New here, surgery scheduled, concerns for my small children

[samperforms]

Hi, my name is Maria and my vestibular schwannoma was discovered earlier this month (December). I have a retrosigmoid surgery scheduled for January 23 at the Cleveland Clinic with Dr. Lee. My tumor is on the left side and is 2.8 cm. I have facial numbness, hearing loss, and in the past month, a lot of dizziness. I am 35 years old and I have a 3 month-old son, a 17 month-old foster son, and a 6 year-old son. I am very concerned about how this situation and the surgery and recovery will affect each of my boys, especially since I gather that it is hard to know precisely what the challenges will be and how long it will take until I am in the middle of it.

I feel comfortable with Dr. Lee and the Cleveland Clinic, at least with the amount of research i have been able to do thus far (it's happened quite quickly--diagnosis, scheduling). I live nearby and they are in-network for my insurance, so I feel very lucky about that.

I am really hoping to be able to maintain/return to nursing my infant son after surgery. I am trying to save as much frozen milk as I can but am worried about not having enough. My doctor suggested trying to have a week's worth if possible--I am hoping that after that, I can be on pain medication that will allow me to return to nursing. My son doesn't sleep through the night, won't take a pacifier, and is very attached to me (as I am to him) and so I am worried how he will react to me suddenly being gone.

My foster son has his own struggles with some developmental delays and requires a lot of attention, and I know I won't be able to provide that for him for quite a while. It has already become a big struggle because of my dizziness and hearing problems. I am afraid that this will mean he won't be able to stay in my home--he has been with us his whole life, so if he has to leave, I think it will be traumatic both for him and all the rest of my family. We are meeting about this situation with the social worker again this coming Tuesday.

My six year-old has a lot of his own health problems (was just discharged from the hospital late evening Christmas Eve since he developed bilateral pneumonias). He also has an anxiety disorder and OCD diagnosis and is very very smart, so he picks up on everything. We've explained the surgery to him, shown him the MRIs, and tried to talk to him as much as he wants to demystify the situation (he loves science passionately). He has had 4 surgeries, so I am hoping that we can point to his successes to help him feel more comfortable, but he is also very attached to me and worries a lot.

I don't have any family in the area, but my parents and sister are planning to come out one at a time to help. We do have a supportive church community. I just don't know what to expect and am so eager to be able to get back to taking care of my children. Have people on the forum had comparable experiences? Especially any successes returning to nursing? Can I expect the dizziness to be resolved? I haven't been able to drive for a while and this is a major problem long term for all the appointments my kids have. Thanks!

[elsie]

Hi,

your story is extremely similar to mine, and although all surgeries, recoveries and after effects are vastly different, you need to know that while it was very difficult, we survived and thrived.

i was 36 and my third child was 5 days old when my tumor was diagnosed.  the first six weeks of her life were chaos as we made the preparations for my surgery and care of the children.  my husband and i both had our parents in the area and as i worked part time as a consultant, we had a child care network partially in place.  i was never able to nurse my daughter, but we bonded well, even with the chaos.  my son, the oldest at 4 and later diagnosed with adhd and asperger's, was and remains extremely close to me.  he was the most affected and confused by my surgery, but bounced back quickly to his hyper active normal.  my middle daughter is the easy, sunny, outgoing child, no change there.  I lived with my parents for the six weeks of my recovery - my 12 hour surgery and jumbo tumor (completely removed) - required no lifting and no stress, although being gone from my children and worrying about them constantly meant there wasn't a complete absence of stress.   living with three children under 4 wasn't an option, but i had to trust that they were loved and well cared for.

 i know this arrangement isn't possible in your case, but the more you can take off your shoulders now, i firmly believe, the better.  My children are grown now and we still have a very tight bond.  the biggest after effect for them was my youngest's lopsided smile that completely mimicked mine (hers is gone now, my facial right side, totally paralyzed after surgery has come back about 60%, which is good enough!).  i was starting to get a strong feeling of continued movement when i stopped walking or turned suddenly - that went completely away after the surgery.  i have ssd and extreme dry eye, and very slight balance issues but that's about it.

this is all a long way of saying, that yes, all can turn out well for your children.  do your planning up front, arrange as much help as possible and know in advance that it won't be easy, but you can get through it.  your life will be different, but you will find your new normal.  you sound as if you can handle a lot and are a giving, caring woman.  this will not change - the challenges will, but draw on your inner strength, it can take you far. 

[sandyinwisconsin]

My tumor is 1 cm and I'm currently doing radiation.  I'm 44. 
I do know about your concerns because I originally thought I would do surgery.
I changed to radiation for many reasons.

I talked to a lady in her 40s who had a large golf ball tumor removed Retrosigmoid, and she was back to work
and going to parent teacher conferences the following week.   She doesn't have headaches or any bad symptoms.
Hers was done in Chicago.

I know several people who had translab and bounsed right back to normal.
It sounds like a lot of people are having January surgeries.

I'll pray for you.

Sandy

[samperforms]

Thanks so much for the words of encouragement. It helps to hear from others who can relate.  It's difficult to anticipate what things will be like--I had never heard of this type of tumor until I had it, and I thought for months and months that I was just having unusual pregnancy symptoms. I didn't think to consider a tumor. But after the baby was born the symptoms just increased until eventually I ended up getting an MRI. Hope for the best, prepare for otherwise, I suppose. Best to all of you as well!

[kcarloy]

I had translab 3wks ago and bounced back really well. A few 15 minute quiet breaks in the day go a long way. Think positive, stay active with walking before and after surgery.