Post surgery update

[mom2cbnt]

Well Robert had his translab surgery at U of M here in Ann Arbor on Wednesday 5/26.  It was a 10.5  hour surgery. His Left side AN was a bit larger than they expected.  It was measuring at 2.0 cm in March by MRI and it was right around 3.0 cm at the time of the surgery.  So it was definately growing faster than normal.   Dr. El Kashlan and Dr. Thompson were excellent!!  They were able to get it all thankfully.  he is recoverying nicely.   He had some nausea and headaches shortly after surgery but he hasnt even really used the pain meds they have offered.   Up and about  no real balance issues.  He has been walking the halls and doing pretty good.

We were told yesterday that we might be going home this morning, however it looks like Robert may have developed a CSF leak.  They are waiting to confer with both the ENT and Neuro team to decide if they want to keep him here another day.  They just took out his abdominal drain, and will soon remove his head bandage.   So I guess today is a waiting game..

[Denise S]

Hi Alexis!  I have been wondering about my fellow Michganders.   I noticed you hadn't posted much at all and wasn't positive what you guys decided to do.     So glad to hear he had the surgery and ALL the tumor was taken out.  That is great news.       Now as for CSF leak...I am not as familiar with, but have to say glad he is still in the hospital and they will do what is needed.

Wishing you guys the best.   Be sure Robert gets plenty of rest, but is walking or doing whatever exercises he is told when he can.

Sure has been some beautiful weather here in Michigan.   Will be great recovery weather...even to just sit outside & enjoy our beautiful mother nature sounds & scenes  

You may notice that Sue & Carol Ann both from MI had Translab surgery too.  Sue a week ago Thursday & Carol Ann this past Thursday.    I know another lady from the U.P. of Michigan having her surgery in a couple weeks too....Translab.     MI doctors are staying busy.

Sent you a PM too, if you ever need to chat, feel free to call me.  

Robert & your family will be in my prayers for a speedy, healthy recovery.    Thanks again for posting update!
Denise (Ludington,MI)

[Tracy Lynn]

Glad to hear everything is going so well. Sounds like they got his out in good time considering its growth rate.

I think its great when you don't need to take the pain meds, but its handy to have them nearby just in case. The nurses kept telling me to stay on top of the pain, and I think there was only one time that I regret not listening to them. He may feel more human after moving down to Ibuprofen or something OTC.

Happy to hear that he is up and moving, thats half the battle.

I do hope that you are still doing well Robert, prayers your way for certain.

[Kaybee]

Hello, best wishes for the recovery of CSF leak.  As Denise S said, you're in the right place!  Walking the halls is excellent news--something that I was not able to do in the hospital. 

[jennifer7]

Hi Alexis
Dr El Kashlan and Dr Thompson removed my AN in Feb, I have only nice things to say about them too!  My surgery lasted about 10 hours but they also removed all of the tumor and preserved my hearing. 
I hope the CSF leak turns out not to be one and the rest of recovery continues being easy.
Jennifer

[mom2cbnt]

It is definately a CSF leak.  They will be by later today to put in a lumbar drain??  I think that is what they said.  He is being restricted to lest up and around, and once the lumbar thing is in it will be bedrest for a while.   Definately not going home today and possibly not tomorrow.  They want to watch this and make sure everything is ok.  That is fine with us rather be here and have it taken care of them home and then freak the kids out with our trying to rush back 45 min to the hospital.

[jennifer7]

Sorry about the leak, my roommate when I was at U of M had one and they gave her a lumbar drain.  She was flat on her back until after I left the hospital 3 days later.  She had back surgery not brain so hopefully your husband will be up even quicker.

[Jim Scott]

Hi, Alexis ~

Thanks for keeping us updated on Robert's post-op progress.  Those CSF leaks are a fairly common post-op complication but the lumbar drain should handle it.  It's likely that Robert won't be leaving the hospital in the next few days - but that will be determined by his doctors.  Frankly, it's better this CSF leak occurred while he was still a hospital patient rather than later, when he's home and then has to be re-admitted.  I hope the drain will be out soon and Robert can resume what seemed like a rapid recovery.  Your advocacy for and presence with him is definitely an asset to your husband.  Well done, Alexis. 

Jim

[Denise S]

Gee, I have to say I once again think Jim took the words right out of my 'brain'     So basically I will say Ditto to what he said!!

How are the kids doing overall with dad having surgery?   Glad to hear that family made it in to help you guys out!   

