1st Doctors visit Friday

[tonya193]

If anyone can help, I need  to know what questions do I need to ask when I take my son to his first doctors visit since they have been looking at his chiari again since 2005. We had a MRI and a CINE MRI done they said over the phone that his first MRI showed a 9mm herniation and they will not call me back on the cine mri. The nurse did call and she told me that the doctor would have to tell me what the report said on the cine mri and no-one has called me yet. It was a week ago yesterday since he had the cine mri done and I can not get any answers. I am not sure what to ask when I get there, because in 2005 when he was first diagnosed and the doctor said to forget about it he did not expain anything and there was not any time aloted at that visit to ask any questions because the doctor felt like we should just act like it was never told to us. If anyone has any suggestions on what I need to ask him please let me know.My son is still having the nausea spells and now he complains alot about his shoulders hurting and his legs and feet. He has started telling me that his head hurts some but he says that they do not last long enough to take anything for it. I am just scared and fustrated that we do not know what to expect friday and would appreciate anyones advise. He is seeing a neurosurgeon not just a regular doctor or neurologist. Thanks for anyone's adivise me and Gabe would appreciate it, because he is asking me questions that I do not know the answers to. Remider Gabe is 10 and will be 11 in October so he will understand what is going on if someone could just answer some of our questions.

Thanks

Tonya & Gabe

[Shane99]

Yes, you might want to rethink your doctor(s).

Something else to keep in mind; The doctors work for YOU. You mentioned that there was no time alloted for you to ask questions. Demand the answers! He either works for you . . .or he doesn't. Don't let him leave the room until you are satisfied, or are ready to fire him.

If you don't have confidence in him then you don't need to deal with him.

You said Gabe's having troubles with his shoulders, legs, and feet. Is he having numbness and/or tingling or pain...or what?

Good Luck and keep us informed.

[dana_8142]

Hello,

I am glad to hear that you are finally getting some help for you son.  I know things have been rough for you, but hopefully you'll finally get some answers.  

I suggest that before your appt. you educate yourself about syringomyelia and syrinx's.  It sounds to me like one may be present, since they are not explaining the CINE MRI over the phone.  I'll give you a brief overview of a syrinx that I took from another post.

A syrinx is like a cavity or hole in your spine which can develop from the pressure of your overgrown brain tonsils pushing down on your spine. This syrinx fills up with CSF (cerebral spinal fluid) and can cause a lot of problems on its own.  Now here's the tricky part.  You can get more than one syrinx and you can get them anywhere in your spine so you should request an MRI of your whole spine.  The syrinx can be caused by chiari, injury, or even just birth.  They are not always dangerous, it just depends on where it is, how big it is, and whether or not it is growing.  Unfortunately, the damage caused by a syrinx is believed irreparable - so please don't take this lightly.

I would also ask for the names of any specialists in your area.  Even if you trust everything your neurosurgeon is saying - it's good to have a second opinion.  Afterall, if your son had bone cancer you wouldn't just see a bone specialist - you'd see a cancer specialist too.  So even though a neurosurgeon is a great person to consult with, you need to have your son seen by a chiari specialist.

Ask if the herniation has grown since it was first discovered, and how much.  Ask how much "crowding" there is, or if the fluid is flowing properly.  If there is a syrinx, ask how big and where - and then have an MRI ordered for the rest of your son's spine (you can have more than one syrinx).  Also, if there is a syrinx ask if contrast was added and if it lit up (if a syrinx lites up it could indicate a tumor) Do not ignore this possibilty, just because your son has chiari does not mean that is what caused a syrinx (although it is likely).

Make sure you write down all of your son's symptoms, go over each one with doc. like a check list.  He needs to be aware of everything.  Because what generally determines whether or not surgery is needed are the symptoms.  Your son could have 1mm herniation and need immediate surgery or he could have 10mm herniation and never need surgery.  So be sure your son is evaluated on his symptoms.

If I can think of anything else before Friday I'll let you know.  If you don't here from me - Good Luck!!!

[joni5204]

sounds like you might want to rethink your doctor.  if he is not providing you with any help i would consider finding another one that will.  and usually unless you are going to have surgeory, i would go to a neurologist (like i do for my CM). he is more likely to help with pain management than the suregeon.  i hope this helps.