how old?

[Iris]

How old where your children when they had the first surgery? (that is if they had one ) isn´t it called primary surgery?

Iris
mom to Þórdís Alda(10) and Gréta Rún(4 months) LOBPI

[PeggyF]

my daughter was 12 months old for primary surgery (although, they told me that was an iffy age; it should have been done before that). Depending on the specialist you talk to and the extent of the injury, you would get varying timelines of anywhere b/w 3-9 months.

Peggy

[BIGJAVSMOM]

Iris,
Javier was 10 months old. Like Peggy said, it was a now or never thing at that age. The surgeons usually like to do it a little earlier. Primary can't be done after 18 months. ( I have been told by 3 docs)

Marlyn

[DeShawn]

Rain had primary surgery the day she turned 8 weeks old. We had no reason to wait so we decided to go ahead as soon as recommended. No regrets.

DeShawn

[tweetybirdkim]

unfortunately, my son was 3 days from his 5th birthday when he had his primary surgery, but we are still happy with the results

[brandonsmom]

My son was 7 months when he had Primary and 14 1/2 months when he had mod, the youngest at the time to have MOD QUAD, now they do it earlier !!!

[Iris]

Thank you all for your responses. I just came from my daughters doctor a few days ago, we are still waiting for another doctor who is coming to Iceland from London to take a look at our daughter in 3-4 weeks. But it´s very likely she has to have surgery, then we have to go to London to have it done. It scares me abit, I look at her and she seems so small to be going through such a major surgery. But if the doctor says its the best thing to do then of course we´ll do it in a heartbeat. I´m still hoping she wont need it though. Never give up hope

[Karen Hillyer]

Iris
here in the UK children are scheduled for a nerve graft surgery (as it is called over here)if it is indicated, between 4-6 months if possible.
Very few surgeries are carried out after about 9-10 months as the surgeons over here consider that they are not as effective when the child is older.
The hospital where I think she will have the surgery ( the Portland Hospital) in London is a good hospital and have been performing these surgeries for many years now.
If you do need to come to London, please e mail me at;
info@erbspalsygroup.com and I can offer as much assistance as I can and possibly I can arrange for a family of a child with opbi to pop into the hospital and visit with you if you wish.
kind thoughts
Karen

[TNT1999]

Hello, Iris. Nicole was 10 1/2 months when she had primary surgery, but that was considered very late. We were given false hope early on based on an inaccurate MRI with unclear interpretation from the neurologist. Then, we had insurance problems. I wish we would've had primary surgery much earlier. Hope this helps.

~Tina