AN Newbie

[Rob7]

i am so intrigued on the amount of people that read Dons post....Out pour of support and concern is just outstanding..  Like I have stated before just because the people are not posting comments I can see the love.  i will pass it on to Don in the hospital..he really is needing to know of the support and to see people come in to visit him.  He is REALLY worried about the surgery tomorrow and it is so hard for me to only see him 4 times a day for such a short time and to share that time to boot with family members.  i allow that to happen because I understand they need to be with him too.  I dont get to see him until 10 and sometimes the nurse on duty allows me to stay 5 min longer then the rest..and don just gets so overwhelmed with emotions that it is so hard for me to leave him.  I know this will all be behind us soon and we will be home recovering.. if we can get him to eat better, and stay hydrated the rest will just work out I am sure..
take care and thank you again
sheree

[ppearl214]

Sheree, since it's St. Paddy's weekend, I'm feeling the luck of the Irish with Don for Monday!

*tickles Irishwench O'Brien for a proper Irish giggle*

Hang in there Sheree... and thank you again for the updates. Please take a bit of time for yourself as well.

Phyl

[MLB57]

Hello Sheree ---I am a regular visitor/poster to this site--I am one of the NE bunch brunch (Phyl is our orgainzer extraordinaire!!)--somehow I missed this heart-wrenching drama until I saw it today--my heart goes out to you and Don and in some ways it is more difficult for the loved ones as they can feel helpless--and with receiving conflicting info it can add insult to injury!!! It does sound that Don unfortunatley had complications that the surgeons never know about until they are into surgery--but it sounds like they are doing all they can to make him well.. But be ever vigilant for explanations so you know exactly what's happening..

My 1 cm rt AN was removed retrosigmoid Jan 2001 and altho my surgery was "uneventful" I still had problems resulting from the surgery for some time--facial nerve/swallowing/dry eye/tinnitus/balance and all have greatly improved over time and I can live with--for example I can fast dance and (I am 58 now) w/not much problem but after surgery was on a walker for couple of weeks and so fatrigued I didn't return to work for 3 months.
I guess what I want you to know is that the road back will be bumpy w/twists and turns, but with the love and support of family and friends one day the thought of your journey will make you smile as you will realize how much you went thru and how much you have overcome!!

Unfortunately my AN is re-growing and I have seen several neurosurgeons and radiation specialists--I will have radiation not surgery as surgery didn't stop it first time--I do not regret having the surgery and would probably do it all over again  but now radiation sounds like the best option-- I believe Don made the right choice and if the surgeons had been able to get it all then no further treatment would be necessary, but since there is a substantial part of the tumor left, then radiation is a good option... and I do agree w/Bruce forn research I've done that odds of tumor turniing cancerous are small --but you will run into neurosurgeons who are concerned  about that possibility where others I've met do both surgery and radiation!!

Please know Don and you are in all of our hearts and thoughts!!   Take care--Mary from MA..

[jason z]

Hi don

I had a 3+cm removed 5 weeks ago.Not an easy surgery but then again were not getting a tooth pulled. I am fortunate that my tumor was able to be removed from my facial nerve without much facial weakness because at Mass General Hospital(BOS) they use a face nerve monitor during the 10 hour surgery.My tumor was pressing on my brain stem and I was having headaches and my neck was killing me. The hardest post op effect has been dizziness and balance. My first three days in the hospital were very hard and you should hope for the best for yourself but if you are having your balance nerve cut expect to be dizzy.Everyone is different but I did not find this easy at all and neither did my loved ones.My doctors however are pleasantly surprised at how well I am doing and and said I should be back to work in another month or two which will be 3 mths total out of work. I am still plagued with headaches but they are getting better each week and so is my dizzy/balance problem.This web site really helped me through the process and staying positive is important.I'm sure well hear from you again as you will have a million questions for us

[Crazycat]

Alright Jason!   Good to hear from you! I'll be coming home second week of April. Hope the freakin snow is gone by then. I'll call you soon.


        Paul

[kss4luck]

Hi Newbie,
Today is the day for the shunt and I'm praying for you and your family. All will be well soon and he will be home with the kids feeling great.

[Crazycat]

Don and Sheree,

 I read through this thread for the first time just now. I had no idea that you were having such a rough go of it. A.N. surgery is a very hard and scary kind of surgery especially because that, in many ways, it effects each of us differently due to the nerves involved. Oftentimes the doctors themselves cannot accurately predict what the outcome will be.
  I went through the mill with a huge tumor as well as having a shunt put in. I had three surgeries: two for the shunt and one for the tumor "debulking". The shunt is in permanently. I went through a great deal. I spent a lot of time in the hospital but I emerged from it all in decent condition. I had great doctors. I'll probably never be the same as I was before but am still doing well. I think many of the problems that we're faced with - excepting hearing loss - will heal over time. The doctors told me be before my surgery that it would be a "long recovery". They were right.

   My first surgery was for the shunt installation which had to be done twice because the first one had somehow become dislodged. The tumor resection came a month later.

  Although it may seem impossible at first, I'm sure Don will get through this tough and terrible time.


   Paul

[er]

Hi Rob

How was your surgery? I sure hope things went well?

eve

[friendtoall]

Has anyone heard anything about our friends Don and Sheree?  Sorta worried no one has posted in a while.

