Well, we have completed our round of second opinion doctors, met with the surgeon yesterday. He suggests surgery as he believes my sons 3 syrinx are what caused his mild scoliosis and we also found out that he has muscle wasting in his right leg. This doctor could not believe that his collegue dismissed the case and is sure that he did not look at my sons scans. Now it is up to us to decide on surgery....I am so torn! I would love to know if there are any 12/13 year old boys out there that had the surgery and wouldn't mind sharing their thoughts with my son? He is very upset, frustrated and mad at the moment and of course I am the mean one for even thinking about letting a doctor "cut him open". If we choose not to do surgery at this point they want MRI's every 3 months to monitor the syrinx. The thing that really worries me is the muscle wasting and what really scares me is all the stories I read seem to have the kids in severe pain for months after surgery and a lot seem to have new symptoms like leg pain appear. Aghhhhh....don't know what to do....any advice?????
Thank you all so much!
JoAnn
UPDATE: Decompression surgery will be done in early November. This is will take place after the MRI in early October and final consult with the NS. This is all pending no new signs or symptoms arise, if they do then surgery right away.
When we found out that Abbey had the syrinx surgery was not just an option for us anymore. Our NS said we could be risking permanent nerve damage if we waited and based on Abbey's list of symptoms the syrinx was causing problems already. Her syrinx was labeled as 'tiny' by the radiologist.
He was also very blunt when saying that surgery is NOT a cure. It is hoped to stop the progression of symptoms but there is no promise that it will. He stated that, for his patients, 80% see some type of improvement but 20% do not. There is always a chance of coming out of surgery with new symptoms or making the ones she already had worse.
Our NS absolutely supported the choice of surgery for Abbey but he also did not push it on us, or Abbey either. He did not paint of false picture of sunshine and rainbows but gave us factual answers to what he sees in his patients and their results after surgery.
Abbey was diagnosed on April 16 and she had surgery on June 11.
Thank you so much for your comments. My son will be having his decompression surgery in early November unless he presents with new symptoms. What your NS told you is pretty much the same that ours told us. At this point we are going to have the MRI done in early October then a final consult with the NS and then surgery in November. Our NS is on board with all of this as long as there is absolutely no signs of nerves being affected or other symptoms. He is not pushing us into it at all just like yours....he really went into details about other children he treats, the good and bad. The good thing is my son is now on board 100% to have it done. The mad and angry feelings have gone away and he knows this is for the best. I am very proud of him for coming to that conclusion on his own. I am still extremely nervous about the surgery and hope it is the right decision and no new symptoms come up, BUT at the same time I could never forgive myself if we did not do the surgery and the Syrinx caused nerve damage. Thank you again from the bottom of my heart and soul for sharing your thoughts, videos, photos, etc. We are forever grateful! I pray Abbey continues to recovers! Blessings, JoAnn
When Abbey was first told she cried. It's a hard thing for kids to be told and have to deal with. The children's hospitals are great at comforting kids and helping them through the surgery and recovery. I pushed really hard for Abbey to be at the children's hospital because at her age she could have gone to a 'regular' hospital for surgery.
If I remember right Abbey had a lot more symptoms from the syrinx than your son (headache, dizzy, tingle in arms/hands, 'clumsy') and she continued to gain new symptoms as the time went on.
Daniel will be having his surgery at Nemours A. I. Dupont children's hospital in DE. Yes, Abbey had more S/S from syrinx at this point then Daniel hoping he stays asymptomatic for now.
How is Abbey feeling today? I read that you were at the ER due to possible infection...was it just a allergic reaction?
I think that Abbey's incision looked like that because she stopped putting ice packs on it. After a night with ice packs it was back to looking like it did when she was released!