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Kimberly's pain issues, when is enough, enough?
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kim'smom
Posted 2011-04-25 10:44 AM (#41038)
Subject: Kimberly's pain issues, when is enough, enough?



Regular

Posts: 72
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Location: Monroe City, MO
Well, I just thought I'd send out an update on how Kimberly is doing. We went to see Pain Management about 2 weeks ago. I was pretty happy with the appt. The anasthesiologist had talked with Kimberly's surgeon the day before and gotten a detailed account of what was going on. He then made sure that he would be available on short notice if we needed to see him, but we didn't. Then after talking to us a while and to Kimberly, they said that we were just as the edge of when the Neurontin should be kicking in and that they were very hopeful that it would. That hopefully it would be a short term medication to get us through until the pain is managable, not necessarily gone. They went over distraction tactics to use while moving Kimberly which have helped. And mainly they reminded us that this is a fairly new surgery and a normal has not really been defined yet. Plus with any surgery, there are a few people that have more problems with recovery even though there is nothing "wrong". Plus, Kimberly is such a little odd ball that finding her normal my be difficult. So here we are two weeks later. About a week ago it seemed we saw a slight improvement in her pain while moving her. But since it has platued again and maybe even went slightly down hill again. I am hoping to talk to them again today to give the docs an update and see what other options we have. I will ask there opinion if we should seek a second opinion. I just don't know. I hate to think she will always be in this much pain. Now again, for the most part she feels fine. It's just with transfering. Also, now we have to almost have her sitting sideways in her powerchair for her to be comfortable enough. that concerns me. She is also complaining more of one of her sides hurting, not just her back. ugh. Anyway, i will wait to see what answers pain managment can give me today and go from there.

mary
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Carmell
Posted 2011-04-25 11:40 PM (#41042 - in reply to #41038)
Subject: RE: Kimberly's pain issues, when is enough, enough?



Expert

Posts: 3243
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Location: Utah
Sorry about this!  I wish I had a good suggestion.  Remind me again - does she have pelvic attachments?  If so, I would have your VEPTR doc contact a more experienced VEPTR doc about the pelvic attachment sites.  I know of some kids who have had to have the rods taken off the pelvis and re-positioned on the lower part of the spine.  The pain was just too intense and did not resolve well.  Good luck!
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DStepp
Posted 2011-04-26 11:35 AM (#41043 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?


Regular

Posts: 78
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Omg I am so sorry Kims in so much pain!!! I would do what Carmell said to do have you doc call and get some opinions. My prayers are with you guys today!!! Danette
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kim'smom
Posted 2011-04-26 12:48 PM (#41044 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?



Regular

Posts: 72
2525
Location: Monroe City, MO
Thanks Carmell and Danette. Yes, both of Kimberly's rod's attach to her pelvic bones. I'm afraid that her spine or lower ribs won't have the stability needed to support the VEPTR. I have a call into her surgeon today, expecting to make an appt to see him. I will definitely bring this up and see what he has to say. It will be interesting to see how he handles the idea of me taking her somewhere else. If he gets defensive and rude about it, I know he's not the doc for us! I have a cousin that is a Orthopedic surgeon in San Antonio and have emailed our situtaition to him. He does not do pediatrics but has connections to those who do. The last time I emailed him (in the very beginning), he forwarded it to a doc there that does the VEPTR. I'm hoping he does that again! I just heard from her Para at school and Kimberly is very uncomfortable today, wanting to lay down by 830. school starts at 8. She was also in tears the whole time she was going to the restroom. ugh. Thanks for your support!

Mary
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Emily's Mom
Posted 2011-04-26 5:35 PM (#41046 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?


Expert

Posts: 1582
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Location: Greenbush, Minnesota
Oh my....it breaks my heart to hear that Kimberly is in such pain. I sure hope that something can be figured out soon.
Take care!
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Zoes Nana
Posted 2011-04-27 12:11 PM (#41047 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
SO SORRY TO HEAR THIS...AND I AGREE WITH CARMELL...
I WOULD TALK WITH THE SURGEON, AND WOULD BE BACK AT ONCE TO PAIN 'MANAGEMENT'...THIS IS PAIN NOW, AND NEEDS TO BE DEALT WITH NOW, WITH MEDICATION THAT WORK, AND UNTIL THIS CAN BE REMEDIED...I FEEL SO BAD...PLEASE KEEP US POSTED...
GOD BLESS..
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Diane17
Posted 2011-04-27 8:20 PM (#41053 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?



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Posts: 971
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Location: nixa mo
Hope you get a solution soon
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kchristensen
Posted 2011-05-02 1:05 PM (#41064 - in reply to #41038)
Subject: RE: Kimberly's pain issues, when is enough, enough?



Veteran

Posts: 167
1002525
Location: Phoenix, AZ
Hi Mary,
So sorry to hear about Kim's pain. I don't remember if you said she recently had an MRI for a tethered spinal cord. That can cause pain, discomfort, loss of bladder/bowel functions. Carter's was not seen on his first MRI, but later when a neuro surgeon looked at a more recent MRI, he found it. Also, my neice was just diagnosed with a tethered spinal cord, or a cyst in her cord. She was having a lot of trouble going to the bathroom.
Kristy
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Zoes Nana
Posted 2011-05-02 3:33 PM (#41069 - in reply to #41038)
Subject: Re: Kimberly's pain issues, when is enough, enough?



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HOPING AND PRAYING THAT TODAY IS A 'GOOD DAY' FOR KIMBERELY, AND THE PAIN IS LEAVING...
GOD BLESS...
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