[mom2cbnt]

Good news and Bad news... 

Good news we have a private room at last!!!!   

Bad News,  we are definately not leaving in a day or two.  They will put the lumbar drain in this afternoon then flat on his back slightly elevated for the next 3 days.  So maybe home by wednesday.   

I agree better now than once we got home.  I am sure that would totally freak out the kids.

Kids are so far ok about the surgery they just want Daddy well.  Thomas my 7 year old was ok with us not being there today for his birthday.  He has Grandma / grandpa, and other grandma there plus brother and sister and 4 dogs.    We havent yet told them about not being home for another few days.  We will see how that turns out.  I will keep you updated.

He is a little disappointed in that he has been feeling great.. pain is actually very manageable maybe a 3-4 at the worst.  He has been up walking the halls unassisted, no real balance problems, no facial nerve problems,  some minor nausea but that might have been a result of the anesthesia.  He does have the obvious SSD, but that was  expected.  His preop work showed that his left vestibular nerve was 97% non functioning so that explains the balance.  He feels a little bummed kind of a 1 step forward but 2 back..  Discouragement is setting in, and I am trying to think of ways to cheer him up. 

He doesnt want the kids to see him like this.  I am sure that is normal, but I am also sure the kids want to see both of us.  Not sure what we are going to do about visitors..    His mother is supposed to fly back out to CA on Wednesday so she will be having a hard time with this change.   Not sure what can be done there though, she has to get back she has already been here a week.   She has a cold too so really doesnt feel comfortable coming to visit, she doesnt want to get us sick. 

I may have to go find a Walmart to buy some new clothes..  I am running out of stuff to wear,  I really dont want to drive all the way home and back just for clothes.  I might as well spend the $$ i would spend on gas on a few new things,  sweats and t shirts mostly.  I will update more later after we talk to the family.  We are now just waiting for the lumbar drain to be put in.

[kiwi]

I'm sorry about the CSF leak, from experience they are not fun.   On the positive side though at least it is now and not later, as another surgery is not pleasant. Thoughts are with you.

Jacqui

[mom2cbnt]

Quick Vent Sorry --

Lumbar drain ordered at 2pm on Saturday... ok its now 8 am on Sunday and still dont have the drain put in... is this a conspiracy on the billing department's behalf so that we have to stay here extra time. The lumbar drain needs to be draining for 48 hours and then clamped off and left to sit for 24 to see if he is still leaking... we just wasted 18 hours!!!

[Cheryl R]

Is it maybe the weekend and the right dr isn't around to put one in?           Just a guess from a retired nurse?        That is terrible though and you need to be told why and when.          I hope this happens soon and all goes well.
                                                                     Cheryl R

[sues1953]

Hi Alexis,Thank you for posting Roberts progress.  I am sorry that he (and your family) are having to go through all of this.  I had surgery on May 20th and the recovery does seem to have its own way.  Please know that he is in my prayers. 

Sue in Michigan

[Denise S]

Alexis, that is just crazy!!   BUT, I'm thinking maybe Cheryl might be right...plus a holiday weekend.    Your conspiracy thought is kind of funny, but more than likely the billing department is gone for the weekend too...?     Is he having headaches?    I was just reading some of my AN booklets last night and seen the CSF topic and thought of you guys.   It said sometimes they can have severe headaches until it is treated.   Hopefully he isn't!!    Be strong & be his advocate by insisting to find out what the heck is going on & what is taking so long (of course always easier said than done)     

You mentioned either here or in message about clothes shopping.   You could go get some new capri's or something like lightweight lounging clothes and consider it just some new summer clothes      Great too they are letting you stay in there with him.   My husband was able to do that & since we lived 3 1/2 hrs. away from Novi, it saved lots of money on hotel fees.

Hopefully Roberts spirits are up.   As for the kids visiting, that can be tricky since everyones kids are different at how they take things.   I had emergency hysterectomy when my boys were 7 & 9 and had a couple complications after.  We debated on letting them come to hospital, but we figured they should and it is all part of lifes journeys, etc.    Seems like a lot of times kids think hospitals are scary & we didn't want them to think that way.   We used it more as the tool of how much they help people, etc.   (make sense?)   Good luck with everything!   Will his mother at least be able to come see him if he don't get home before she leaves?

Well, continuing to think of you guys!!   A cyber hug for you both & keeping you in my prayers!
Denise