I have started this blog to help keep family memebers and friends updated on what is going on with Geneva.I am new to this so please bare with me.In January 2010 Geneva was diagnosed with mild Cerebral Palsey,and Chiari Malformation.This was diagnosed after a MRI was done due to issues Geneva was having with meeting her milestones and walking.I have to say the Cerebral palsey did not shock me,but I had no clue what Chiari was nor how it would affect our lives.Apparently Geneva was at 7mm when they found her Chiari so she was at the borderline to be sent to see a nuerosurgeon,but decided to watch her to determine if she needed to be seen or not.Following the MRI Geneva started her botox injections to help her maintain walking.The first 4 months worked perfect.Genevas Physical Therapist,Nuerologist and I were very happy.So when we started the 2nd series of botox we expected the same results.Unfortunately the results only lasted a couple weeks.At that point I was encouraged to take Geneva to see her Orthopedic Surgeon.During this visit it was made very clear that is was time for Geneva to meet with a Nuerosurgeon.I remeber thinking, for real?So we walked out of his office with a appointment in less than a months time.
We met with Dr.Di in July,by the time we had met him we had already undergone our 2nd MRI which showed Genevas Chiari was compressing and Dr.Di had already talked with Genevas nuerologist,and orthopedic surgeon and they had came to the conclusion that Geneva need to have the decompression surgery done for her Chiari as soon as possible.At our visit Dr.Di explained why they felt it was important and explained to me all the risk that were involved.He also reminded me that it would in no way help any of the Cerebral Palsey issues.He walked out telling me we would talk again before the surgery and left me with his nurse scheduling the surgery.The nurse explained to me that his schedule was pretty full and scheduled out till next March but since the dr wanted her in asap she put us in for October 8,2010.I have to say I was confused,that was the soonest??Apparently Chiari not being known well enough also leaves the issue of not having enough drs that know how to treat it.This really bothered me.
Since meeting with Dr.Di,Geneva has had issues that we believe are cause by the Chiari.She is having problems sleeping,staying up most nights and days screaming and crying in pain.Even taking me to get her more meds to help with the pain.It breaks my heart.She has had more issues begin with her eating.Geneva has always had issues gaining weight.But now she has become very limited on what she can or will eat.The ot workers has explained to me that her senses in her mouth are not awake and with that being a major factor she is not able to use her back teeth to chew,move the food with her tongue nor even bite through a fry with her front teeth.Another newer issue that really scares me is she recently started having pain in her back.Its not everyday but she starts screaming and holding her back.I did make her nuerosurgeon and nuerologist aware of everything.Nuerologist I got to see while Nuerosurgeon was off on vacation.The nuerologist feels that she needs another mri done of her back to check for teethered cord.So this was scheduled for October 1,2010.But when Nuerosurgeon heard what all was going on he wanted to move her surgery to September 14,2010.But when I explained the mri was scheduled and that we believed it would be best to get those answers first we were able to leave the surgery date for October 8,2010.
Now Nuerosurgeon is wanting Geneva seen by a developmental study dr through Cleveland Clinic before her surgery than after so we can know how much progress the surgery made.I would be ok with this but to me I believe there are enough people involved inGenevas life right now that can inform him of everything.Between her physical therapist,occupational therapist,speech pathologist,early intervention,and early start nurse.So right now I am waiting to hear back from him.Wish us luck!!
Prayers are with you during this difficult time <3
ReplyDeleteI know as a Mother that it is so hard to see your child in pain and not be able to do anything about it. I will pray for your strength and the strength of your little Geneva.
About
ReplyDeleteChiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature...