Post -Surgery.. pain

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Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 12/5/2007 7:27 AM (GMT -7)   
Wow.... It has been SSSOOOO long...
 
This site got me through a lot of decisions.. made friends...learned alot
 
Quick update... Surgery...16 months ago... L temp lobe resection... NO SEIZURES since...I found my old calendars, and was up too.. about 5 complex a week,...on average... I had a cavernous malformation
 
Finally took the plunge after 20 years... 
 
Now... I have to admit... I am still in massive pain... not my brain.. the rest of my body...
 
I am wondering if anybody out there knows about NSF ??? I am  wondering if it is from the after affects of contrast ??
 
I had probably 5 mri, and Cat scans since my surgery... With contrast... I am having a hard time moving...I have a hard time sitting... at computer... sitting period... my back is killing me... neck is killing me... I dont understand... I had none of these problems before SURGERY...
 
I feel worse now than before surgery... I take more meds now than I did when I was having Seizures.... That was my goal to be med free... NOT....
 
Has anyone been through this... after surgery untolerable... body and muscle pain ??? I dont get it... Been to every specialist.. Rheumo, Neuro... dont know who to see anymore.....
 
Any info.. Would be great...
Thanks
 
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
Successful surgery August 06
Weening off meds...
Looking for answers on pain in head after Surgery !!!
Going off seizure meds, OD on tylenol and Motrin !!!
Help !!!!!


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 12/6/2007 5:32 AM (GMT -7)   

I might be having a blonde moment here so please excuse me when I ask... what is NSF? (Surely I cant be the only one thinking this! lol) If there is a substancial amount of pain post-op that was not there before and it has been 16 months then I would be concerned. Have your scans come back clear? The only place you had surgery was the temporal lobe right? They didnt touch the parietal/pre frontal cortex at all did they? The only thing that springs to mind is if the motor cortex has been affected in some way... but I would expect that to show on a CAT/MRI.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Co-Moderator - Depression Forum
 
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Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 12/6/2007 8:11 AM (GMT -7)   
 
NSF.... Is : Nepronic Systemic Fibrosis..... I am not in the med field....
 
I have read, alot of crazy things about this fairly new dx... that people know about anyway..... Contrast companies are actully getting sued..
 
Optimark.. for one... the makers of dye, gadolidium.... that is given for cts and mri's.....
 
the big thing is... if u get a mri or ct... with contrast.. a paper must be signed stating you have no known kidney diseases.. and others..... Contrast can cause problems
 
NSF .. I think is known to cause pain... in back.. neck ,,, joints.... I dont know all the facts.... I am just driving myself nuts wondering... Using so much contrast in a year... makes me wonder ?? Is this what is causing all this pain......?
 
Been for MRI... through neuro... said... I have herniated discs.. like everyone else,,, nothing new.... 
 
He does not understand where all this pain is coming from.... I dont understand either....
 
I had a really bad issue right after my temp lobe surgery.. I could actually feel the plates, moving under my skin.. AND THE screws were literally popping out of my skin... I fought for 7 months to get them removed... You know what ... since then... I no longer have pain from plates... all gone..... I knew the screws were not placed in correctly... otherwise... it should not have caused so much problems............
 
Not sure where my motor cortex is located.... I would have to find my surgery report... the location of my cavernous malformation was in the l temp lobe... it affects my language... verbal comprehension.....]
 
I dont remember if it affected motor skills...
 
I had the WADA done... the 7 day subdural elecrode testing... I know my motor skills were checked.. dont recall.. the area... hmmm that is a thing to check.....
 
I honestly dont think all the pain in my body was caused by my first surgery... ... the neck pain.. and back started after the removal of the hardware was done...
 
By then I had at least 5 contrast tests... So I am wondering if all my problems are the aftermath of putting dye in my body...
3 neuros suggested I go on Neurontin for pain....
 
Well duh... have they read about the BIG lawsuit....   It is not legal to administer nuerontin for pain... It is a Seizure med... ad on...... 
 
I also refused Neurontin... as I was on that for seizures several years ago... and had bad affects...... Doctors need to do their homework.....
 
I have to look into partiel/ frontal cortex.... I know that word... maybe I read it on my report.... I guess I better do my homework... Could that be the motor skills area/....
 
I know they messed with my emotion area... I need to do some research on this..... thanks for the input..... Sitting too long... better go....
 
 
 
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
Successful surgery August 06
Weening off meds...
Looking for answers on pain in head after Surgery !!!
Going off seizure meds, OD on tylenol and Motrin !!!
Help !!!!!


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 12/6/2007 4:37 PM (GMT -7)   

If this helps with your homework...

Imagine you are looking at the brain from the side. The front piece is the FRONTAL LOBE (No surprises there) and the back piece is the OCCIPITAL LOBE (Concerning Vision). The piece thats left in the middle... divide it in half horizontally. The bottom piece is the TEMPORAL LOBE (Concerning Language) and the top piece is the PARIETAL LOBE (Concerning sensitivity). The PRIMARY MOTOR CORTEX is right on the border between the frontal lobe and the parietal lobe. As for emotion, you need to look at inner brain structures for that one. The most common one to be associated with emotion is the BASAL GANGLIA although there are others. The basal ganglia can be found behind the temporal lobe.

I have put the important words in caps and bold to help you pick them out

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 12/6/2007 5:17 PM (GMT -7)   
Thank you for sharing your Smarts !!!  I really have alot of homework to do  yeah ...
 
My goals are to feel good !! I am not looking to start trouble with docs... I just want to find my problems and fix them..
So far,,,, I will say... I am not " spaceing out"  16 months and I feel extremely lucky..... I want to get a job.. hopefully in a local hosp..  or even volunteer...So I can show... some neuro patients my UGLY scar... And smile with them...... cool
I want others to know... "Life is good"   sometimes very hard... but good.....
 
thanks again... I know "people" sometimes know more than some " Docs" and always go with your gut....
 
I wish I had enough brain ... LOL ....to get into medical school !!! he he he...... I find it really interesting...
 
Thanks... I will let yas know if I find anything :-)
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
Successful surgery August 06
Weening off meds...
Looking for answers on pain in head after Surgery !!!
Going off seizure meds, OD on tylenol and Motrin !!!
Help !!!!!


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted Yesterday 3:58 PM (GMT -7)   

lol... I would be disappointed if I couldnt tell you those sorts of things! I am in my 3rd year of a Psychology degree so that sort of stuff is basic! (It sounds impressive though doesnt it! tongue )

I am interested to hear what you find out. I know you are not looking to start a fight with the doctors... they want to help you as well. As far as I remember you are both fighting on the same side!?

Let us know how you get on

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

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