AN Newbie

[nancyann]

Hi Sheree:  I can't help with the radiation issues, I was a surgery only pt.     But, as for PT,  I was really undsteady in walking for awhile.   They sent me home with a walker, which I didn't use (along with a commode !);  I 1st took short walks with my mom by my side - I explained to her I felt like I was walking on a surface suspended by ropes, kind of swaying (I'd pretend I was walking on a suspension in the rain forest!).   4 months out (even though I was working), I finally decided to go for balance therapy - it was rough at 1st but definitely helped (even though I didn't practice the excercises like I should have).  Walking in the dark was the last thing to improve.  I'm doing pretty good now (almost 9 months out). 
Stay strong Sheree, keep a peaceful heart,   Nancy

[ppearl214]

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

Hi sheree,

I am sending you and Don a MAJOR huggle!!!!!!!!!!

I may be able to help with the radiation question and hope others familiar will also chime in.

Sometimes a residual piece of the tumor remains if the tumor is too "sticky" on the nerve to be completely removed. That is the possible case with Don.  By leaving a small piece of it means they are doing what they can to keep the integrity of the nerve without enhancing chance of damage.  Now, many that have had residuals remain do follow up with radio-surgery, whether Gamma Knife, CyberKnife or FSR/Novalis.  When the residual is that small, it is easy to radiate the tumor, then ensuring tumor death by killing the core DNA of the growth. 

Please know this about radio-"surgery".  (anyone else want to chime in on this, please do....). The radiation that is used is not "disposable" radiation such as the kind that is used on cancer patients.  Many drs will use a "scare tactic" of noting radiation cancer to sway folks from doing radiation when it is not their "cash cow" or they are unfamiliar with radio-surgery techniques available. Heck, I have  more of a chance of getting hit by a mack-truck or some other disaster vs. getting cancer from my Cyberknife treatment.  There are many here (jcinma is my first one that comes to mind and I think JimScott as well) that had their tumors "debulked" then did radio-surgery follow up.  They can attest to the process and how they are doing (I think Jim finished his radio-surgery late 2006 if my memory serves me right).

Hang in the sheree..... I know it's been an initial tough journey, but we are going to help you and Don get through this "bump" in the road. 

xoxo
Phyl

[chrissmom]

Sheree,
I'm following your story closely.  I can relate to your frustration.  If they are thinking about a shunt, hydrocephalus could be causing the headaches you describe.  Chris had horrible headaches after the operation. He hadd several bouts of hydrocephalus and hsi shunt failed.  They had to put in a drain and with that he had to stay in ICU  Of course, the brain swelling contributes too.

 As for walking, he'll probably walk soon.  Chris spent the whole summer on his back (4 months) and he was totally unable to walk.  Once they got the pressure off the brainstem, he started to walk.  He has been in Physical Therapy for months and just last week they decided to try him without it.  We're hoping for good things here and no relapse.  He refused to use his walker after he left the hospital.

I don't know anything about the radiation but Chris has a small part of his tumor left too (4 mm).  His doctor prefers not to zap it because he is only 22.  So we are in watch and wait mode.

Another thing to watch is Sugar.  Chris is not diabetic, he never was but during these operations he required insulin shots.  That went away too.  It seems like this tumor just upsets every part of the body.  Hopefully, it will all go away for Don too.  Chris takes no medications anymore.  Sending you hope and hugs.
Rita

[Rob7]

WOW.... ask and you shall recieve...
thank you thank you for the info..
he had a really good day today they got him up out of the bed and into a chair...he was exhausted and messed up his catheter so he was in pain he slept for a long time after that episode.  but encouraging enough. he is OFF the blood pressure meds and it is holding just high hypertension rate.. his output on his external shunt has slowed down a bit.  they are going to clamp the shunt and watch it for 24 hours...scan his head to see if he is absorbing the spinal fluid. when will that happen who knows... hopefully by early next week they said they will know either to not have to put a internal shunt in or proceed with the surgery.  the paralysis in his throat is still there and the voice issue along with the double vision is still there..I am sure those things are going to be travelling home with us.  he is still a bit down but I am trying to keep him up beat.  It was kind of nice to be alone today if that sounds crazy...the mothers and BIL are at my house. My sister in law comes in tomorrow to replace the lady that is watching the kids at home.  Surgeon goes on vacation tomorrow for a week...hopefully his goo roos (his team) will keep us well informed and well taken care of!! 
sheree

[Obita]

Hello Sheree!!

What great news you have for us!!  You must be so relieved.  I sure am.

Please say hi to Don and tell him we miss him. 

Kathy

[sharibari]

My thoughts and prayers are with you both and your family. I am glad to hear he is improving. I wish him a swift and speedy recovery. I am new to this site and have been following his progress. Best wishes. Shari

[chrissmom]

Sheree,
Still following you.  It's amazing how strong you are and how you are orchestrating all of these things in your life. The kids, the family...everything.  It takes time but things do improve. 

