Answers are in italics from the surgeon I chose.
1. How many of this type of surgery have you done? Lots of craniotomies done every week. Strictly a brain surgeon now. Mostly tumors but two CSF pts right now.
2. Is there more than one way to treat this? (Endoscopic intranasal?) Not for a leak in this position.
3. Will I be asleep or awake for the surgery? General anesth…asleep.
4. How long will the surgery take? 2-4 hours (Mine took 2 1/2 hours.)
5. What is the most common complication? Failure to repair leak, seizures after surgery
6. What is the total anticipated Length Of Stay in hospital? Up to a week.
7. Will I go to ICU after the surgery? How long? YES, At least one night.
8. What is my total recovery time? When can I return to work? 2 weeks minimum (it took me about 3 to go back to work.)
9. What, if any are the long term issues? Consider this a speed bump. You should get back to doing everything you do now. (I can.)
10. Will I need to take an anticonvulsant? YES Keppra For how long? 4-6 weeks.
11. Will I be able to drive? No driving for one month at least.
12. Will you have to shave much of my hair off? Horseshoe incision over right ear, will leave as much hair on top as possible to cover it
13. What is the chance of any recurrence of the problem? Am I at any higher risk for future problems? Minimal. After 2-4 weeks, home free.
14. Will my ear symptoms improve? They should once the fluid drains out or dries up.
15. Will I have permanent hearing loss? Should not. Most seems to be from the fluid. Less risk of hearing loss with neurosurgeon approach vs. Otologist.
16. Will you operate with an Otologist/ENT? NO If not, how do you fix the ear problems? Should resolve them.
17. Should I stop any of my meds or vitamins/supplements? Stop vits and supplements only for one week prior.
18. When can I return to sports and exercise? Low impact after 4 weeks
19. Will you put a tube in the ear after the surgery? Probably yes, Will have Otologist put tube in 8-10 days before surgery to drain and test for CSF. Leave same tube in after surgery. Tube will improve hearing faster.
20. Will you put a lumbar drain in? YES Intracranial drain/pressure monitor? NO Catheter? YES
21. What is the Benign appearing cyst or polyp in the left alveolar recess? Infection? Ask the Otologist
22. What about the fracture of the floor of the middle crania fossa? Will repair in surgery.
23. Physical Therapy anticipated? Maybe, will set up while in hospital. Chewing may be painful/difficult after the surgery. (I DID NOT REQUIRE PT.)
NOTES: I typed up the questions in advance and had my husband go with me to take notes to that I could listen. These are some things he wrote down:
- Sleeplessness, alcohol and dehydration will give me a higher risk of seizures. A little alcohol ok but no drunkenness. :)
- Tylenol ok for any pain pre-surgery.
- Piedmont has all of the surgical navigational instruments. CT before procedure to mark where they will cut. ASK YOUR SURGEON ABOUT THIS...critical for brain surgery!!!
- He will use split thickness skull graft or titanium mesh to repair skull fracture.
- Will have to lay FLAT in bed for 2-3 days after surgery. Cannot get up.
- Can go home the day after they take out the lumbar drain
Thanks for sharing such useful information.The information provided here is very nice.Therefore I thank the writer for share this useful input.I Love To Read Your Blog and it was Really Helpful for me and it gives good details.
ReplyDeleteCerebrospinal insufficiency
Thanks Megan...glad you liked it!
ReplyDeleteHi, my name is Nicole and I read about you on mail online. I have csf leakage I am a mother of 3 and have a wonderful husband. I am suffering and the pain is unbearable!!! I have had two blood patches in the last month. The pain has returned and returned with a bit of a more powerful punch. I am a runner I use to be a able to run 30 miles a week, I am a pt and teach group fitness but now I am on my back full of caffeine and Advil! I am sooooo very tired. Monday we meet with my neurologist. The next step is surgery. Im starting to hit a low because of the pain, I am reaching out to you because I want to know are you feeling better is there hope at the end of the tunnel. My faith in GOD is strong I have faced many storms but this one is dark. All I want is to the wife and mom I was before all this has happen. I do need much but my heart desire is to take care of my family. Can you offer any insight! If not I understand,
ReplyDeleteBe blessed
Hi, I am completely healed and sealed and out living and enjoying a full life. There is HOPE!! I was a head leaker, so can't advise on the spinal leaks, but we have a wonderful Facebook group you should join where there are LOTS of spinal leakers to guide you!
ReplyDeleteNicole, here's the link to the Facebook group.
ReplyDeletehttps://www.facebook.com/groups/31002608753/
Hi Tracy! My name is Linnea and i was recently diagnosed with a spontaneous CSF leak through my ear due to a defect in the middle cranial fossa. I want to thank you for writing this blog, it's really hard to find information about csf leaks on the internet (probably because it's so rare) and i've really learned a lot from you! I had no idea it's such a big surgery i'm probably facing, i was kinda imagining an endoscopic ear surgery.. So thank you, now i'll be much more prepared when my doctor gives me the news, haha. How are you nowadays?
ReplyDeleteIs it safe to take steam if patient get cough after surgery?
ReplyDeleteSorry, don't know the answer. Call your doctor or nurse to be sure.
DeleteThank you Tracy for sharing this information. I found out yesterday I have a CSF leak and will be having surgery next month. This list of questions will be incredibly helpful for my pre-surgery follow-up appointment. Also thank you for the pictures. In that last one, I would never know you had a brain surgery; I hope my surgeon is that kind. Glad to hear you're doing well. Thanks again for sharing!
ReplyDeleteCathy, you might want to join our Private CSL Leak Support group on Facebook!
Delete