AN Newbie

[Rob7]

Hello all....been a LONG DAY...
he is very un easy, figity, cant rest, wont stay still long enough for the MRI to take place today they tried twice.  they are thinking of intebating him in order to do the MRI.  they think that there was a vein next to the tumor that was clogged and backed up to the brain.  causing high blood pressure then causing swelling on the brain.  this vein is one that leads out of the brain not into the brain.  they have started to give him asprin to thin the blood and if that does not keep the draining from draining so much then they will put a shunt in.  they think there is not anyother reasons to what the deal is.  the blood pressure is still high or all over the map as the doc said.  he is not too coherent ... he talks to me but not much and only short spurts..he can follow any orders they give.  one thing that i am worried about is that his right leg shakes like he is having a seizure...a fokal seizure but they said they have given him seizure meds to prevent any from happening but it is shaking alot...looks bad. every day leads to more up things but time will tell as of now..  I am sorry i am not making sense i have had three hours of sleep and my mother is not making it in until tomorrow now and my BIL 's flight isnt going to make it in until 5 tomorrow night instead of 2. 
sheree

[jerseygirl]

Sheree,

Don and you are in my thoughts and I hope he will turn the corner soon and will start the recovery! Thanks for keeping us posted.

                   Eve

[nancyann]

Sheree:

You & Don are in my thoughts & prayers. 

Keep a peaceful heart during this difficult time,   Nancy

[Obita]

Hi Sheree:

How is our friend Don doing?

Kathy

[Rob7]

I hope you all keeping Don in your thoughts and prayers even though I dont see many posts...he is really having a rough road.  He has had double vision for about 24 hours now.. the drainage out of his head (spinal fluid) is steady..anxious to hear about a solution to that today when the doc comes today.  blood pressure is a steady hypertension and did indeed shoot up to over 200 again last night when we came in to visit him.  His ENT doc shared with him an hour after we visited but 2 and a half before we could go back in, everything that happened during surgery.  he was very upset and confused, scared, hurt that nobody told him the real deal.  I honestly think he was not ready to hear the whole news...and he has not really been coherent enough up until today anyways.  I am really sad that the doc did this..I had to calm him down after our 30 min last visit of the day and leave him to lay there thinking and mulling everything over in his head. I can only pray that he was able to sleep and not let his mind play tricks on him. The nurses said he has sundowner real bad. Lortab just makes him really loopy and he doesnt like that feeling, every shift the nurses do something different regarding his pain meds.. He finally convinced them to give him some coffee because of a headache they tried to tell him it is because he had "brain surgery" he said no it is not "COFFEE" SINCE he doesnt complain about pain or when asked if he has any and replies no they either NEVER give him pain meds or push them every two hours..what ever the nurses own personal feelings on them.  uugh.  he has been eating realy well but having a hard time because his throat is all aggitated and his voice is really different.  So he had many milestones yesterday with just the communications...actually talking and remembering even though his short term memory is shot thus far, they have to keep reminding him where he is after he tries to sit up in bed (the nurses say)  I think that is the toughest thing for me now...relying on the nurses reports since we are only allowed in 4 times a day for 30 min.  well that is about all for now, very slow going recovery but praise God he is still with us.  The MRI should be able to go smoothly today..he has been much calmer, he was very upset with him self cuz the doc said he wouldnt sit still through it to find out the out come of the surgery and said why didnt i just lay there.. he is just confused.  Well he asked about you folks and I said i had posted to update you.  I spend alot of time over there sitting in the waiting room so not on the computer much.  take care all and keep Don in your prayers..
sheree

[Derek]

Hi Sheree...

Be assured that the prayers and very best hopes and wishes from all of us are constantly with yourself and Don. Each day will hopefully bring an improvement and we look forward to Don making an eventual full recovery. It was very humbling to know that he was thinking of his friends on this website at such a traumatic time. He sure is one hell of a nice fellow.

Very Best Wishes

Derek

[pearchica]

Hey Sheree and Rob: Ditto on Derek's comments- one hell of a nice guy to think of all of us!  My heart is aching for all of you right now, but I am keeping you in my thoughts and prayers with the faith that both of you will be fine long term. However, short term, it's still a battlefield! (I'm really sorry the nurses aren't being more supportive of you).  And I know the drugs are doing a number on him. Nurses in particular are "funny" about giving coffee to patients- I think they forget post surgery that the body still needs caffeine or at least they have to compensate for caffiene withdrawal... take care, please know that we are with you in spirit.  love always, Annie

[carmen g]

Hi Sherree, I am new, but read about what is going on and want to let you know that I will be praying also!  Carmen

[friendtoall]

Poor Don I know this is a hard time for him, and your are right the best part is that he is here and very much a live.   He has a long tough road but with your help and your family pulling together he will recover in no time.  Funny how love is an amazing thing that will make such a difference.  He sounds like a strong willed man and that is something he has going for him.  I hope you find out the result of the the fluid leakage and could you keep us abreast about that?  That sounds sooo scary and for some of us who will be going through it... we would like to know how it happens and what is the solution?   Your posting not only does Don good but helps so many reading these things.  Please give Don our love and know he is always in our prayers.  Keep strong Sheree.   

[chrissmom]

Sheree:

I've been following this thread and want you to know that we're thinking about you all and praying too.  We've been there.

 My son Chris, was 21 when he was diagnosed with a 5.3cm AN.  That was last April.  He has undergone 6 operations since then.  The two operations to get the tumor were difficult (8 hours and 18 hours) . If you wanted to see a nervous wreck with no sleep, I was it.

He had hallucinations, high blood pressure( which went on for 4 months), a racing heart, he had tremors and shakes too,  swallowing problems.  He could not walk, he had vision problems, facial paralysis and a whole host of other things.  They all went away..  Even the facial paralysis is beginning to go away.  It seemed like for each operation there were complications like CSF leaks and infections, allergies to medications but it all went away. 

