Author Topic: Best Wishes to Palace  (Read 19578 times)

Patti UT

  • Hero Member
  • *****
  • Posts: 709
  • Keep On Keepin On
Re: Best Wishes to Palace
« Reply #45 on: December 05, 2006, 05:52:18 pm »
Palace,
  So glad  the treatment went well. Hope you are feeling better

 DIE TUMOR DIE!!! 

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #46 on: December 08, 2006, 08:11:20 am »
 :)

Hello,


I'm one week out of Stanford today.  Here is a new thought for you to ponder.  (something I haven't heard mentioned on this forum before during my time, anyway)  I'm thrilled that it is this time of year that I had CK done because, I didn't have to take that Decadron pill, meaning steroids.  (so far anyway and time is looking good, on my side)  Here is my thought!  This time of year in winter, over-all body has less swelling in general.  (you know, feet swell for people in summer/heat, hands swell, (hard to put on rings over the fingers in summer) we seem to swell.  My thought is maybe, just maybe it is in my favor to have less swelling after the CK because, it is freezing and winter here, in Northern California!  It is just a thought but, I'm taking all the help I can get.  (anything besides steroids to help me get through this with the least amount of swelling due to my reaction to Prednisone/steroids and probably, the Decadron.

I'm thrilled so far with the way things turned out for me with the CK.  The first five days were rough with the migraines daily, exhaustion, increased balance problem and increased facial pain.  Now, all those things have subsided to a great deal.  I had some on and off increased ear pain in the first five days but, today I feel close to a normal person.  My ear fullness is cut into about half now.  The loud "ringing and banging" in my bad ear is the same.  I do feel like perhaps my hearing is even less in the bad ear since CK but, I'm really happy so far, OVER ALL.

This is my story one week today, after Cyberknife with a rather large tumor.  If a tumor that has had radiation grows back.........where does the growth begin?  Does it grow all around from the outer edges of the entire tumor, or just from one spot of the left-over tumor.  I know about one-third of tumors can shrink so, I have read.



Thank you for reading my posts and any info,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: Best Wishes to Palace
« Reply #47 on: December 08, 2006, 11:28:01 am »
Hi Palace,

I just noticed your post has SSD listed at the bottom.  Did you have that before CK?  Just curious..

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #48 on: December 08, 2006, 11:37:56 am »
Hi Mary,


Maybe I put that wrong.  I was not completely deaf when tested but, nearly.  It seems like it is worse since the CK but, hard to tell.  I have a slight bit of hearing on the right but, I will be tested in six months along with the next MRI.  (so, maybe I put that wrong but, I'm nearly deaf in that ear)  Is that not single-sided-deafness?  I have to say, "What did you say, all the time?"  I couldn't understand a movie when we tried one a couple of days ago.  (even turned up I caught words here and there)  It was tough.  I will give it the six months and see what the next test shows.  (should I remove the SSD........maybe that is not correct because, I can hear muffled tones on the phone, on that side)

What does anyone think about having this treatment done in winter and perhaps helping with the swelling incident?  Does anyone out there think maybe the time of year I had this done, helped me with not having much swelling?

Good to HEAR from you Mary!



Hugs,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: Best Wishes to Palace
« Reply #49 on: December 08, 2006, 11:46:00 am »
My AN side hearing is also diminished but I can still listen to the phone on that side.  But it is definitely not as good as before.  I found myself in noisy places to have to listen carefully or turn my good ear to hear or look at their lips.  I sometimes have to ask "excuse me, could you repeat that?".  I am hoping this is not a permanent condition.  May be it's caused by swelling.  Who knows.

