It will be 3 months on Dec 6th since my son Titus had his Decompression surgery for CM Type 1. The main reason I decided to go forth with the surgery is because Titus was dignosed with severe Central Sleep Apnea. Of course he had severe headaches, vision problems, balance issues but the Central Sleep Apnea can be life threatening and we decided to do the surgery right away for the particular reason. Well here we are 3 months later and he still has the Central Sleep Apnea. On the positive side he has not complained of any headaches for quite sometime now! I am very dissapointed though because the main reason we did the surgery is for the CSA and it did not correct it. He has also been crying about going to school because all of the kids run faster than him and he cannot keep up with them because he can't run fast (due to his balance issues). Does this mean it did not correct his balance either or does that take some time for him to adjust to? Does anyone else have a child that has CSA along with CM1? I am trying to stay positive and give it time to work, however it feels like the surgery did not seem to correct anything. =( Any advise would be greatly appreciated!
Sadly I don't have any info on the sleep apnea or balance issues. I can say that my NS told me it could take at least a year to see the full effects of surgery so please don't give up hope!
Give it time. 3 months is still mid recovery phase and it can take 1-2 years to see final results. Improvement is some symptoms is a good sign in improvement in others. Remember, at least 20% of patients fail to improve with surgery so the central sleep apnea may be from another reason(just one we can't see anatomically).
It wold certainly be prudent to have a repeat MRI(most surgeons will repeat an MRI 3-6 months after surgery). Failure to improve could also be a reason to consider a CSF flow study >1 year after surgery. Presumably, Titus had the standard decompression and is continuing to follow with his surgeon. If he hasn't seen the surgeon in the recent past, let the surgeon know your concerns and ask for a repeat MRI, if it hasn;t yet been ordered. Unless something surprising is found, time will tell.
Thank you all so very much for your response! I guess going through all of these frustrations makes us impatiient as parents and of course we want our children to hurry up and get well! We just want what is best for them and don't stop to realize these things take time!
@ Beeba, I have thought of maybe taking him out of school and letting him start kinder next year, however, I do not want him to make him feel any different from other children. I don't know what to do at this point? I feel if I keep him in school it will make him stronger and he can overcome Chiari and be as normal as possible, but at the same time i do not want him to have to struggle and go through what he is facing now? He is having a really hard time and it breaks my heart to see him go through this!
Thank you Dr. Trumble it is a relief to know that it can take longer than 3 months to see results. I will look into getting an MRI done soon!
Also thank you Anglyn for your support and concern it's greatly appreciated!