I hope I can be of some help to you.  Hang in there.  These days after surgery are rough and complications do occur.  I know the doctors seem non-chalant but Raydean told me one thing.  Take notes, write a journal.  Write down questions.  Pursue the doctors and the nurses until you get them to listen to you. Don't give up... I never did.  Now I find that journal useful as I try to present to Social Security the facts that Chris was disabled last year.

Ask those doctors questions.  If there are resident doctors on duty, ask to see the resident for information.  I know that sometimes when a patient is in Intensive Care, you are limited to time to can visit.  Ask, ask, ask and don't care what anyone thinks about you.

[Jim Scott]

Hi, Sheree:

I'm so sorry that Don has had these worrisome complications but, unfortunately, this kind of thing can happen with AN surgery.

Don sounds as if he's upset.  Well, who wouldn't be? Yet I sense that he is struggling to deal with this unexpected trauma as best he can.  That he thought about this website and forum during this time is simply amazing.  Be sure he knows that, even if the thread doesn't receive a lot of posts, many people - who understand this situation better than most - are praying for and thinking of him.  Not all will post.  However, we're here and we care what happens with Don and with you, Sheree.  Please keep us informed as your time and energy permit. 

I know that Don will come through this as others have come through AN surgery complications in the past.   Try to think positive. 

Jim

[nancyann]

Hi Sheree:  Whew, he's having a rough time.   Reminding me of my post op time.  Alot of times the constant lights, noise, his extreme discomfort with tubes, etc.,
                not sleeping long hours  will make anyone confused, disoriented.   My blood pressure was flying out of control also, I remember the neurosurgeon saying
                'I don't worry about high BP post op', meaning they'll give you meds to bring it down, I went to my PCP after discharge & since it continued high I'm now
                 on antihypertensive meds (that did the trick).   I flipped out during my post op MRI - the attendant said he heard me screaming all the way down the hall   
                 'GET ME OUT OF HERE', it did make them listen though !! Hang in there, it IS a tough road ahead, but you guys will get through it.
                 That's why I always say, & to myself, 'keep a peaceful heart.'   You'll need it.
               
                 Please, please, please get YOURSELF as much rest as possible; he'll need you more than ever when you get home.
                 We are all here for you both, don't forget that.
                'Keep a peaceful heart',  Nancy

[Rob7]

Well here I am again...exhausted...
first of all I am sending my mother in law, mother and brother in law to my house for a night.. 3 hours away to see the kids (four of them) to get a breather..I think I will get a breather from them also and be able to hang out with don a bit more..they let ME stay a bit longer but not if I have my groupies with me.
so as for today..he was able to sit through the MRI...WAHOOOOO.  they said 60 to 75% of the tumor was taken out.  the gamma knife is what we will be looking at in a month or so to take care of the rest.  They found out his left side of his throat is paralized, the doc thinks the double vision is a nerve thing.  Apparently there were 11 nerves surrounding the tumor and they had to be stretched and moved and that is the result of the problems...which hopefully that means it will all go away..  He had a WICKED head ache today...probably lack of coffee..they finally had the idea to give him caffine pills.  seems to have helped.  He is still a bit depressed but with the head ache subsiding he was better.  it was not a vein that was blocked it is a sinus cavity around the bone where the tumor was being extracted...it is causing the HIGH blood pressure (at about 198 at any given time)  head aches and the excessive spinal fluid drain.  Most likely the shunt will be put in towards the end of the week..then either back to the ICU or to the other ward THEN...to physical therapy for walking and balance if needed...he has not been out of bed and will not be out until the end of the week..that will be one week of being on his back.  then either home or enduring physical therapy...ANYONE KNOW HOW LONG THAT TAKES??  well enough for now...maybe things will be calm and quiet tomorrow...no more news and worries.  he is getting a lot of rest and is behaving himself.  he has his restraints off...
thank you for all your kind words, words of encouragement and being here..
sheree

[Rob7]

QUESTION...
we were told that the gamma knife was not good for Don because his tumor was so "large"  but now that there is roughly 25% left that the gamma knife is the solution..  Way back a month ago they really didnt talk highly of putting don through radiation because of his age and the fact that it turns the tumor cells that they are more likely to change to cancer...is this WRONG?? Our docs told us this at that initial appt. but now they are giving us another opinion..so i thought who would know best..but y'all!!!!  thank you in advance for all your input.  If you all only knew Don in person...not very un like him to think of you during this hard time..family is good but support from loving people some times ranks up there higher because they understand.
sheree

[Obita]

Hi Sheree:

Thanks so much for the update.  I have been thinking about you and Don alot.

I am so sorry that Don ended up being one of the ones with complications.  It just happens.  Any surgeon will tell you when you are contemplating surgery that they really don't know what they are up against, until they get in there.

I do know that some people have had temporary swallowing problems after surgery.  It seems to be more common in the hard to get out ANs.

Radiation can be risky if the AN is compressing the brainstem (Am I right everyone?? That is what they told me anyway).  Now that 3/4 of it is gone, they can radiate the remaining part.  You can ask his surgeons but I would imagine that they got the part of the tumor that was compressing the brainstem.  They probably left the part that was in the IAC compressing the nerves.  If that is the case, radiation will work just fine.  It would be just like radiating a smallish AN before it grows out of the IAC and compresses the brainstem.

The nerves will usually regenerate and settle down but it takes time.  The AN stretches them and surgery messes with them.  In time, they mellow out.

Good luck to you and Don and keep the updates comming.  Kathy

ps:  that thing about radiation turning the AN cells into cancer is a bunch of hooey -