Topic: Oldest Daughter has a growth on the 'brain'
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Every fathers nightmare,,,my oldest daughter just called and said they just found a growth on her brain the last few days over the holidays.
At this point they are saying it is non cancerous---thats the GOOD news!! The 'BAD' news is its the kind that grows back,,,forgot what she called it!!
It is pressing on her brain and her skull bone and causing eye problems and other popping things in the ear. It is right behind the ear and a bit lower.
Part of her skull will have to be removed to take it out IF that is indeed what they determine needs to be done (sorta obviously)
Its obviously always a terrible shock to hear such news. As bad as it is,,,or as good as it could be!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Oh Don!
Goodness, I am so very sorry to hear this news, and so very sad for you as I know how much you love and cherish ALL of your children.
Keeping you close in my thoughts and prayers for strength, endurance, and acceptance for whatever may come.
With much love, now as always, Melanie
(and hey, I am only a click away if EVER needed)
Posts: 7052 | From Colorado | Registered: Mar 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Don,
What a shock!!! I am so sorry, but grateful that it isn't cancer.
Sending your daughter and you all of my positive thoughts and prayers.
Please keep us posted on how she is doing.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Oh Don,
I'm so sorry to hear this. I do hope it will be taken care of the easiest and best way possible.
I'll keep postive healing thoughts heading her way and yours.
If there's anything I can do...
TBF
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Sorry to read the news about your daughter, but am glad it does not appear to be cancerous. I know that you will be a pillar of strength to help your daughter get through this trying time. And of course, we are here for you as well. Please keep us posted.
Your neighbor, Ima
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Sorry to hear about your daughter Don. I will say a prayer for her and for you too.
posted
Dear Don, I know the phone call from your daughter is a parent's worst nightmare. I'll be keeping you and your daughter in my thoughts and send her
all the positive energy I can muster. Please keep us posted and allow us to support you!
This is my shoulder...it's really not that pointed: ---^^^^---
Blessings to you and your precious daughter, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Don so sorry to hear about this. I have a friend, whose 17 year-old son went through this last year. His surgery was successful and he didn't lose his eyesight. He made a very quick recovery.
Thoughts and prayers are with you.
Posts: 298 | From Maine | Registered: Jan 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Don,
With news like this, words always fail me. Thankfully, it's not cancerous, but I'm really sorry to hear any of you have to deal with this at all.
You and your family will be in my thoughts and prayers, and if you ever want to talk, just pm me, and I'll send my phone number.
You take care, Don,
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Don,
I'm so sorry to hear this news. I can only imagine how I would feel if it were one of my kids. I'll keep you and your family in my prayers.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I'm so sorry. As you said, this is every parents nightmare.
I will keep you and your daughter in my prayer. May you find peace in this difficult time. Posts: 628 | From the south | Registered: Dec 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Yikes, sorry to hear that Don...Jenny and I will be praying that everything's OK.
Posts: 2804 | From Texas | Registered: Oct 2000
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bettyg
Unregistered
posted
don, my heart goes out to you/your daughter/family during this "fear of the unknown". we can all deal with what known is after we get thru acceptance and anger.
aren't you glad you have that special relationship to your kids where they can come to or phone you about such things? she's got one heck of a dad that we'd all be glad to claim you as our own JUST DON DAD!
when you find out the name of it, please go to NIH med library for help/assistance! i have found it very user friendly to me the past 10-15 years.
it's set up by illnesses/diseases; drugs, a dictionary, etc.
i found that if i look up the illness, then chose dictionary, it brings up the terminology FOR THAT ILLNESS!
my best wishes to you all; keep us posted ok; healing thoughts/prayers headed your way don.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Wait a minute...
Why are they calling you by those OTHER names?
Don... and Oh Don?
I thought yer name was JUST Don!
Yes.. this is a father's worst nightmare. Anytime you must watch your child when they are hurting and scared.. well that is really painful and heartbreaking. I actually think it is harder on the parents when there is a crisis like that.
And such a helpless feeling too. You want to be able to make it go away.. no matter how old they are.. but sometimes it is impossible to do.
My thought is she comes from a good strong family.. and has your love and support.. and that will mean a lot to her now. She will feel YOUR strength.. and draw from it.
Cause Just Don.. you are her daddy... and you keep her in your heart... and always will. She knows that.
I will keep both of you in my heart and in my prayers. Do let us know if we can do anything to help.
posted
I know someone that has an inoperable brain tumor (no cancer) -- they have a shunt in. Was diagnosed 3 or 4 years ago I think. Anyway, they just had a baby and in talking to this lady she says that if all goes well she would like to have another baby in a couple of years.
At the time I met this person I was thinking to myself that life was so unfair that someone with a brain tumor could be making plans for 2 years down the road and many Lyme patients have problems planning 2 weeks in advance let alone 2 years from now. Anyway, in your situation maybe this info will give you hope.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Don,
Praying that all goes well. Keep us updated please.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
sending prayers your way...
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Goodness, Just Don. I hope you can give us more par-ticklers soon. Sending good wishes your way. Please pop in with an update.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Thank you for all the heartfelt warm wishes!!
Truly blessed with a wonderful lyme net family!!!
We wont know anything till she talks to doc next! Now I forget when that was going to happen.
