Daughter suffering from chronic headaches since sept

[Worriedmum74]

It started with what we thought was a pulled muscle in her shoulder after gym. The week after a sore throats and then abdominal pain and severe headaches 10/10 which made us go to a and e where they did a ct scan.
After further investigations they came up with nothing and so we were referred to a m.e.clinic.

I did push for a MRI scan of which they were reluctant but something had to be causing these constant headaches. They are there permanently. No let up.

My daughter 12, also has very bad knees pains. She struggles to get to sleep and headache is much worse on awaking. She also hiccups quite a few times a day.

In 2014 we were concerned as she had nystagmus and was seen at a and e on a few occasions. This got better but then obviously she has become ill again now.

The consultant rang on Monday to say the scan had shown a borderline case of her brain pushing on her spinal cord and she needs to be reviewed by a neurosurgeon within the next 3 weeks.

I am so worried.

I just need some helpful advice. Do these symptoms seem like she has chiari?

[selmaS]

Below is a compilation of comments from other posts on what questions to ask the NS.....sorry if there r dups answers too : )

Well.....until he gives u his dx and suggestions it can be difficult to have all the questions ready you will want to ask....so,

I suggest you have someone go along to take notes...because we can become like a deer in headlights and forget to write things down....

Ask how to contact the dr afterward in regards to questions you thinks of after you get home. Some may offer an e-mail addy for this type of communication.

You want to know how they do surgery if it is suggested....endoscopy.... bony decompression or PFD...w/ duraplasty...and what kind of patch. Bovine, cadaver, synthetic or own skin.

Will he check u for tethered cord...Ehlers Danlos....and other related conditions.

What % of benefits does he feel this will offer.

If no surgery then what treatment options are available..... pain management.....will he monitor you...how often.....

After surgery...how often will he monitor you.....

Is everyone in the OR covered by your insurance and do they get all the info when u sign up w/ the drs office.....how much do u need to do extra?

How long after surgery do u need to remain in the area?


Some other things you can ask is if he does not recommend surgery what qualifications have to be met to be considered a candidate and what type of treatments would help to alleviate or make some of your symptoms manageable? some doctors will vary on that....

ask him how many surgery's he has done per week/month for Chiari ....Ask him what his success rate is and ask how he handles complications from surgery if any.

Do some background research on the Dr. I found my Dr's name here before I even knew I had my appointment with him. Some websites will give patient survey ratings back to you. If he does recommend surgery ask what type of pain management regimen he uses. I will let you know of anything else I can think of.

What I did for my consult too was found a list of all chiari symptoms and highlighted all the symptoms I have experienced and marked down how often I had that....we do have a symptoms  list on the Health Pages here on MH..

..When I gave it to my NS he was surprised and it will help you too because I got so excited to see him I forgot to tell him some things I was thinking of

U may need a list C...in case he gives u another dx....that happened to me...I was not prepared for that.

Be as open minded going in.....I was shocked and forgot to even ask the questions I had prepared.
Take someone with u to keep you on task.

If your dr suggests decompression is for u...ask how many he has done...what benefits he feels u will get from having it...does he feel it can wait/or should you schedule right away....does he do endoscopic decompression's......what material patches does he use....does everyone in the OR subscribe to the same insurance as the one you have....I did not ask this to the NS, but did when I scheduled, and even then I was told yes and that was not the case.....ask for everyone involved and check with your insurance on all of them upfront.

If no surgery- you may want to know what he feels would help, and how they will be monitoring your chiari.

Depending on what other condition u may get dx'd with, you may want to know what kind of dr you will need to see for it.

Sorry for any duplication of suggestions.....or if I left any out...as I said this is a compilation of several members suggestions.

[selmaS]

  Related conditions that should be ruled out are, Syringomyelia, tethered cord,POTS, ICP, CCI, EDS, sleep apnea,retroflexed odontoid, baslar invagnation.....non related lymes, lupus and MS.

We do have a list of questions for the NS, I will have to search for the link and will add it to this thread.

[selmaS]

  Hi and welcome to the Chiari forum.

There are many reasons and conditions she may have those symptoms...but yes, it is possible they are Chiari....but there are so many conditions that have the same symptoms....make sure ALL are ruled out.

Take it slow and make sure you find a true Chiari specialist and you are comfortable and confident in...they should know about ALL the related and non related conditions that may come with Chiari....

[Worriedmum74]

Thank you for your reply selmaS.  I am not sure what type of questions i need to be asking.

What other conditions need to be ruled out please.

I am worried we won't see a specialist and just see a neurosurgeon. Her life is on hold at the moment. It's so horrible seeing someone you love in pain like this. She should be having a normal, fun childhood. So hard. This illness has taken over her life.

I really do appreciate any advice you can give. I'm so glad I've found this website.

[Worriedmum74]

She also gets back pain just below her shoulder blade