Hi! I'm new to this site. I was recently diagnosed with Chiari Malformation type 1. I have a 7mm descent. I'm working with my neurosurgeon (Dr. William Butler of MGH, Boston MA) to discuss surgery dates. I'm nervous and have tons of questions so this was definitely the right place for me. My symptoms are dizziness, difficulty swallowing, fatigue, headaches, nausea, etc. I don't feel an intense pressure in the back of my head when I cough which is apparently one of the top symptoms of chiari. Any information concerning surgery would be most appreciated. I'm curious what symptoms commonly go away after, and how long the recovery time is. Thank you!
Abby pretty much covered all the questions to ask. The bad thing is there are very different results for the surgery. Some people have a great recovery and most of their symptoms go away. Others have a difficult and lengthy recovery with very few symptoms resolving. I had the symptoms you listed along with loss of motor skills and balance, memory loss, the crazy sharp straining pains in my head, and a few others. My neurosurgeon specialized in minimally invasive surgery so my recovery was quick (5 weeks) and several symptoms have gone like the crazy sharp pains, migraines, and dizziness has gone away. I may never recover the 'skills' like balance, swallowing, memory, and fine motor skills. So what I'm trying to say is your recovery and resolution of symptoms will be uniquely your own and probably unlike some of the ones here, though may have similarities. Wish you all the best!! XOXO
My NS said headaches are usually the first symptoms to go away and probably the primary issue correct by surgery. Other symptoms take more time with symptoms like tingling/numbness relating to nerve damage being the slowest to heal with the warning that those type of issues might not fully go away. The longer you've been symptomatic the more likely it is that you'll have lingering issues but most patients do see a good bit of improvement!
Thank you! I will try to ask as meaning of these questions to ensure I understand what I'm doing! :)
Abby said:
Hi Brittecook,
Getting your questions together to discuss with your NS is then ext thing you can do to get ready. Make sure you understand completely what treatments you will be getting. Take someone with you, for an extra set of ears to hear what your doctor says.
Here are some questions for you to add to: Good luck and keep us posted.
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?
I am curious about the minimally invasive surgery. Is it that the bone is shaved down from the outside so the dura is not actually being opened? Does the back of your head look more narrow now? I'm sorry if these are odd questions. This is all so new to me, but minimally invasive appeals to me more, and I was wondering how I could go about finding if I'm a good candidate for it. My neurosurgeon told me that the minimally invasive surgery has less potential for really helping the problem, but it sounds like you have a different opinion with that.
BestFriendsGoFishing said:
Abby pretty much covered all the questions to ask. The bad thing is there are very different results for the surgery. Some people have a great recovery and most of their symptoms go away. Others have a difficult and lengthy recovery with very few symptoms resolving. I had the symptoms you listed along with loss of motor skills and balance, memory loss, the crazy sharp straining pains in my head, and a few others. My neurosurgeon specialized in minimally invasive surgery so my recovery was quick (5 weeks) and several symptoms have gone like the crazy sharp pains, migraines, and dizziness has gone away. I may never recover the 'skills' like balance, swallowing, memory, and fine motor skills. So what I'm trying to say is your recovery and resolution of symptoms will be uniquely your own and probably unlike some of the ones here, though may have similarities. Wish you all the best!! XOXO
What does your headache feel like? I for one have 3 types of headaches. And tend to have combos of 2 or more. The headache i refer to as the classic chiari, i describe as having a metal balloon slowly inflate inside the middle of your head until your head is super heavy and feels like it will explode and fels like my brain will squish out of my ears. I underwent the severing of the C3 nerves and had the chiari decompression surgery in may. The surgery helped with this particular headache. i was only in the hospital 2 days. The doctor said it was a 25-30% chance it would help. I hurt so bad i was willing to try anything. But my new neurologist says that things will gradually get better over the next few years.
P.S. i did not have the minimally invasive surgery.