Time will tell in regards to THIS one!! God's blessings to ALL of you!!!cuz ib --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Hey Dapper Don,
I will keep you and your daughter in my prayers.
My little guy has had two operations for benign growths in the ear. It is scary, but quickly became less so when we learned it was operable and benign. Like your daughter's though it unfortunately was the kind that could grow back.
If by any chance it is cholesteotoma you can PM me and I will share my experience with you. In our case it sounded a lot worse than it was. My boy was having pain and problems hearing, and the surgery corrected that.
Good luck to you and yours, Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
So sorry your family has something else to deal with. Be assured that your LymeNet Family is sending lots of love, concern, & support.
Will keep all of you in our prayers.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I talked to her again yesterday. She is MUCH more relaxed and comfortable with whats going on. Guess she is alot like me and just takes time to get ones mind adjusted accordingly to the situation.
She goes back to her doc , the real one, Monday so might know more then. So far they are calling it a grandoma(sp) or its more like a cyst.
They are trying to compare it to prior MRI when she was having ear infection troubles in THIS ear area. She only has less than 10% hearing in this ear now.
She got the BAD bad infection working as a hospital RN and LOTS of bad bugs brought into a hospital setting.
She has the advantage of working at a university teaching hospital,,the good news is she has NO shortage of other doctor opinions of whats to be done. The BAD news is she has no shortage of other doctors opinions!!
Some say it really doesnt have to come out. Others say its causing ear and eye symptoms already and really should be removed!
Time will tell!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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I'm glad she is feeling more comfortable with the situation. It's good that she is an RN,she will get the help she needs seeing she works in a hospital.
Hope she learns more on Monday. Tell her she is in our thoughts and prayers
Take care your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
my mom has this Don. SHe has had two surgeries so far. The first one was 3 years ago and the last one was this october. The last one was 4 hours long and they removed part of her skull--like you had worried about.
The good news-- It HARDLY HURT!! She said it was practically pain free post op! Just the grogginess of anasthesia.
She feels much better and has better hearing and she was able to come out and help take care of ME on the west coast after my surgery within only a month of her own surgery.
She has to go back and get more surgery in a few months because they were not able to "get it all."
She is in Philly and went to a guy at UPENN I believe, if this is at all helpful. PM me if you want more info.
She said the doc described it like her ear makes pearls....it wraps tissue around something it finds iritating and *viola* you have a tumor.
I think your daughter will have relief and better life if she gets the surgery with a competent surgeon.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Hi Don, Thanks for coming back to post. It does sound like she is in a good postion, at at teaching hospital and a with a medical backgrouund.
Hope you are handling all of this ok Posts: 628 | From the south | Registered: Dec 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
just don, I do hope your daughter is getting some test results and will be on the mind soon.
Sending prayers your way.
Posts: 1366 | From Southeast | Registered: Sep 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Just heard from daughter again. She said she 'fired' her doc she was seeing on Monday,,,supposed to hear more about that later. (so lymies arent the ONLY ones to have doc issues)
She is waiting for more testing to be done Thursday. She is comfy with who is helping her NOW.
Last I heard IF they think it is growing its coming out,,,if not, it is going to stay put and be watched for a while.
I can tell all your good thoughts and prayers are helping HER and myself,,, with understanding and acceptance,,and thats all we could EVER ask for!!!! Time will tell.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Hey Don....I just now saw this. I'm sorry to hear about your daughter's plight. I'm so glad she is in good hands and pray everything will turn out great.
Hang in there!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
don, thanks for the latest update; glad to hear she took the bull by the horns and fired that dr. too!
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
so don, she takes after the old man is ready to be her own medical advocate! good for her!
i hear what you are saying about acceptance. it's the key, i think. life on life's terms is another way of putting it. let's hope you all have some grace thrown in to lessen the load your family is carrying. acceptance with a smidgeon of grace floating on top.
i remain just hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
UPDATE THURSDAY!!!
My daughter just called today to say she is NOT having it removed at present.
Get this, the ear doc from three years ago "ignored" it on an mri and 'instead' did his procedure he wanted to do,,,which resulted in her having now about 10% hearing in THAT ear.
Other docs have NOW said that IF he would have removed IT then it may have saved her hearing issues,,,NOW it wont return that function.
This ducky ear doc NOW wanted to have it removed ASAP, like be here Wednesday and we will slice and dice and yank it out!!
Problem with that is,,,NOBODY else, knowledgeable, can guarentee that this growth isnt 'connected' to the brain lining,,,which would be a terrible complication!!!
She talked about seeing an attorney about this,,,dunno myself,,,think that probably isnt wise,,,cause they all have their own opinions,,I am sure he had his reasons,,as poor as they MIGHT have been.
MY experience is with legal matters is,,,only one that ever wins are the attorneys. They drink the fine wine,,,you get left the 'pits'!! cuz I be --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Oh Don, That is maddening. Your daughter was able to figure out that an emergent procedure now was not medically necessary, good for her.
A lawsuit could be farily involved and time consuming. Your daughter seems to be making wise decisions and I trust she will be thoughtful about wether to proceed.
Thank you for keeping us updated. Posts: 628 | From the south | Registered: Dec 2005
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