Hope you are doing well.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #50 on: December 16, 2006, 02:21:19 pm »
Hello Friends:


I have had a migraine headache either at night or morning almost every day or night since the CK.  I made an appointment for next Friday to discuss some issues/symptoms with the ENT who originally ordered my MRI.  (which showed the 22mm AN)  I'm very impressed with this doctor so far.  He is in Santa Cruz....(I'm not refering to the doctors I saw at Stanford right now for the Cyberknife TX)  This doctor can maybe give me some answers about the migraines because true, I was tested for allergies many years ago by another doctor and by the way, they didn't order an MRI.  (another doctor in Santa Cruz, CA., at that time)  Well, I'm the highest tested around this area to redwoods trees and molds.  It is difficult to distinguist at times, what is causing the migraines.  (the AN or otherwise)  My neck felt like someone broke it last night.  My ear hurt a couple of days ago when we went to about 2,100 ft. level in the mountains on a short trip.  My ear hurt all that day and it feels really "full," again.  My facial pain was bad last night but, I admit I took Aspirin today.

Stay tuned just in case any answers might help others.......open to any comments or suggestions.....



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Crazycat

  • Hero Member
  • *****
  • Posts: 804
  • Self-Portrait/ "Friends, Romans, countrymen...."
Re: Best Wishes to Palace
« Reply #51 on: December 16, 2006, 11:59:00 pm »
Palace,

  Were you susceptable to migraine headaches before your A.N. problems?
I ask this because it seems very strange how headaches effect us all differently. You know that I had a huge growth and had radical surgeries for both the tumor resection and the shunt installation. In spite of all that I never had any really bad headaches to speak of, before or after surgery - with the exception of the first few weeks after surgery as I was healing up. I went through an 8 month period without having to even take so much as an aspirin during my recovery. 
    There are people who get migraines and people that never get them. So far, I've never had one, thankfully. I know of people that are severly stricken with migraines. They can be touched off by a food allergy - among other things - and the tendency to get them is inherited. We should start a headache thread to compare notes on this subject alone.

                              Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #52 on: December 17, 2006, 02:54:53 am »
To Paul and others,


When I lived in LA I never took pills or needed them.  When I moved to this area up north, all my med problems began.  No, I didn't have headaches in Los Angeles area.  I lived in the desert area to begin with and then the beaches.  (without any problems)

When you age, your body changes so it could be the allergies to this area I live plus, getting a bit older so-to-speak.  Over all, I always thought I was an extremely healthy person.  My only problem in my youth was, I could never sleep.  I just stayed up all night doing things.  (getting things done)  I do remember now that I think of it, taking a Valium on a Sundday each week just to get one nights rest.  Other than that, no pills.  I have a slight curve of the spine so, that might be some of the neck problems, along with the AN as, that got worse over the past few years.  (the AN not being properly diagnosed and getting larger)  So Paul or anyone else.......can it be the fluid is cut off, perhaps?  (that is supposed to flow)  You know about all that.  (those who had a shunt)  I'm not knowledgable in that area at all.

I have lived on Imitrex for many years now.  In fact I have only a few pills left and never ran out.  I'm about to run out.  You only get a few pills on a card and the card cost is, two hundred eight dollars, without the insurance kicking in.  I have fifteen more days and they will help me with the percentage of getting another card.  They only pay for so many pills per a duration.  Reasonable but when you are aflicted as I have been lately, I ran out of my quota.  I hope I don't have to resort to getting the pills without the insurance percentage, this next bout.  It is one in the morning as I write this.  Sometimes I don't want to go to bed as, that is when the headache comes on, the most.  I moved to the front part of the house and I'm camping out there by the fire where it is warmer.  That helps some of the time when it is in the upper twenties or low thirties, outside.  We are having snow now on our local mountains.  (not in my yard but, close tonight)

If there is a "headache thread," I'm a good candidate for that.  (very experienced)  I thought the rolling colored lines I would get would be connected with headaches but, "I used to say to my husband that I wondered if I had a brain tumor," when I would get rolling colored lines across my vision and it would last say, about five or so minutes.  (I did wonder if I was not diagnosed properly and had a brain tumor when I would get those lines or the times my head would feel like it was about to blow-up, if I would be sitting and suddenly stand up)  For an extremely athletic person, all this became very frustraiting.  I'm the thin and wire-type.  (and yes, TYPE-A person in the past)  This AN put a big dent in my schedule.  Fatigue is now on my speciality list, too.   ???

