Hi All. You have always been a great source of information, and I have a question regarding my 7 year old son, Sammy. He had a full decompression in August of 2012, when he was 6 years old. It took about 4 months for his pains to stop, and him to begin to feel better after the operation, but he did feel better for a while. However, in the last month, some of his symptoms (dizziness, leg pain, headaches) have started to recur. They are very intermittent at this point, but enough to raise my concerns.
I am wondering if anyone on here has had children who were decompressed, and who (initially) felt relief from their symptoms? How long did it take for the symptoms to recur, and how did they start again? Did you get support from your neurosurgeon that symptoms can recur? Our neurosurgeon insists that they don't. Did your child require reoperation?
Thank you in advance for your response. I really appreciate it.
Sorry to hear about your son's issues. I can't speak about children, but I have had two decompressions and a third surgery for a C2 laminectomy. After my first surgery, I had two months of much better health before my symptoms came back. A 2 month post op MRI revealed a CSF leak and tethering at C1. After my 2nd surgery, I felt great for three months and then my symptoms came back. A 2 month post op MRI showed possible tethering at C2 and a 4 month post op MRI showed tethering at C2 and a fluid build up at C2. I am 4 weeks post op today and I have still had symptoms (I actually have my post op meeting with my surgeon today).
Have you had a post op MRI? Is so, what did the radiologist report state and when was it done (before or after the symptoms started to come back)? If he has not had a post op MRI, I highly suggest you get one. From talking with other Chiarians, my belief is that symptoms do come and go. If I had a NS tell me that symptoms don't come back, I would probably be looking for a new NS. That is the hope, but I highly doubt that that is the reality... Sorry to be so negative, just trying to be honest.
Let me know if there is anything else I can do to help,
I am really sorry your son's symptoms have returned. In pediatric CM1 it is a possibility for symptoms to return. I will add some links to research I have read. Has your son had a post op MRI? Who is doing his follow up care?
I sent your Discussion out to the total Membership for additional input.
Please know we are here for you, your son and family. I wish I could be of more assistance.
So sorry to hear about your son!
I had my first decompression when I was 7. I had a rough 4-5 months recovery then began feeling better. I then returned to normal activities and development. I still had mild symptoms for 6 or so years. I continued to have head aches, blurred vision, and dizziness. Doctors always told my parents that I was fine. I had a second decompression and a C1 C2 laminectomy when I was 15 after a growth spurt. I felt great afterwards! I have only had mild symptoms sense. Hope this helps at all! Let me know if you have any other questions.
My son had his decompression at 13 months old and is now almost 9 with no issues since surgery and hoping it stays that way. He had severe symptoms including not being able to put full pressure on his legs. Before we knew about the Chiari we had a reverse walker on order for him. He has done great ever since surgery!
Firstly, has he ever been checked for tethered cord? My niece has undergone 2 decomps at 2 & 5 I believe. Then they discovered after return of symptoms that she has tethered cord. She will have that surgery in Sept. Symptoms can recur. Children's bodies are growing and ever changing. There are no guaranttes that the surgeries will be successful or lasting. The likelihood of needing more than one decompression surgery seems pretty likely from what I have been learning... Tracy may have some literature for you...
Thank you all for your replies! He had another "episode" this morning, so I called to schedule an appointment with Duke. In response to your questions, he has had a good postoperative MRI. His last one was in March, so surprisingly recent for what we are seeing. His last spinal MRI was in November of 2012, and it has occurred to me that something might be changing in his spinal cord, as his last scan was on the brain and (I believe, but would have to double check) it only went to C1 in his spine.
Tracy, I will review the articles you sent.... THANK YOU!!
Agree with all the above statements.
This is the specific setting in which I use a cine MRI. For the original surgery, a cine MRI is helpful but the primary decision to operate is based on patient's symptoms. Remember, even in the best circumstances, 10-20% of patients will fail to improve. A well decompressed Chiari with good CSF flow would tend to push you toward medical(neurological management). Lack of adequate posterior CSF flow would push you in the direction of re-operation. At 6 yeas old, the skull is >95% adult size and the surgical considerations are the same as for an adult.
I would suggest letting Duke know what images you ahve and specifically asking them if they feel the images are complete or whether a cine MRI of the CVJ(craniovertebral junction) and/or a spine MRI(you don't acquire a tethered cord but you could acquire a syrinx) would be helpful. It may save you an incomplete office visit.