I sat beside Chris as much as possible all last summer.  When he was in Intensive Care, I wasn't allowed in there for more than 20 minutes or so and then twice a day.  He asked, "Where will you go, stay here".  I stayed on the other side of the wall outside the NeuroIntensive Care Unit day after day.  I asked questions, talked to doctors, nurses etc.  I monitored every step of his care.  When I was in the room, the only thing I could do was rub his feet.  He loved that !

[nancyann]

Hi Sheree:   I know you're busy (that's putting it mildly); 
                  Hoping things are continuing to improve for Don...
                  It's a long journey you're on,  hang in there.
                  Hope you're getting rest when you can.
Keep a peaceful heart,  Nancy

[Rob7]

hello...
busy..well that is a funny term but yes and no..wait wait wait then just a short 30 min that I have to share with everyone 4 times a day.
double vision is getting better
voice is still a whisper
throat is still paralysed
he has not been able to walk yet to see how his balance is going to be.
they clamped off his external shunt for 24 hours and it didnt pass...once they did the scan this am to see if his body was absorbing the extra spinal fluid.  THEREFORE another surgery on monday..a shunt will be put in.  they are thinking of putting a PEG tube in also.  he has lost 18 lbs or so thus far in a week.  he can not eat a whole lot and is starving.  I am worried about him getting malnourished.  we will see. thanks for reading the posts I know you are all thinking of don and praying for him if you do.
sheree

[Jim Scott]

Hello again, Sherrie:

Let me join the other posters who are extending their concern and offering prayers for Don's recovery as well as strength for you. Glad that you're getting a break from well-meaning family for a bit.  It should help.

During my hospital stay last summer (when I had my AN surgery), I spent 3 days in the ICU.  My wife stayed with me a good deal of the time I was in ICU.  She slept in the nurses lounge on a cot the nurses graciously set up for her.  Initially, she was told she couldn't stay with me that long but she challenged the nursing staff by stating that she had been by my side for 36 years and was not going to leave me, now.  As I was doing well (no complications) my neurosurgeon, who was well-liked and highly respected at that hospital, told the nursing administrator that he had no problem with my wife sitting by my bedside and talking to me when I was awake.  She stayed.

Physical therapy can be very beneficial in AN surgical recuperation but I'm afraid there is no definite time-frame as each patient has different areas that need 'work' and we all respond differently, too.  The hospital therapist can give you more complete and specific information once Don has been evaluated.  He will have to work hard but it pays off.

As for radiation treatment, I'm surprised your doctor didn't mention FSR (fractionated stereotactic radiosurgery).  FSR is becoming more common as a post-surgical treatment to remove any remaining tumor while avoiding facial, motor and sensory nerves.  My neurosurgeon went this route with my large AN (4.5 cm) and it was very successful.  He hollowed out ('de-bulked' in medical jargon) the tumor (down to about 2.5 cm) and last fall, I underwent 26 brief sessions of low-dose radiation.  A December MRI showed some signs of necrosis (tumor cell death).  I can't wait for my next MRI in April!  For Don's sake, I would try to look into FSR before committing to any of the other, high-dose radiation treatments you mentioned.  Consult with a radiation oncologist.  He'll have the specifics.

Meanwhile, try to get as much rest as you feasibly can - and stay positive.  You and Don will get through this.  We all do.

Jim

[Omaschwannoma]

Hello Sheree and Don,

I have been reading about your progress and pleased you have so much support.  Each day is progress as I read and I am very hopeful and happy for both of you.  The days can be excruciatingly slow-mo, so the best thing to remind yourself of is as long as you see progress, even itsy bitsy forward moving it's all a very good sign of healing--just takes TIME.....You're probably tired of hearing this or you will hear this over and over shortly.  Sad but true.  Deep breathe when you feel overwhelmed, a simple but very effective stress buster that clears the mind so you can "hear" the answers to your questions. 

[Rob7]

dons face began to be weak on his left side..hopefully it will just be slight and wont last too long..who knows...TIME is the answer for most things.  He is trying so hard to learn to eat and drink with out choking..trying to not have to have a tube put in his belly or through his nose.. most everything is still the same.  surgery on mondayfor the shunt and then move on to figure everything else out.  i inquired about FSR and got the low down on it...thanks for the input and advise.  until next time..sheree

[ppearl214]

sheree... you just rawk in my book!    thank you so much for taking care of Don and keeping us updated and ... well, just for being you. Please remember to take time for yourself, as well.... we need to make sure you keep your strength up as well!

Hang in there and please tell Don continued wellness and speedy recovery!

Phyl

[nancyann]

Hi Sheree:  I echo Phyl's sentiments.   Take care of yourself, we're here for you & Don.

[Obita]

Hi Sheree:

Quite a few of us surgical patients had the late onset temporary weakness on our AN side. 

Good luck on Monday and say hi to Don please. 

Hang in there, Kathy