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DBS and pregnancy

 My foot has now been curled in for nearly a month.  My physical therapist cant really get it straight.  My ob sends me to my neurologist, who sends me to PT, who sends me back to the neurologist.  Im not sure if no one knows what to do or if no one wants to deal with it because Im pregnant. 
My neurologist has told me that the only real option is to admit me to the hospital for a few days and try changing the DBS settings.  I would have to be in the hospital so thet could monitor me and make sure the baby was okay.  The biggest risk is that the dystonia could move into my abdominal muscles.  The chances of this happening seems slim to me since Ive never really had symptoms there before but I dont know.  The risks are very unclear because there hasn't been enough people in this situation.  I would think if the symptoms moved into my abdomen, we could change the settings back to where they are now.  I am not sure what to do because my foot is causing me to have knee and hip pain from the twisting when I walk.  I have 17 weeks until my due date and I dont know if I can walk on the side of my foot for that long but I also do not want any harm to my baby.  If there is any chance this could hurt him, I will not do it. 

Comments

  1. bionicrunnerOctober 10, 2012 at 1:47 PM

    Mandi-
    Sounds like you're being sent in circles. I am sure it is a combination of your doctors not knowing what to do as well as exercising extreme caution because you are pregnant. I have a few thoughts.

    As a "veteran DBS-er", I believe that your neurologist is giving you good advice about admitting you to the hospital if you want to try changing your iPG settings. I understand that you have never had dystonia in your abdomen before; however, just a minor tweak to a setting in your iPG could trigger something in your basal ganglia that could adversally affect your abdomen. Obviously you want to avoid this. DBS is as much of an art as it is a science, so every tiny change has to be carefully monitored - especially if you are pregnant.

    I know this is rough, but can you try to stay off your feet and do relaxing things? Take baths. Read. Watch engaging movies. Have friends/family someone help out with Hailey. I sometimes need a lot of help even without being pregnanat or having kids. I can't imagine the stress you must be going through (even good stress is bad for dystonia).

    Also, please read this link from the National Institutes of Health. It is a study that in a nutshell, says that Botox A is safe during pregnancy. Heck, print it out and show it to your neurologist! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117417/

    Good Luck, again!

    Nicole

    ReplyDelete
  2. asleeperOctober 10, 2012 at 8:29 PM

    Thank you for your advice! I feel like it is a big decision to make. I try to stay off my feet but it's nearly impossible with a 2 year old!! The whole thing is just very tough but I appreciate your input and I will read that article and discuss it with my neurologist!!
    Thanks again hope you're doing well!

    ReplyDelete
  3. eoe¿December 6, 2012 at 2:46 PM

    were you on medications during your pregnancy?

    ReplyDelete
  4. asleeperMarch 15, 2013 at 11:02 AM

    No, I didnt take anything during either pregnancy.

    ReplyDelete

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