Post-op Newbie says HI!

[ombrerose4]

Hi, my name is Lauren. I am 1 week postop of resection of a large a.n. that was pressing against my brainstem. My only symptoms was a burnign numbness on the left side of my tongue. Thank goodness for a wonderful ENT who after seeing me a few times, decided to get mri of neck. He was almost as surprised as I was and extremely supportive in every way. Two days later I met with his neuro otologist colleague and we discussed options. For me (age 50) the only option due to brainstem compression was surgery, performed by a wonderful team at Mt. Sinai in NY, neurosurgeon and neuro otologist worked as a team and completely removed tumor. No facial paralysis, although at this time i do have a complete hearing loss on my left side. Won't know for about a month how much permanet damage will remain. My ENT used a bone conduction device on me the other day, and with it I was able to "hear" normally on that side. I will probably have one implanted at some point after all swelling, etc has gone away. Mt only other post op problems are the headches/facial pain on the left side of face and the loss of lubrication of left eye. Both neuro drs. and my eye specialist feel this will resolve in a few weeks. I am looking for any sleep suggestions- that's when the facial pain gets really bad. I am sleeping on an incline as suggested by my drs. but the pain keeps me from sleeping for long periods and is distressing. Any help would be appreciated. Thank you for letting me share my experience.

[lori67]

Hi Lauren and welcome!

Glad to hear you are doing well - especially after only one week!  I'm sure you'll be feeling even better soon!

Do you take any pain meds before you go to bed?  If not, you might want to ask your doctor about some.  Or you can try something like Tylenol PM.  That's what I used and it knocked me out pretty well.

Lori

[nteeman]

I had my surgery at Mt. Sinai in NYC and it was a success. The hospital is top notch.  So who were your surgeons? Mine are listed on my sig.

Cheers,
Neal

[tenai98]

Hi Lauren and welcome to our family....
You have found a great place to ask questions and this forum is a wonderful support group.
JO

[Kathy M]

Hi Lauren!  

Sounds like you were well-cared for.  I'm glad you checked in - after 1 week, sounds like things are going good.  Sleep was a tough one for me and ended up spending a fortune on pillows!!!!  I'm not sure I really slept well for a long long time and it was very frustrating.  I talked to my neurosurgeon and he prescribed a sleeping pill for me which I took every now and then.  That helped - also the pain killer right before bed as I needed it also helped, but I didn't want to get used to that form of relaxation...I was careful to use that only if I needed to!  (But you being only 1 week out, you've go no worries there - take the meds your doctor prescribes just as they are prescribed!!)

I asked the same thing of this forum, and from what I got back, everyone was so different, used lots of different types of pillows, and configurations, and helped me realize that I wasn't alone in the sleep struggle and to embrace trial and error!!!  Eventually, you'll find sleep your friend again and just the right mix of position, pillows, and relaxation techniques  (ppr) - forgive me...I work in state government and love acronyms!!!!

Take care (I'm almost your age - turn 49 this month) and my AN was large also!!  The brainstem compression discussion with neurosurgeon really got my attention during the first consultation and hastened my path, that's for sure.

Rest rest rest and be patient with yourself!!!

Kathy

[ombrerose4]

Thank you for welcoming me so warmly.!. It's nice to know you are out there. My surgery at Mt. Sinai was performed by Dr. Bederson and Dr. Choe.  Going to try a down pillow tonight and see if it offers any relief. Thanks.

[alicia]

Hi there Lauren.  I am glad that you have posted your concern!  I also had a hard time a night.  Those minutes seemed to pass by so slowly, I thought I was going crazy.   I am wondering if you are on pain meds at this point as well.  Maybe sleep meds would help.  Call your doctor.   Are you still on steroids?  I believe they can make for restless sleep.  Try these little suggestions people offer, but realize that everyday should get better and in a few weeks you should be sleeping almost all night.  I think by the end of week 3, I was sleeping most of the night.  My thoughts are with you for the pain to subside and restfull nights.  Alicia

[sgerrard]

Hi Lauren,

Welcome to the forum, I'm glad you found us. Please make yourself at home.

Steve

[another NY postie]

Hi, Lauren
I too just had surgery - day 11:) and finally arrived home to NY from LA last evening.  Sleep has not been my friend.  I just took my last steriod last evening, so I am hoping to get some relief.  I end up on the couch around 1:30 am because I like my head elevated with pillows under my knees...like in the hospital bed, and then I just kind of drift in and out of it until morning.  Plus I have these awful night sweats that once again, am hoping are steroid related.

Dr. Stefan gave me ambien which I tried one night but it was horrible for me.  I had these violent, angry and vivid dreams.  I take Ativan at night (it is a relaxer) which I had been taking pre surgery as I am a terrible sleeper and have trouble falling asleep.  I think that helps me.

If I figure anything out I will let you know!   We don't own a recliner, but I am seriously thinking I would like one now because it seems like that would put me in the right position!

Cheryl

[leapyrtwins]

Hi, Lauren -

welcome to the Forum.  I just answered the PM you sent me, but wanted to say hi and welcome 

Jan

[moe]

Hi Lauren,
Good advice from everyone.
Welcome too!
Everyone's story is so different. I had the headache from you know where and was on vicodin, changing to percocet, and finally weaning to Tylenol/Motrin. Took a good 6 weeks. But all is well now. No headaches (other stuff instead).
So I was more aware of the headaches than the sore head.

You are doing awesome for one week plus post AN surgery.

Down pillow sounds good. Maybe place it on top of some regular pillows to allow elevation.
And the pain pill at night (or 2 ) will help you sleep. I did not get addicted to the pain meds, as feared. I just got really constipated
I also had vivid nightmares with ambien-woo it was a scary night that I took that pill  (in the hospital).
"Here's your sleeping pill." they said. I was so relieved to receive something to help me sleep, I didn't even ask what it was! Until the next day.

You will notice improvements slowly over days. So a week from now, think about how you feel and you'll see you ARE improving.

We call it baby steps. Slow and steady. Rest, eat, drink, walk, repeat cycle!  Sleep is a great healer.

Have a great Sunday, nice and easy. I enjoyed music on tapes post op. The Zen type.....meditation......cool waters......etc,
Maureen

[epc1970]

Hi Lauren
I found that it took me a good three or four weeks to get the sleeping thing down. The first week to 10 days of steriods there was no consistant good sleep.  I was oddly procutive in the wee hours of the morning-lots of time to write some thank you notes and catching up on bill paying and movies! After that, I learned take pain medication before bed and I went through many pillows to figure out something that worked for me: I needed something soft becauese my face was sensitive but I needed support for my neck. I have ended up with a combonation of a down pillow over a tempurpeadic pillow -that way I have soft and support. I still sleep that way now. It does get better and you will figure out something that works for you.
Erin

[Jim Scott]

Hello and welcome, Lauren ~

You may have to 'train' yourself to sleep on your 'good' side until the facial pain subsides, as you continue to heal.  Medications are also a sensible alternative, although they have to be handled carefully to avoid over-dependence.  As others have noted, you seem to have had a good surgical outcome and time will likely alleviate much of your current discomfort. 

Please feel free to post a question or comment whenever you feel the urge.  We'll be here.

Jim

[Nickittynic]

Hello Lauren! I'm also new and had my surgery just two days before yours! How are you doing now? Sleeping any better?

[cyrmom2]

Hi Lauren.
Welcome! I am now 8 weeks post op and I sleep very well most nights and my energy level is good during the day.  However, if I don't get 8 hours of sleep I feel awful (headaches & more facial swelling/pain) and I have to make time for a nap.

Hope your sleep improves,
Cyndi