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Advice for my daughter
Hi, I am concerned about my daughter and have been for years. What ever it is it’s getting worse. As far back as I can remember Into her teens, she is now 27, she has suffered daily headaches and also migraines.and over the years has been getting more and more symptoms. Been to the doctors so many times it’s ridiculous, so now I am trying to diagnose her before I get her to the doctors again with some more info.
The symptoms she has and that has got worse over the last 1-2 years are ; constant headaches and sometimes migraines, Tmj, tingling and numbness in hand and arms, painful back of neck, chronic fatigue, depression, dizziness, sometimes chest pains, bad memory, there could be others I have forgotten. I keep coming back to this condition. Can anyone give me some advice, any ideas. Am I just barking up the wrong tree, I have to look into everything because I know she has something going on. I’m so frustrated with her being ignored by the doctors. Any help with be appreciated.
Thank you
Fiona
The symptoms she has and that has got worse over the last 1-2 years are ; constant headaches and sometimes migraines, Tmj, tingling and numbness in hand and arms, painful back of neck, chronic fatigue, depression, dizziness, sometimes chest pains, bad memory, there could be others I have forgotten. I keep coming back to this condition. Can anyone give me some advice, any ideas. Am I just barking up the wrong tree, I have to look into everything because I know she has something going on. I’m so frustrated with her being ignored by the doctors. Any help with be appreciated.
Thank you
Fiona
Scary for sure. Selma will weigh in soon I expect. She is a fountain of information. It sounds like your daughter needs a thorough neurological investigation. Particularly an MRI of her head and spine and perhaps assessment of her cerebrospinal fluid circulation in her head and upper spine.
It's a tough long journey usually to diagnosis I wish you speed and resources.
It's a tough long journey usually to diagnosis I wish you speed and resources.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Your daughter is fortunate to have you as her advocate.....
First, I must ask what testing has she had so far? DO you have copies of the test results? If not, go to the facility that did the testing and request copies on disk and copies of the reports.....there should be no cost or a minimal one, if you go to her Drs they charge for making copies and it can be very costly....
If there has been no testing then, some testing you may want to start with are MRI of the brain, cervical, thoracic and lumbaar spine, and depending on what it shows a CINE MRI of the brain /cervical spine....this is to check CSF flow.
In order to get a proper DX you need a Dr that is well informed and trained/experienced with Chiari , Syringomyelia and ALL related conditions....
Many Drs, even those that have experience with Chiari will only accept some symptoms as Chiari related....so it is important to rule out all other possibilities since many comorbid conditions can have similar if not the same symptoms....this makes it difficult to pinpoint a condition AND know which condition is causing a particular symptom....
If you need help locating Drs to research, let me know what area you are in and where you can travel to, check your INS to see where you are covered.....I can post a list of Drs for you to use to research Drs as the list is not a referral nor an endorsementof those listed.....
May I ask, what may you consider this condition as a possibility for your Daughter?
Your daughter is fortunate to have you as her advocate.....
First, I must ask what testing has she had so far? DO you have copies of the test results? If not, go to the facility that did the testing and request copies on disk and copies of the reports.....there should be no cost or a minimal one, if you go to her Drs they charge for making copies and it can be very costly....
If there has been no testing then, some testing you may want to start with are MRI of the brain, cervical, thoracic and lumbaar spine, and depending on what it shows a CINE MRI of the brain /cervical spine....this is to check CSF flow.
In order to get a proper DX you need a Dr that is well informed and trained/experienced with Chiari , Syringomyelia and ALL related conditions....
Many Drs, even those that have experience with Chiari will only accept some symptoms as Chiari related....so it is important to rule out all other possibilities since many comorbid conditions can have similar if not the same symptoms....this makes it difficult to pinpoint a condition AND know which condition is causing a particular symptom....
If you need help locating Drs to research, let me know what area you are in and where you can travel to, check your INS to see where you are covered.....I can post a list of Drs for you to use to research Drs as the list is not a referral nor an endorsementof those listed.....
May I ask, what may you consider this condition as a possibility for your Daughter?
1 Comments
Hi, thanks for your reply, sorry it’s been so late.
We live in the Lowe have the nhs, although free medical help, I feel it’s not very good. She has had no tests at all, I have been taking her to the drs since she was 15, they just don’t say or do anything except pain killers, it’s driving me mad not being listened to.
