Please help..spinal cord mass/chronic pain

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

missamelie
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/9/2009 2:50 AM (GMT -7)   
Hello all,
 
I had surgery over two  years ago bc I had a tumor/mass at T12.  A laminectomy was performed at T11, T12 and L1 to remove most of it.  Also, a shunt was inserted into my spinal cord to help the flow of fluid (so the mass would not reform).   i have been dealing with severe pain since this happened. I have NO idea where the pain is coming from...the laminectomy, the shunt, scar tissue, all of the above? ?   Has anyone experienced this and if so, any advice would be sooooo very greatly appreciated.  THANK  YOU for listening :) 

Morgoth
Regular Member


Date Joined May 2008
Total Posts : 177
   Posted 6/9/2009 5:20 AM (GMT -7)   
Alas we're no doctors. The only way to determine the exact origin is through medical examination. Could you provide a bit more info? What kind of pain (muscle pain, nerve damage, etc.), how does your body react to various positions, heat and cold, etc. Not that we'll come up with a miracle solution, no, but it might help us (ans certainly me as my back is the least of my concerns) to understand better what you have to deal with. Pain is very personal and indivisuals experience it differently, though sometimes practical tips might come in handy (I already had several good ones that improved my life).

What we most certainly can provide you with is a place to vent, fume, rage or just have a nice quiet chat, whatever you feel like. We all suffer and we understand. We can comfort you (well the others might, I'mvery bad at this) and you can talk about anything that bothers you. Often having a place where you can talk about your problems makes things better. It won't make the pain go away, but you'll realize you're not alone and you'll find people who understand what you go through (alas, again, not me, my back is pretty fine considering the circumstances).

BTW, welcome to the forum. We'll see you later and keep us posted.
To stand and be still at the Birkenhead Drill is a mighty bullet to shew.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/9/2009 6:51 AM (GMT -7)   
missamelie
First off I want to Welcome you to the HW Chronic Pain Forum, I am very sorry about what your experiencing, but you have found a good place to come, of course we can't cure you! But we can listen and support you, and let you know that you are not alone! Misery always seems to Love company and what better company to have than folks who know and can understand what you are feeling and going through, because we to are experiencing the same or similar things that you are! So we can definitely empathize with you! I don't think you will find an more caring compassionate group of people anywhere, than what we have right here on this forum. So Welcome to our family, and please feel free to joins us on all the topics posted and share with us as much about yourself as you feel comfortable with!

I have a question for you, Does it really matter what exactly is causing the pain, I mean it could be just one of the things you mentioned or all of them that is giving you so much pain. But the fact is you do have pain, I know well what it is like to have thorasic disc pain, I have a herniated and torn disc at T-12 and a bulging disc and bone spurs at T-8 and T-3. So I do have at least some idea of what you must be going through, but yours must definitely be much much worst! Are you currently being treated for Chronic Pain? If so is it by for PCP or do you go to a Pain Clinic and treated by a Pain Specialist? If not have you considered that as an alternative? I would definitely recommended you look into that if you have not already done so! I see a Pain Specialist monthly for evalation and refills of my pain meds! I can't not begin to tell you what a change it has made. I have a Doctor who not only knows how to treat pain, but also know how pain can affect ones life, and he actually care about you! So that would be my advice to you, if you are having Chronic Pain then by all means see some one that can help you get it under control! You do not need to suffer!
I do wish you only the Best! Good Luck to You!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