I'm sorry..........I wrote way more than I planned to do on answering Paul's question.



Good night or good morning........Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace (Cyberknife, symptoms and allergies)
« Reply #53 on: December 22, 2006, 09:14:29 am »
 :)

Ok, it has been three weeks this morning, out of CK.  (21 days)  I have an appointment with the ENT doctor that first ordered my MRI.  (not Stanford but, in Santa Cruz)  I will try to get a prescription of the injection Imitrex for my headaches.  I'm out of the pills and the insurance won't pay their part for anymore pills for a couple more weeks, at least.  They cost well over two hundred dollars for just a few pills.  (just a few pills on a card)  That would be without insurance.  I usually have the 30 mg spray Imigrex, the 100 mg pills of Imitrex but, I'm out!  I have never been out before.  If I can get a prescription for the injection type today, I would think the insurance would cover a new prescription, by a different doctor and a different type of administering it medicine.  That isn't why I made the appointment, though.  I need to find out which symptoms are allergy related and which are AN symptoms.  (seperate)  In other words, which can be treated and which am I "stuck" with.  (not meaning stuck with an injectible needle of Imitrex!)   ;D

Here is where you come in..........can any of you think of any questions I might ask that are appropriate, considering everything?  I leave in a couple of hours.

I have that severe neck pain.  I'm the highest tested in this area to redwood trees and molds.  (tested by a different doctor, years ago...........ENT.........the one that should have sent me for an MRI in the first place)

I'm just wanting to get rid of migraines, neck pain, you know!  (if possible)

I used to get the injections which were made specifically for me.  I got those once a week but, you can die from those..........on the spot.  I know of one person who did.  "The old A-shock, again!"  I took those shots for a year and then QUIT.

I'll report back what happens today, if anything.  It is expensive so I had better get some answers.  This is the place I will be getting my audiologist testing again, in about six months.  *(the follow-up for Stanford and then the cons with the Stanford docs about that and the next MRI)

I appologize that this got long.  Do you have any questions I might ask the doctor today?  You all know my history by now.



Leaving soon,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #54 on: December 22, 2006, 10:34:59 am »
 ;D


Hi All.......


I'm leaving in one hour and trying to think of all the questions, I can.  This is the doctor that gave me steroids in the very beginning, when I landed in ER from the Pred.  (A-shock)  I know, it seems impossible to be allergic to something your own body makes naturally but, the symptoms were there.  I couldn't swallow or hardly breathe.  The throat was about closed.  Here is my theory on that........steroids can play tricks on the brain and make a person stressed.  Was my throat really closing well, it felt like there was only a pencil opening of air left, at the time.  I surely wasn't going to take any chances and I don't ever want a steriod again.

PLEASE SEE POST ABOVE THIS ONE.......



Thank you all,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #55 on: December 22, 2006, 02:24:41 pm »
Hi


I got the inject-type of Imitrex.  (6 mg. only and the doctor would give me a prescription after having the allergy testing)  I was tested many years ago by a different ENT, as I mentioned before.  I made the appt. for March.  I have "had it" for this year!



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Best Wishes to Palace
« Reply #56 on: December 25, 2006, 07:31:49 am »
 :D

I fooled ya!  No, I didn't go to ER again for a Christmas Eve party!  (only the night before last, with that foot opening up, ordeal)

I switched off the Valium last night to Ambien for sleeping.  (no headache and the neck isn't too bad this morning)  The cheek still hurts, balance not too bad, ear rining extremely loud, a few ear pains, fullness in the ear and somewhat metal taste.  That is it for 06' and will get back to you once I have the allergy testing to seperate which symptoms are AN and which are allergy related.  (in a couple of months)

Now, we face the up and coming New Year's Eve, next week.



HAPPY NEW YEAR..........Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness