Special Needs

Surgery...Sigh

After many hours..days..and weeks of trying to figure out the RIGHT thing to do about Ps back surgery and seeing a local doc the week prior saying she had no clinical or MRI signs of re-tethering.  I had NO gut instinct on what to do, After this past year and over 10 docs not being able to agree on WHAT was wrong with her.  The doc in Michigan was so amazing and I just tried to find the faith to trust her.  So, we drove 12 hours and her surgery was last Friday.  She ended up having scar tissue intertwined with her bowel/bladder nerves at S1-S2, scar tissue attached to her dura, and she was rethered from her spinal cord to her tumor and scar tissue. The doc was able to remove all of her lipoma and the scar tissue.  

I was absolutely hysterical when she told me what she had found, like straight up crazy train hysterical.  

Anyways, she is recovering as well as can be expected but she is..soooo angry.  She threw food at me in a rest area, tried to hit me with her walker, I don't know how to deal with the behavioral aspects of this.  She has always been more moody based on how many appointments/procedures we had done recently.  But this, is a whole new kind of anger.  I'm going to call the behavior management part of our plan but I know that takes a lot of time..any ideas in the mean time to help her deal?
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Surgery...Sigh

  • Oh my gosh! I don't have advice, but poor P! What's the prognosis? Will the pain go away/be reduced? I'm so sorry, and I hope she starts to feel better soon!
  • I am so glad you trusted this doctor.  Sounds like she really knows her stuff and hopefully P will be much more comfortable.

    Hopefully as she fully recovers she will start to relax.  
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • Loading the player...
  • Wow... just, wow.  Thank goodness you went with the doctor in Michigan.  But, I am so sorry about all that was found and P's difficulties after surgery.  

    I have no words of wisdom to offer you.  Just virtual hugs.
               image      image      image
    image
This discussion has been closed.
Choose Another Board
Search Boards
"
"