Phaeochromocytoma

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Fae
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/1/2009 6:23 PM (GMT -7)   
Hi
Does anyone have any experiences, advice or knowledge on Phaeochromocytomas? I recently underwent a spontaneous Total Colectomy, removal of large bowel and appendix after an admission to hospital with 'tummy ache' !!
Massive shock ! Very ill and over 2 months in hospital.....( still not recovered 5 months on ) but...while scanning my tummy, they found this Adrenal tumour and boy is it wrecking my life !
It raises my BP to ridiculous levels, without warning and I can just drop to the floor. And now theyve medicated this my BP can fall into my boots and again, I just drop. I have headaches, bad ones, Palpitations, I sweat, whatever the weather, I go a pale creamy colour, shake, tremours, feel sick and vommit...and this is all the time..
 I am earmarked for surgery, when they can calm the BP and heart racing down a bit. Its an 8cm tumour so possibly their for some time. ( Tummys so badly cut up from surgery, the promised 'keyhole' is out of the window now)
I have never in my life been so frightened ... never. I have been thinking the worst things. I have 2 sons and I darent talk to them about it. I have never felt so unwell, with the Ileostomoy included. I cant walk far, cannot stand, Im constantly exhausted. Can anyone please share if they have any experience of a Phaeochromocytoma. Its a very rare tumour and therefore, hard to find life experiences about.
Thankyou friends
Fae x

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/2/2009 6:16 AM (GMT -7)   
Hey Fae,

I am wondering if you posted in the wrong forum. Are you suffering with anxiety/panic? If you wanted your post in another forum, just let me know which one and I will move it for you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Fae
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/2/2009 10:33 AM (GMT -7)   
Hello,
I looked and looked for a title heading for what I was asking but only Anxiety matched. Phaeochromocytomas promote great anxiety problems and I couldnt find where else to ask my question
Id be really grateful if you could redirect my question, yes.
Thankyou
Fae x

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/2/2009 11:18 AM (GMT -7)   
Hello Fae and welcome to HealingWell and the A & P  forum.
 
Your right Phaeochromocytoma promotes great anxiety problems as it is truly a frigthening dx.
 
I think Gail thought perhaps you were looking for support re surgery.  You posted " I have never felt so unwell, with the Ileostomoy included."
 
We do have an Ostomies Forum as well.  If anxiety is where you want to be you are sure welcome here.
We have many wonderful members who have anxiety and they are always willing to share their issues and what they do to help themselves through difficult times.
 
I don't believe we have ever had anyone with Phaeochromocytoma but no matter what is causing your anxiety to be a problem we are here to support you.
 
Have you talked with a therapist yet as you have a lot on your plate?
 
Also wondering how old your boys are? 
Re your surgery, the best preparation for you is knowledge...ask your doctor to explain the procedure, and what happens after. Also perhaps you would benefit from a medication that would help you feel less anxious.
 
I understand the "fear factor"; do whatever you can to distract yourself, read, watch a movie, clean out a closet.  I know you may have some limitations due to your first surgery but do try to keep busy and do not try to guess what is going to happen in the future, stay in the moment. 
 

Never lose hope in dealing with your fears and anxiety. Notice your feelings, figure out what's real, ask 'so what?, make it bigger than life and  walk through it.

Count on us to help you through and know we do care for all of our great members.

I wish you peace,

Kitt


 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


Fae
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/2/2009 11:34 AM (GMT -7)   
Hi
The tumour creates uncontrollable anxiety along with many other issues. I didnt know where to post my question. Id just like to know if anyone has experience with Phaeochromocytomas...has one, or has had one and could help me a little..
Thankyou
Fae x

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/2/2009 12:38 PM (GMT -7)   
Fae,
 
I sure hope someone has had experience. The forum is open 24/7 so we have people from all over the world so hopefully someone will pop in that has some experience.
 
Keep the faith my new friend.
 
Kitt

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/2/2009 4:34 PM (GMT -7)   

Hello Fae,

I asked some of the other moderators and they admitted your disorder is very rare but came up with a couple of site that may help you:

Just click on links

http://www.pheochromocytoma.org/sys-tmpl/door/

pheochromocytomasupportboard.yuku.com/forums/1/t/Announcements-and-Board-Rules.html

Perhaps someone will still come forward.
 
Lots of hugs to you,
 
Kitt
 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


Fae
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/4/2009 2:15 PM (GMT -7)   
Hello,
You're so kind for asking and thankyou for those addresses. I will look right away
Thanks again
Fae x

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/4/2009 2:46 PM (GMT -7)   

Fae3,

We are all here to support you through this high anxiety time in your life.  You may email me anytime you like if there is something I can do for you. 

I feel so bad to know you are going through all of this.

Gentle Hugs

Kitt

 


 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind

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