Have 2nd appt tomorrow with NS to review cine and full spine mri. I assume he will give me recommendations re surgery/treatment. I’m so nervous and am completely blanking. What questions should I be sure to ask?
Printing this list now. Thank you abby!!
Good luck tomorrow! If he recommends surgery ask what his rate of incidence of CSF leaks are and infection. How many of his patients need revision surgery? What’s the average pain level long term post op? Have you been screened for CCI? Tethered cird? Dysautonomia?
Jenn
This is really helpful... Thank you!
Wouldn't it be nice if we could hand the doctors a packet to fill out just like the ones they give us!
Thanks everyone! I’m nervous, but hopeful that getting information and answers will be another step forward in this journey.
Kola that is hilarious! LOL
Wow! Great questions. I'm saving these!
Abby said:
Here are some questions, but please incorporate with your own.
Good Luck and let us know what you find out.
Questions to Ask Neurologist/Neurosurgeon
General
1. What is the mm of the herniation?
2. What are the options of the MRIs?
3. What causes Chiari?
4. Will you check for Ehlers Danlos, Dysautonomia, or other related conditions?
5. Are there any other tests that need to be done?
6. What exactly is causing symptoms? (explain or have a list of your symptoms)
7. Should there be any restrictions of current , horseback ridding, bike ridding?
8. Recommended Books, brochures or websites, support groups?
9. Genetics - % that other children, family members may have chiari, should MRI be ordered for them?
10. Do I need to see a neurologist?
11. Is Surgery necessary, how soon?
If Surgery is not recommended questions:
1. What is the treatment Plan that my options available?
2. Pain Management?
3. How often to be monitored?
If Surgery is Recommended Questions:
What are the risks and complications if I choose not to have surgery performed?
What are the positives to come from Surgery?
Success rate with surgery?
What kind of surgery do you do? Endoscopy, Bone decompression, PFD w/duraplasty - what kind of patch?
How many surgeries do you preform per year?
How is the surgery performed?
Do you shave off the tonsils?
What are the risks and complications of surgery?
Has any of your patients died or had complications?
How long does surgery usually take?
What time does surgery usually start"
How many surgeons are in the OR?
Do the surgeons take breaks...or is the surgery continuous?
Will my hair be shaved off or just in the area of surgery?
Will someone give my family current updates?
How big is the incision?
How is the incision closed? i.e. stitches, glue, staples
How long does it take the incision to heal?
Is there any blood loss?
Should we donate Blood?
Is there any plates, screws, etc. used?
How can we and should we prepare for surgery?
Is there counselors or social workers that we can speak to?
After having this surgery, could there be further surgeries?
If we travel are there any recommended places we should stay?
How do we get in contact with them?
How many days do we need to be there before surgery day?
Does anything go on before the surgery day?
What are the charges for surgery? Hospital? Doctors? etc.
Personal insurance questions insert here!!!
Questions about Syrinx:
Is there any, where how many, and how big?
If yes, will they go away or shrink after surgery?
Can they be drained?
After having surgery can more appear later?
Questions about Tether Cord:
Do I have a tether Cord?
If no, could I still have it....and just not be able to see it on the MRI?
If yes, do I still need surgery to repair that?
Is this a separate surgery?
How long is that surgery?
Can it be cone while the other surgery is done for the Chiari?
After Surgery Questions
Will I need special PJs for and after surgery? Suggested items I need to bring from home after the surgery?
Will I be in ICU after surgery? How long?
How soon after surgery can my family see me?
How long will I be in the hospital?
How often can my family visit me while I am in the hospital?
How long do we need to stay in the area after being released from the hospital? (If traveling)
Will there be any delays after surgery?i.e. physical, cognitive
Will I have to wear a brace, supports? How long?
Recovery time...general?
Will I need Physical Therapy?
When can I resume work or school?
Any restrictions after surgery? ie, roller coaster, sports, etc.
What will I be given for pain?
Can my husband/parents/wife stay overnight with me?
Can I get something to eat after surgery?
Any test performed after surgery?
Visitors after surgery? like friends
Will I have my own room or shared room?
What is the likely hood of me coming down with meningitis after surgery? Hydrocephalus?
What signs and symptoms do I need to watch for after surgery?
Preferred method of transportation back home?
Will I have rechecks with the neurosurgeon? How often do I need to come back for check ups?
Recheck MRI's - how often, how many, and for how long?
When sent home, can a full report and suggested aftercare/treatment plan be given to my GP?
Do we still need to see a neurologist after surgery?
How do we contact (doctor) neurosurgeon after we get home with any other questions?