She has currently been referred to a mental health nurse due to her progressively worsening mental health which has been getting worse since she was a teenager. She has bouts of depression and anger issues, can this be another symptom or is it a separate issue? She has recently moved so she has signed up with a different doctor, I have told her as soon as she gets an appointment I’m going with her.
I feel so powerless, thinking something isn’t right but not sure what.
Any help with be greatly appreciated xx
We live in the Lowe have the nhs, although free medical help, I feel it’s not very good. She has had no tests at all, I have been taking her to the drs since she was 15, they just don’t say or do anything except pain killers, it’s driving me mad not being listened to.
She has currently been referred to a mental health nurse due to her progressively worsening mental health which has been getting worse since she was a teenager. She has bouts of depression and anger issues, can this be another symptom or is it a separate issue? She has recently moved so she has signed up with a different doctor, I have told her as soon as she gets an appointment I’m going with her.
I feel so powerless, thinking something isn’t right but not sure what.
Any help with be greatly appreciated xx
COMMUNITY LEADER
Hi...sorry I am not sure where you are reffering to as to where you live, Lowe? And you have NHS...can I assume that is a national health services?
Depression and anger issues can be due to havinng pain and it not being treated.....but there could also be something else going on, but let me share that when I was in High School I was sent to a mental heath professional and was treated that I was not really in physical pain but emotional pain??? I went to three sessions with this " professional"and the third time he said the exact same thing as in the other two sessions.....yoou do not have a brain tumor, you aren't going to die what do you want to do when you graduate ? Well since I had no idea where he got his info on a brain tumor from, since he did no testing.....and I was sure testing would have been needed to know what was or was not going on with me....so my answer to him was, I wasn't going to waste my time talking to him and I walked out.....it wasn't until I was 48 that I got my Chiari DX.....and 49 when I had my surgery.....it is very frustrating.....and depressing to deal not only with the sysmptoms but the medical "professionals" that really don't have a clue and refuse to say they don't know or take time to research it......
You are on the right track to look beyond what you have.....education is the best way to be able to recognize when you have found the right Dr.
Depression and anger issues can be due to havinng pain and it not being treated.....but there could also be something else going on, but let me share that when I was in High School I was sent to a mental heath professional and was treated that I was not really in physical pain but emotional pain??? I went to three sessions with this " professional"and the third time he said the exact same thing as in the other two sessions.....yoou do not have a brain tumor, you aren't going to die what do you want to do when you graduate ? Well since I had no idea where he got his info on a brain tumor from, since he did no testing.....and I was sure testing would have been needed to know what was or was not going on with me....so my answer to him was, I wasn't going to waste my time talking to him and I walked out.....it wasn't until I was 48 that I got my Chiari DX.....and 49 when I had my surgery.....it is very frustrating.....and depressing to deal not only with the sysmptoms but the medical "professionals" that really don't have a clue and refuse to say they don't know or take time to research it......
You are on the right track to look beyond what you have.....education is the best way to be able to recognize when you have found the right Dr.
2 Comments
Yes it’s the national health service and we are in the United Kingdom. Near London.
I will be going to her doctor with her and will be taking a lot of information with me. It’s time she actually had some proper tests. After 12 of constant headaches. Thank you x
I will be going to her doctor with her and will be taking a lot of information with me. It’s time she actually had some proper tests. After 12 of constant headaches. Thank you x
Have you see the Ann Conroy Trust of Drs names that treat Chiari? I am not famiiar with the Drs listed and I would suggest you use that list to research Drs but there is a list to use....
Your daughter is very lucky to have you in her life and supporting her through this journey. As a chiarian, they means more than you know
Can someone tell me the main symptoms of chiari malformation. Just need to confirm with my thoughts. Xx
3 Comments
Hi the main symptoms are headaches to the back of the head, with ANY exertion.....so laughing, yelling, jumping, pulling, even sneezing and having a BM will cause this intense pain.
That is the number one symptom that Drs look for in conjuction with a Chiari DX.
There are many more and it all depends on whom you speak to if they are in fact Chiari related, but since so many of us have the symptoms we created a list.....I will try to find that older thread and bump it up so you can look at what others have experienced
That is the number one symptom that Drs look for in conjuction with a Chiari DX.
There are many more and it all depends on whom you speak to if they are in fact Chiari related, but since so many of us have the symptoms we created a list.....I will try to find that older thread and bump it up so you can look at what others have experienced
Thank you xxx
Did you find the other thread ?https://www.medhelp.org/posts/Chiari-Malformation/Unofficial-Symptoms-List-/show/1192372
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