missamelie
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/9/2009 5:43 PM (GMT -7)   
Dear Whitebeart & Morgoth...THANK YOU for replying and welcoming me to the group.  It has taken for almost three years to even begin to accept my condition so finding a chronic pain support group was a big step for me.  A little about myself...I am 37 years old.  I was diagnosed with a spinal cord intramudallary tumor at T12 at the age of 34.  I had zero back pain to alarm to this (i didn't even know what 'back pain' was), the only thing that nodified my brain something was not right was my left foot.  Prior to my surgery I took up ballet dancing (and all types of dancing just for fun and exercise).  i danced 4-6 days a week after my work (i worked in accounting) and on weekends. i loved it!   but i started noticing my left foot would drag and also i could not flex my left foot in ballet class.  i thought it was just odd but would 'go away'   so one day i was running off to ballet and i tripped (over nothing)  then the next week i was doing a jump across the dance floor and when i came down on the left foot and felt nothing as my foot hit the floor (totally numb) and twisted my ankle terribly.  i went to my doctor and she did the reflex test on my knee and nothing. she did it at least 15 times and my leg / foot did not move once.  from here it was all so quick...mri showed the tumor, i was rushed into nuerosurgeon's office and basically told bc of it's position (literally inside my spinal cord) they could not bioposy but would need to go in for full resection bc we didn't know if cancer or not.  lucilky it was not cancer but more glial cells but we have no idea what formed the mass so they put a shunt in there to help delay it's return bc don't know what the cells will change to...i guess meaning cancerous...  so fast forward to present....not a day has gone by that my body does not feel totally different than prior to my surgery.  i remember how i used to feel and it's like someone switched my body with someone else if that makes sense?  and the thing is i know pain & always thought i handled it well....i had my gallbladder removed when i was 18 with four gallstones and then from mid 20's until now i have passed close to 40 kidney stones ranging in size from 2mm to 7mm.  but i would pass a hundred more kidney stones than face one hour of the pain my throacic back pain causes me.  i have tried everything from physical therapy, tens unit (this does help a tad sometimes), a back brace, pain med's (tramadol, soma, cymbalta, vicodin) but the vicodin gives me horrific nightmares so i try not to take too much.  my neurologist wants to try new pain med's but i get nervous about it bc of side effects but i am planning on seeing him soon to try something new....  i went to a pain specialist and the doctor (during the evaulation) was pressing on my back so hard that i could barely walk for two weeks afterwards.  he wanted to start with 3 injections and said it could go up to two dozen. the nurse took me to the side and told me to really, really think about it bc the risk of paralysis is there and with my condition of the mass in the cord it is riskier.   so i ran (lol!! i cannot run, but walked with my limp out of there as quick as possible).   i cannot dance anymore but do gentle stretches and some yoga.  also acupuncture helps.  but i need to go more often than i can afford it.   THANK YOU for listening!!!  i am so glad i found this site!!  Blessing to us all :) yeah

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/9/2009 11:15 PM (GMT -7)   
missamelie

And listen I will! as we all will!, and give you as much support as we can! I am also Glad you found us here at this forum!
Blessings to You missamelie!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


missamelie
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/10/2009 1:29 AM (GMT -7)   
Thank you White Beard!   It's a relief to know others feel when their bodies are out of balance.  I don't feel so alone which is wonderful!   
Have you been able to get your thoracic pain under any type of control?? if so, would you mind sharing what works for you?  have any specific med's helped?? i know this is an indvidual thing but it's nice to learn.  I had my yearly MRI last week so just waiting to see the neurologist.   I am more organized now than before.  I have my list of questions and concerns ready before I even go in (just in case i forget which tends to happen of course).  so one baby step at a time is all we can do.....all the best.  Thanks again for welcoming me to this group :-)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/10/2009 10:47 AM (GMT -7)   
:-)  
Welcome!
 
     Im very glad to meet you. Ive only been here for a short peroid of time, but the folks around here are ever so supportive AND always soemone who can brighten your day here. I think what I like the most is, no matter what your going through, someone has had a similar (sometimes funny) experience they can share. And here i go rambling...
 
*huggs*
dani
blush  
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/10/2009 3:39 PM (GMT -7)   
Hi missamelie,

I too want to welcome you to HW. I am so sorry to hear about your situation! I can't imagine how terrifying it must have been to loose sensation in your foot & then to learn that you had a spinal cord tumor! Wow! And then to top it all off, now you are left with CP. What a story! I am very glad that you found us, though. As White Beard & other have said, this is a wonderful site because we all understand what everyone here is going through, regardless of the nature of their pain or they type of pain they experience. Pain is universal & it affects us in so many different ways. For many of us, me included, this site has been a Godsend. I don't know what I'd do without my HW family! I'm glad that you have joined, as an addition to that family. Keep posting with us, through the good & the bad! There is no such thing as complaining here!

Skeye
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 12:08 AM (GMT -7)
There are a total of 2,735,769 posts in 301,331 threads.
View Active Threads


Who's Online
This forum has 151433 registered members. Please welcome our newest member, teenujohn.
176 Guest(s), 6 Registered Member(s) are currently online.  Details
Georgia Hunter, Job_the_Phoenix, holo100, Sheeks175, gilly2, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer