So I had an MRI the other week and they finally called me with the results. Looks like a I have a rather large brain tumor that is more than likely what has been causing my chronic migraines. Needless to say, I'm pretty flipping scared....
I go in to the docs tomorrow for more blood tests and I see my neurologist on the 26th to figure out the plan of how we are going to go about getting it removed and what not.
So just send positive thoughts my way please? I need them pretty bad right now.....
|
|
Celiac.com Sponsor: |
86 replies to this topic
#1
kristenloeh
-
- Advanced Members
-
- 140 posts
Advanced Community Member
Posted 14 December 2012 - 12:18 AM
Diagnosed Celiac 04.2012
Gluten-Free 04.2012
Diagnosed Pituitary Prolactinoma 12.2012
Low Cortisol/Possible Addison's Disease 02.2013
Maybe one day I will feel "normal" again. <3
Ads By Google: |
#2
mushroom
-
- Moderators
-
- 9,448 posts
Mushroom
Posted 14 December 2012 - 01:54 AM
Oh honeybun, what a trauma for you. Of course you're flipping scared, but it is probably benign. I know you can't help worrying, but oftentimes they are. Will definitely keep my fingers crossed for you. Sending oodles of positive thoughts, and some warm {{{{{HUGS}}}} and {{{{cuddlesl}}}} your way.
Hang in there and do continue to let us know what is happening with you.
Hang in there and do continue to let us know what is happening with you.
Neroli
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
------------
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
------------
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
#3
IrishHeart
-
- Moderators
-
- 8,014 posts
Warrior Princess
Posted 14 December 2012 - 07:16 AM
Sweetie.
Like Shroomie, I am sending all good vibes, encouraging thoughts, prayers and positive energy to you.
I am sure you are scared, hon and I do not blame you one bit, but try to think positive thoughts about your
prognosis and recovery.
I send ((big warm hugs)) to you.
Keep us posted.
My best to you, IH
Like Shroomie, I am sending all good vibes, encouraging thoughts, prayers and positive energy to you.
I am sure you are scared, hon and I do not blame you one bit, but try to think positive thoughts about your
prognosis and recovery.
I send ((big warm hugs)) to you.
Keep us posted.
My best to you, IH
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. 
Celiac.com - Celiac Disease Board Moderator
#4
Celiac Mindwarp
-
- Moderators
-
- 1,014 posts
Advanced Community Member
Posted 14 December 2012 - 09:10 AM
Hi
I will certainly be sending positive thoughts and hugs your way.
Of course it is scary, but I'll have fingers crossed for you and the neuro to make the BEST plan to get you healthy again.
Let us know how you are getting on
Many many good wishes
Mw x
I will certainly be sending positive thoughts and hugs your way.
Of course it is scary, but I'll have fingers crossed for you and the neuro to make the BEST plan to get you healthy again.
Let us know how you are getting on
Many many good wishes
Mw x
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein 
Celiac.com - Celiac Disease Board Moderator
#5
kareng
-
- Moderators
-
- 10,470 posts
Something seems a bit fishy!
Posted 14 December 2012 - 09:46 AM
On No! Sending some postive thoughts your way. Keep us posted if you feel up to it?
Celiac.com - Celiac Disease Board Moderator
"I believe that if life gives you lemons, you should make lemonade... And try to find somebody whose life has given them vodka, and have a party" - Ron White
""I like the cover," he said. "Don't Panic. It's the first helpful or intelligible thing anybody's said to me all day."
― Douglas Adams, The Hitchhiker's Guide to the Galaxy
“Life may not be the party that we hoped for…But while we’re here, we should dance.”
#6
GFinDC
-
- Advanced Members
-
- 3,581 posts
A little farting never hurt anybody... :-).
Posted 14 December 2012 - 12:19 PM
Prayers and hugs sent. But a few more hugs are not bad right? (((((((hugs))))))). My sister had a I think they called it gamma knife or some such thing. And a co-worker at my old job had some kind of brain surgery. People do recover from such things.
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
#7
Jestgar
-
- Advanced Members
-
- 9,724 posts
Posted 14 December 2012 - 12:25 PM
Very scary honey. 
Hugs and strong thoughts heading your way.
Hugs and strong thoughts heading your way.
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson
My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant
Leap, and the net will appear.
- James Watson
My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant
Leap, and the net will appear.
#8
GottaSki
-
- Moderators
-
- 3,222 posts
"Migratory flight complete."
Posted 14 December 2012 - 03:09 PM
Oh Sweetie
HUGE Hugs heading there right now!
Prayers today and in the coming days for strength and healing.
HUGE Hugs heading there right now!
Prayers today and in the coming days for strength and healing.
