Here lately it seems with every day that passes I lose more of my personality. I wake up and remember the person I used to be and it seems I’m so far from that. Always cheerful happy and it seems like those things are gone. Patient kind understanding. One of the things I don’t like about Chiari how it has slowly took the personality that I loved about myself. I find it hard to deal with myself because I don’t seem like the person I used to be. Was wondering if anyone out there felt the same way and then after surgery felt better not just from pain but with themselves. Some days just feel hopeless of being the person I used to be I can remember how that person acted so I still at act the same way to those around me because I remember how to do it but it just doesn’t come natural anymore. Would love any feedback you can provide. God bless you all in your journeys.
Thank you so much Abby I’m so sorry I have worded it wrong. I have not had surgery yet have been praying about it and was wondering does surgery make a difference thank you for replying and sorry that I didn’t word it wrong
Meant to say I did word it wrong
I am going to a neurosurgeon in Winston-Salem this Thursday so thank you for your reply for some questions that I can ask him. I am currently on no medications. Thank you again for all of your help I greatly appreciate it have a very blessed day
Thank you so much for that list some days I have questions and then the next days I forget what those questions are so thank you so much
Thanks for this list because I'm going to see my neurosurgeon regarding surgery next Monday.
Abby said:
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 question
Lawrence, wow those girls wrote some beautiful words. I just want to reiterate that yes, your personality is inborn and still there. You are going through a true crisis so please give yourself some slack and time and patients. We can be so hard on ourselves, you need to be able to move through the hard parts of this journey without the tough judgement we subject ourselves to. You may missing some of your zest right now, and that is normal, I can relate and think we probably all can. Hang in there Lawrence- it does get better.
Jenn