[kss4luck]

No I've been worried myself, keep them in our prayers

[Obita]

Hi Sheree and Don:

We are kind of going crazy on here wondering how the both of you are.

Please post that all is well..............

Kathy

[Rob7]

Hello all~
Don came out of surgery just fine...the doc came and saw him this afternoon and said all went well.  He is in a lot of pain and hoping the pain meds take care of that..
we had a surprise visitor today...Chaplain Spears (we knew him from Alaska) he just happened to be in Georgia  so came to visit.  Don just is so happy after a visit.
HAPPY DAYS.......
he had a rough night of NO sleep but he is DRINKING AGAIN....something from the surgery (OR TIME) has made it easier for him to drink.  He had a rough bought with pain and by evening he was up walking the halls...WOW what a difference.  I stayed in the hospital room with him WHEWWW that was rough...no sleep at all they bug you all night long..dont bug you during the day but man oh man.  anyways the docs are REALLY pleased with his progress and time to go home is WAY earlier than we were looking at...just need to get through physical therapy for walking and throat.  Do the usual things that need to happen before they release him from the hospital then re evalutate... I think I could go home and sleep for a week....uugh!! But that won't happen!!!! LOL  It was just a WONDERFUL boost for him to see Chaplain Spears and he also had many co workers come and see him yesterday..forgot to mention that.  I can see such a difference in him when he feels teh love and concern from others.

Well as usual I am set back once again..things were looking so forward...BUT...
don is having trouble with the everyday normal things... hydration and BM!!
he cant do either..and I am afraid he is getting angry with me because I am pushing him to drink and walk to move those bowels...I am sure he would just DIE to know that I am telling you all this.. He is having a bit harder time drinking than he let on (go figure) therefore once taken off the IV today he rapidly began to dehydrate.. and they have tried most every thing for the BM and now has a bottle of this bomb stuff (some of you may know what I am referring too UUGHH) He doesnt want to do it tonight because he knows it is the last night he gets to spend with his brother before he flies out tomorrow. I am afraid of driving home the three hours and then have to travel back because he is getting dehydrated or cant have a BM!!  Other wise he got a "cool" walker with wheels to travel the halls and has had pretty much no head pressure or aches today..  I think I am just tired so am pushing him too hard, I am back at the hotel taking a breather and making him some decaf tea to get some liquids down him...

it was a rough night..he didnt get all that much sleep but hey any is better than none...
his head hurt all night long...is it because he has a shunt in...could be. well they took an Xray this am of his bowels to see what the deal is and i am heading back over there to see what they are going to do for him..
His eye is bugging him more and more hope that doesnt stay too long that way! and he was able to walk alot yesterday but he sure was tired tired tired out last night..slow recovery that is what I keep telling him.   we are going to stay here even if they discharge him...I dont get a warm fuzzy driving all the way home with him not having the drinking and eating under control and by the way they ARE NOT going to let him out of the hospital until a BM happens...we will hang around here until Saturday (when becky flies out and I feel better about leaving his hospital. Don was just commenting this am (yes at 3 am) how wonderful it is to have the support system we have here and afar!! 

Got my mom and Roger off to the airport today..
Lois just left with Sal to head to Enterprise and I just told Don to take a nap.  He sure is wore out..he is still having trouble with the BM!!  They have given him some more liquid stuff to make him go and it is NOT working YET... they say it will come.  Since we are going to stay in the Marriot until Saturday they said we can discharge in the am.  As long as he can stay hydrated  the next three days then the worst is over on if he can stay hydrated or not.  If he does get dehydrated  the doc said his mental status will alter first since he has had brain surgery...and to NOT let him get dehydrated...ok well then he needs to stay away from the coffee....hmmm try to tell him that!! LOL.  They came and took his staples out from his initial surgery a little while ago and that is looking good.  The other staples and stitches will be taken out the end of  next week. it is going on two weeks now!! WHEEW  I just took a deep breath to begin the next step of this recovery.....
take care
sheree

[flier58]

Hello Don and Sheree,
I am checking this thread daily but posting for the first time.  I'm keeping my fingers crossed that all will be OK and this difficult journey will finally ease for both of you. /and Sheree, you are the unsung hero here.  Please take care of yourself as well.
My prayers are with both of you.
Flier58

[krbonner]

I haven't posted to this thread yet, but please know I've been thinking of you and your family during these trying days.  I will continue to send positive vibes your way!

Also, keep in mind that most of the Rx pain meds have a constipating effect.  I was only on them 7 days and it took my bowels close to 4 weeks to recover.  Something to ask the doctors about if you haven't already.

Katie

[Omaschwannoma]

Sheree thank you for taking precious time to fill us in.  Very glad to read the second surgery went well and the shunt is helping.  Don you have many far away friends keeping a vigil on your progress.  Your wife is doing an excellent job of keeping us informed on your progress and I am very happy there is talk you will be going home!  Please, please, please don't forget your healing can take a while, then again if it doesn't that is "icing" on your cake!  Nevertheless, don't be discouraged and remember Sheree is taking on the roll of keeping you "on track" with healing, be a good patient to her--she's all you got.  Be sure to communicate to her when you are becoming annoyed, impatient, as our caregivers don't read minds.  Sheree, don't be fooled by Don's good days as the nature of healing will throw in many bad days too.  Just as long as the bad days aren't too many in a row.  I am very happy for both of you and look forward to the day Don types his own message!