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe 
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#9
kristenloeh
-
- Advanced Members
-
- 140 posts
Advanced Community Member
Posted 14 December 2012 - 08:29 PM
Thank you all, it's always nice to know there are people out there who care. Once I know more after the 26th I will let you all know <3
Diagnosed Celiac 04.2012
Gluten-Free 04.2012
Diagnosed Pituitary Prolactinoma 12.2012
Low Cortisol/Possible Addison's Disease 02.2013
Maybe one day I will feel "normal" again. <3
#10
shadowicewolf
-
- Advanced Members
-
- 2,267 posts
Advanced Community Member
Posted 14 December 2012 - 08:30 PM
That has to be hard.
On one hand, you know whats been causing it, yet on the other hand....
Hope ya get better
On one hand, you know whats been causing it, yet on the other hand....
Hope ya get better
ADHD
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
#11
kristenloeh
-
- Advanced Members
-
- 140 posts
Advanced Community Member
Posted 18 December 2012 - 05:14 PM
Thanks all, I've been trying to rest a lot because it's been making me rather sick lately.
Diagnosed Celiac 04.2012
Gluten-Free 04.2012
Diagnosed Pituitary Prolactinoma 12.2012
Low Cortisol/Possible Addison's Disease 02.2013
Maybe one day I will feel "normal" again. <3
#12
kristenloeh
-
- Advanced Members
-
- 140 posts
Advanced Community Member
Posted 23 December 2012 - 05:21 AM
We have a bit more information. The tumor is NOT cancerous. It's about the size of my pituitary gland and it is in the back of the gland, so it's not messing with my optic or my sinuses, which is a good thing, but in a way, a bit bitter sweet, since now instead of the surgery option being easy and through my nose, they will have to go in through my skull more than likely. We do not know my treatment methods yet, but it's more than likely going to be brain surgery.
So, at least that's a bit of good news before Xmas
So, at least that's a bit of good news before Xmas
Diagnosed Celiac 04.2012
Gluten-Free 04.2012
Diagnosed Pituitary Prolactinoma 12.2012
Low Cortisol/Possible Addison's Disease 02.2013
Maybe one day I will feel "normal" again. <3
#13
IrishHeart
-
- Moderators
-
- 8,014 posts
Warrior Princess
Posted 23 December 2012 - 06:10 AM
This is good news! "Not cancer" is always good news.
I am sorry you have to be operated on( as the other option is less invasive), but if it gives you any encouragement at all, my (then) 82 year old Mom had brain surgery for a dangerous subdural hematoma. She had a few weeks of a bitchin shaved head hairdo that we threatened to dye
purple ( we were this close to getting her to go for it, too!)
and she did have to do some required post-op therapy to make sure her coordination was not affected (it wasn't)
but she recovered rather quickly.
You're young and strong and I bet your doctors think your prognosis is excellent, yes?
I am sure this makes you still nervous, of course (all surgeries are scary. I've had 8 in my lifetime, so I understand this apprehension) but you're probably feeling relieved and optimistic, too.
I send you all good wishes and prayers for a quick and total recovery.
Please keep us posted! Merry Christmas, hon.
I am sorry you have to be operated on( as the other option is less invasive), but if it gives you any encouragement at all, my (then) 82 year old Mom had brain surgery for a dangerous subdural hematoma. She had a few weeks of a bitchin shaved head hairdo that we threatened to dye
purple ( we were this close to getting her to go for it, too!)
and she did have to do some required post-op therapy to make sure her coordination was not affected (it wasn't)
but she recovered rather quickly.
You're young and strong and I bet your doctors think your prognosis is excellent, yes?
I am sure this makes you still nervous, of course (all surgeries are scary. I've had 8 in my lifetime, so I understand this apprehension) but you're probably feeling relieved and optimistic, too.
I send you all good wishes and prayers for a quick and total recovery.
Please keep us posted! Merry Christmas, hon.
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win.
Celiac.com - Celiac Disease Board Moderator
#14
GottaSki
-
- Moderators
-
- 3,222 posts
"Migratory flight complete."
Posted 23 December 2012 - 08:27 AM
Ditto - I'd say that is excellent news - not dismissing a very serious surgery - just very good to hear it is not cancer.
Merry Chrristmas to you - thank you for updating us
Merry Chrristmas to you - thank you for updating us
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#15
Celiac Mindwarp
-
- Moderators
-
- 1,014 posts
Advanced Community Member
Posted 23 December 2012 - 09:08 AM
Really pleased to hear your good news, not having cancer must be a relief.
The surgery you described and location of the tumor sounds manageable. All the very best for Christmas and for the start of your healing.
Mw x
The surgery you described and location of the tumor sounds manageable. All the very best for Christmas and for the start of your healing.
Mw x
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
Celiac.com - Celiac Disease Board Moderator
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users
