Author Topic: Recommendations- surgery scheduled in January  (Read 352 times)

rebeccadill32

  • New Member
  • *
  • Posts: 12
Recommendations- surgery scheduled in January
« on: November 29, 2017, 12:43:15 pm »
Hi there, I will be undergoing surgery on January 9, 2018 and like so many others I am filled with a million questions. My surgeon is Dr. Tamargo from Johns Hopkins. He said most of his patients are off work for 6 weeks. In your experience, does that sound right? Should I be giving myself more time? I know everyone is different but just curious.

I have a 6 year old son who overheard someone ask me about my surgery. I was trying to wait until a little closer to explain all of this to him but I answered all of his questions honestly. He is much more mature than I give him credit for. He handled it well. He is not at all happy about it but he understands it needs to be done. Is there any advice anyone with kids can give me on how to prepare him. He is insistent on wanting to see me in the hospital but I’m not a fan of that at all. Plus, he probably won’t be allowed. In the end, I doubt we will allow him to come. I don’t want to scare him. But has anyone had that happen, where their child made out better seeing them in the hospital?

As for my hospital stay and after, I have lots of comfortable clothes and shirts that button so they don’t have to go over my head. Any other suggestions?

I know this is so minor in the grand scheme of things but I have long hair that I love and  my hair dresser suggested that we do a cut that is shaved underneath so maybe they won’t butcher it the day of surgery quite as much. Has anyone ever done this? Would you recommend it? I was very ill a few years ago and my hair became very thin and it took so long to get it back to what I have now. I know it is vain but I just want to hold onto what hair I can.

I know I will be losing the hearing on my AN side. Is there any soggestions on things I can do with a child to make all of this easier on all of us? My hearing is still decent right now so this is going to be a tough change for all of us.
 
Sorry for the lengthy post. I really do appreciate any guidance you can give though.
Diagnosed 9/20/16 with 1.8 x 2.5 AN
Mild hearing loss, tinnitus, dizziness, facial pain
Follow-up MRI 3/14/17 w/ no growth; 10/9/17 pressing on trigeminal nerve causing pain
Treating w/ Dr. Tamargo @ Hopkins
Surgery scheduled with Tamargo/Chien January 9, 2018

kgs123

  • New Member
  • *
  • Posts: 33
Re: Recommendations- surgery scheduled in January
« Reply #1 on: December 02, 2017, 06:53:03 pm »
I have a 3 year old that I made a social story book for about my surgery. Turns out my story didn't go exactly as written but it at least opened the door to his understanding a bit and that people would be coming to help us.

As far as what to have/bring - bring lip gloss to the hospital. Button up/zippered clothes and yoga pants are working for me. The yoga pants are pretty helpful for the belly incision. I'm not comfortable in jeans yet.

Good luck to you!
Karen

Zan

  • New Member
  • *
  • Posts: 41
Re: Recommendations- surgery scheduled in January
« Reply #2 on: December 03, 2017, 08:35:47 pm »
I was out of work for 5 weeks, but could have gone back after 4. I did not, however,  have issues with dizziness. I've heard that the dizziness is what keeps people out of work.
I chose to cut my hair, but I don't think you have to. They only shaved right along the incision line, not the whole side of my head.
I also brought button up pajamas to the hospital,  but because of the IVs I could not get them on. By the time I got home, I no longer had a bandage on my head , so I did not need them.

Matthew

  • New Member
  • *
  • Posts: 10
Re: Recommendations- surgery scheduled in January
« Reply #3 on: December 04, 2017, 02:51:30 pm »
I'm at 6 weeks right now (post retrosigmoid) and I feel good enough to get back to work, but because my job has a heavy physical component (I'm a nurse) my medical team wants me to wait a bit longer. As for having your son visit you in the hospital, if you decide it is okay for him to visit you make sure you let your nurse(s) know when the visit will happen- they can plan their cares to help maximize your time with him. They are also great at staging the room and helping you get ready so things don't seem so scary to a youngster. Also, you made a great choice of care provider, their team approach and access to special resources is world class.
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

rebeccadill32

  • New Member
  • *
  • Posts: 12
Re: Recommendations- surgery scheduled in January
« Reply #4 on: December 05, 2017, 07:21:13 pm »
Thank you all so much!! I truly appreciate the advice. It’s so much to take in and so overwhelming.
Diagnosed 9/20/16 with 1.8 x 2.5 AN
Mild hearing loss, tinnitus, dizziness, facial pain
Follow-up MRI 3/14/17 w/ no growth; 10/9/17 pressing on trigeminal nerve causing pain
Treating w/ Dr. Tamargo @ Hopkins
Surgery scheduled with Tamargo/Chien January 9, 2018

SusanMC

  • New Member
  • *
  • Posts: 3
Re: Recommendations- surgery scheduled in January
« Reply #5 on: January 09, 2018, 11:18:25 pm »
Hi rebeccadill32, I hope your surgery went well! I am six weeks out from surgery and I, too, am left without hearing on my AN side. As far as returning to work, balance and fatigue are the biggest issues. I plan to go back to work at the end of next week, and begin working part-time for a week before jumping back in full-time. I could accelerate this, and I may, but I just want to ease back into things. I was taking at least 1 nap a day until about a week ago. Week by week, you'll notice big changes. Even though you may feel like a truck hit you when you read this, just know that a few weeks from now you'll be feeling like a functioning human again! It'll be a learning experience for your child, for sure. I think it's healthy to be transparent, and for him/her to see you in the hospital. I hope you have people taking care of you to make it easier! All the best.

 


anything