I’m sorry, I recently posted, but I wanted to reach out again to see if anyone else had input.
My 6 yo son is scheduled for decompression surgery May 3. We have had yearly MRIs for 4 years to follow his chiari, but neurology hadn’t really mentioned surgery. I had to switch doctors for insurance reasons and was referred to neurosurgery. Neurosurgery requested another mri and immediately called me and said they believed my son was at high risk for spinal injury and In need of surgery. His symptoms are minimal ( and I’ve never been sure they weren’t allergy va chiari) .but the neurosurgeon said he feels it’s necessary.
My question is, has anyone ever run into an instance when unnecessary surgery was offered?
Thank you.
Ask your son’s doctors what has changed or what they are seeing on MRI that warrants surgery. Ask about longitudinal but also horizontal views on imaging. Is what they are saying making sense to you? Keep in mind that symptoms tend not to resolve themselves when related to Chiari and can become permanent depending on what it they are. Surgery earlier gives better outcomes.
Research your doctor/hospital’s history of accusations/law suits and professional malpractice if you are concerned that they are being fraudulent. It is a big deal to accuse people of malpractice. Do you suspect the neurosurgeon is incompetent? The sub-occipital decompression is an easy one in the neuro-surgeon’s repertoire.
A number of years ago, I remember accusations floating around concerning the east coast/New York with “Chiari specialists” involved. However, flouting your concerns inappropriately can push a doctor to refuse your son as a client for fear of being sued.
You mention neurology then a switch to neurosurgeon. A neurologist is not capable of knowing if Chiari warrants surgery or not. That is a neurosurgeon. Neurologists tend to not even look at the actual MRI images but just refers to the radiologist’s notes (who is also not able to determine if the Chiari presentation is needing surgery or not).
Is this a legitimate concern of inappropriate medical care or are you scared for your son to have a big surgery? Sounds like you need more info to settle things down as you move forward with your son’s care.
Thanks. The surgeon is wonderful, I don’t doubt him. Just struggling with the idea of my son having surgery. I just wanted to see if anyone had any issues with surgeons suggesting surgery and finding out it wasn’t needed
In the end I think I’m just worried. I appreciate your input.
Yes, your concerns are very understandable. Perhaps a better thread to follow is ‘what have other parents done to get the supports and information that they need to go ahead and be a strong support and advocate for their child’. One pursues an active role in care and the other reflects fear and indecision. You can do it!
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Hello, I wanted to briefly share that I was told by one Neurologist that I had a syrinx and needed decompression surgery as soon as possible. I then went to Johns Hopkins and got a second opinion from a doctor with extensive Chiari experience. His opinion was drastically different. He said he did not see a syrinx and that he would not recommend surgery or even any further scans for my Chiari. I had started to schedule the surgery before seeing the second Dr (Jon Weingart at Johns Hopkins gave me the second diagnosis)… It was one of the happiest moments of my life and I highly recommend second opinions. Possibly even a third opinion as you are dealing with your child. I know this must be a scary time for you and I wish you the best and the best for your child on the Chiari journey.
Finding out that you did not need surgery must have been a big relief for you!
Hopefully you went on to symptom-free living.
Sorry, they were both neurosurgeons. A neurologist originally referred me to the first neurosurgeon. I was replying at 4am this morning I believe, sorry I wrote that out wrong! : )
Hi there
I was debilatated and in a wheelchairs but after decompressed surgery l have my 80% Quality Life Back…so have itvdone A S A P