New here with brain tumor pain

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iloveoliver
Regular Member


Date Joined Jun 2012
Total Posts : 156
   Posted 6/14/2012 1:54 PM (GMT -6)   
Hi all,
 
My name is Maryann. I am 29 with a 2 1/2 yr old son. I was born with Neurofibromatosis type 2. I wasn't dignosed till age 9 when a very large tumor grew out of my skull (it ate the skull bone) and bulged out of my temple on the right side. Yes I almost died, but thanks to a wonderful hospital I am alive and well. Since then I have had 10 craniotomies (brain surgeries) and one on my neck/spine. Most recent brain surgery was on March 8 and then again on May 3rd. I am doing great and healing well! My spine is covered in tumors as well and may need surgery soon for some of those. A few are growing and pressing on nerve roots.
 
My pain started probably a few years ago. That's when it got bad, but has been at it's worse this past year. I have been on every pain medication under the sun. The best so far has been fentanyl. I am on the fentanyl patch 200mcg every 48 hours and also 252 Fentora 800mcg. This combo has given me my life back which is what my doctor wanted for me.
 
I love talking about chronic pain with other people and giving advice on medications so I am really looking forward to joining in with you guys.
 
xo

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/14/2012 3:15 PM (GMT -6)   
Welcome to the boards!

I am sorry for all that you have gone through....it sounds like you have a really great spirit and outlook on life despite going through so many surgeries and health issues...

We look forward to having you a part of our community...

I will just say in reference to your last paragraph...that we really don't give advice on medication to others as only a patient and Dr. can decide what is best for someone to take.

Obviously you have shared what works for you and am glad that you are being taken care of by your Dr..So what works for you may not work for others as everyone is so different with their pain issue, their metabolism, other medications, etc...

Anyway...wanted to welcome you here and I'm sure others will come along shortly to say hello!
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

iloveoliver
Regular Member


Date Joined Jun 2012
Total Posts : 156
   Posted 6/14/2012 3:51 PM (GMT -6)   
Thank you so much for the welcome. I have never felt sorry for myself or have asked "why me"? Ya know? I have seen a lot worse. Children dying of cancer and all sorts of horrible dieases so I try to stay positive as much as I can :) it's hard when you hurt everyday as i am sure you know, but what other choice do we have? I refuse to dwell in the negative.

Oh I would never recommend medication for someone. I just meant I like helping people who have questions about the meds they are already on. That's all :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 6/15/2012 6:18 PM (GMT -6)   
Hi Mary Ann and welcome to the chronic pain forum. Wow, after reading your story all I can say is you have really been through a lot at such a young age. So good to hear you say your recovery is coming along as it should. That means a lot without any glitches along the way. You have a wonderful outlook and attitude and that makes a huge difference. It can be real easy to slip in the mode of of why me, or I am not going to get any better than I am now type of thing is so destructive in so many ways. How we view our self is so important.

It sounds like you have a great team of drs caring for you. Its so important for people with chronic pain to have a dr in their corner that understands what it means when a person says I need quality life in order to function. Not everyone is so fortunate. I have a pain pump and a very good dr taking care of it and me.

Anyway, I wanted to pop on and tell you hello and welcome aboard....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

iloveoliver
Regular Member


Date Joined Jun 2012
Total Posts : 156
   Posted 6/17/2012 11:11 AM (GMT -6)   
Thanks Susie. Can I ask you a few questions about your pain pump? My doctor said I will need it one day :sigh:

Maryann

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 6/17/2012 11:17 AM (GMT -6)   
Maryann, I will be glad to answer any questions for you that I can. If you would like to email me, my email is listed in my profile and you have access to it. Just put in the heading you are from the forum so I will not delete your email, lol.

Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

iloveoliver
Regular Member


Date Joined Jun 2012
Total Posts : 156
   Posted 6/17/2012 10:34 PM (GMT -6)   
Susie I will defiantly email you. I know I can google most questions I have about the pain pump, but there's nothing like getting first hand advice and answers from someone who has one, right?! Thanks so much!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted Yesterday 8:57 AM (GMT -6)   
Maryann, I have a pump made by Medtronics and you really should visit their website, its awesome and very user friendly. But still ask me any question you would like. By going to www.Medtronics.com you can see first hand what the pumps look like and that sort of thing. ....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum
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