Any insight you can offer would be greatly appreciated: My daughter is 14 years old. She started complaining about dizziness and headaches last September. I took her to her primary care physician who just blew it off and said to give her some iron. Right after Christmas, she lost the feeling in her right hand and foot. She was diagnosed after an MRi. Her neurological symptoms are significant. She can no longer write, has trouble getting dressed and is very unsteady on her feet. She had Chiari Decompression on 1-25-13. Since the surgery she has developed tremors on the left side and sees flashes of light. They believe that the weight of the fluid in the syrinx is causing this and are evaluating her in April for surgery. I'm a single mother and this has turned our lives upside down. I am scared and overwhelmed with worry about her. I don't know what the surgery for the syrinx consists of or what kind of recovery time from it that I am looking at. Any advice? I am trying to figure out how much time I should plan on being off of work for that one.
hi, I'm 18 years old, I had my decompression on 6-25-12, are they talking about putting a shunt in? because that is very different from a normal decompression, if they put in a shunt that will allow the fluid from her skull and spinal cord to drain else where and it will help restore normal CFS flow. I know how hard this is on a single mother daughter pair. its just my mom and i. when we found out we had no idea what we were supposed to do, or how long it would take, all i can say is hang in there, take it slow. one day at a time, everyones recovery is different. it can take up to a year. i feel like i am still recovering and needing a lot of rest just over 8 months out. it takes time, its a lot for your body to handle
Hi, I have just finished reading your story and questions. My daughter is 15 and we are in a very similar situation. She is scheduled for surgery April 8. She is also dealing with syrinx. Our dr. Is going to drain the fluid and if necessary put in a shunt. The hope is he will not have to. I am told that once the chiari malformation is corrected that the syrinx usually goes away. She will be in the hospital 7 days and home another week or two. Assuming everything goes to plan you should be able to go back to work after that. Of course this is based off our situation but it sounds like you and I are in the same boat. Hope this helps and good luck!
Our dr. Said she would miss about 3 weeks of school. She will do homebound for that time and I think her first week back I will have her do half days.
My daughter is also very “clumsy”. Her NS said he could take away her headaches, nausea and clumsiness, other symptoms like the numbness in her hands and feet etc will have to be a wait and see but if those 3 main symptoms go away we can handle anything else.
At 6 weeks post-surgery, my daughter still is not back in school yet but I think she would be able to go back (without PE) but the school district has not provided any services so that she can return. She did not gain any feeling back in her right hand or foot so she is unable to hold a pen and control her hand enough to be able to write. They will need to provide some adaptive technology.and haven't followed through with the necessary steps. Today, the district nurse is coming to complete the assessment. We have yet to see a tutor even though I started the process prior to the surgery. So frustrating!
As far as her recovery, she is doing well but still has some headaches but not like she did prior to surgery. She is still uncoordinated but that's better than before. She still tires easily.After the surgery she has developed some new symptoms like tremors on her left side and some vision problems. The NS says that she has a lot of fluid pressing on nerves in the syrinx and that they will likely put a shunt in. We go next month for an MRI of her entire spine and then they will make the decision about the additional surgery. I certainly wish they would have drained it during the first surgery.