something is causing them).
Get a copy of your sons medical records including the MRI films. Your GP can say if their is a Syrinx or even if the whole spine was scanned.
Talk to patient Focus, you will get the phone no from the web site. They give good advice about travailing abroad for treatment.
It is better you find out now the kind of idiot you are dealing with rather than down the road....
http://www.patientfocus.ie/site/index.php
Ray
So where to go from here. First assume until proven otherwise to your satisfaction that your sons symptoms are Chiari based (something is causing them).
Get a copy of your sons medical records including the MRI films. Your GP can say if their is a Syrinx or even if the whole spine was scanned.
Talk to patient Focus, you will get the phone no from the web site. They give good advice about travailing abroad for treatment.
It is better you find out now the kind of idiot you are dealing with rather than down the road....
http://www.patientfocus.ie/site/index.php
Ray
COMMUNITY LEADER
HI...I know, u can not just go get a diff dr being in Ireland...I am sure Ray will help u the best he can ....and he is learning a lot on how the system works over there.
Hang in there.....u r dealing with drs that do not have a clue as to how to treat chiari....it is frustrating when we get one of those here...and it is diff to locate good drs here, but we have a choice....u don't...or it is not as easy as it is here in the states.
All I can say is hang in there : )
"selma"
Hang in there.....u r dealing with drs that do not have a clue as to how to treat chiari....it is frustrating when we get one of those here...and it is diff to locate good drs here, but we have a choice....u don't...or it is not as easy as it is here in the states.
All I can say is hang in there : )
"selma"
so sorry
my thought is GET ANOTHER DOCTOR.. NOW!! one who specializes in Chiari.
my thought is GET ANOTHER DOCTOR.. NOW!! one who specializes in Chiari.
COMMUNITY LEADER
HI...I understand ur frustration...I am sure the chiari and the syrinx r playing a large role in his symptoms...however, ur neuro is not well informed on chiari and syringomyelia to be of ne help.
The list of symptoms that r accepted by drs is small in comparison to what we all have in common...so we do have a list of chiari symptoms in the Health pages...that is a dr accepted list...then we are building our manifesto of symptoms...too big to call a list....
Take a deep breath and remember....when u r dealing with those that do not understand chiari...u get so much more confusion.
"selma"
The list of symptoms that r accepted by drs is small in comparison to what we all have in common...so we do have a list of chiari symptoms in the Health pages...that is a dr accepted list...then we are building our manifesto of symptoms...too big to call a list....
Take a deep breath and remember....when u r dealing with those that do not understand chiari...u get so much more confusion.
"selma"
I am so sorry to hear of what your going through. It's so sad that the m.d. after their name gives most doctors(not all) the God complex. You need to take your son to a neurosurgeon who specializes in Chiari. It's not you or your sons imagination. It's to common of complaints from thousands of Chiari patient to be not related. Don't settle for this doctor dismissing your sons symptoms. As a parent we know our kids and how they are so trust in that. Headaches are the number one complaint of patients with Chiari so what is he thinking. Good luck and find a doc to take him to that specializes in Chiari and I know you will be hearing that yes they are symptoms.
Sam
Sam
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