Chiari Online Support Group

To fuse or not to fuse?

We are seriously considering a fusion for our 14 yr old after 2 failed decompressions have worsened her symptoms. She has significant headaches and nausea no other symptoms. A large unresolved syrinx that seems to be non symptomatic at present. Worried about making her worse but 2 chiari NS suggest it would help signficantly. Big decision to fuse a 14 year old. Any suggestions or input???

If it was my daughter with the symptoms that you listed I would check out a few other things before considering a fusion with the possibility of a new set of problems as the years proceed.

Motor-control therapy with a physical therapist who has studied Sullivan, Sahrmann, or with the smarterehab group. General neck strengthening is not the same as specificity of exercise and control. She is old enough that she should be able to be an active participant.

If she is not able to learn motor control exercises, the physical therapist should be able to look into alternatives - midline exercises, proprioception (does her brain know where her head and neck are?), vestibular, tactility, neurodynamics, graded motor imagery.

Without knowing why she is having headaches it is hard to say that a fusion would actually address that problem.

Good luck in finding solutions.

Thanks…I did some reading on the therapy you mentioned. We have done some different therapies but not specifically neck strengthening exercises so definitely something to look into. I am extremely worried about creating more issues so anything we can try is great!

Please note that plain neck strengthening exercises will not be helpful as myself and many fellow Chiarians can attest to. I am talking about motor-control exercises that help the brain relearn proper patterns of movement or stability and muscle recruitment. Careful interviewing of physical therapists is important!

My daughter was fused Occiput to C2 almost a year ago, after decompression surgery didn’t help her symptoms. She had upright MRI that showed retroflexed odontoid and hypermobility that was causing compression of her brain stem. It was a painful recovery, but she has been great since. She has gone from barely being able to function and having to drop out of school to living the normal life of a college junior. The surgery definitely helped her!

thanks for clarifying…I will talk to her pain team and see if they can recommend anyone…she does have RO, BI and query EDS so will be sure to be diligent.

My daughter also have RO as well as BI and some NS think she has instability while others do not see it. It is so incredibly hard to have opposing viewpoints as it makes a tough decision so much more tough. I am so happy to hear your daughter is feeling better. Do you mind my asking what her symptoms were and if you are comfortable what hospital you had surgery at? Thanks for your comment!

My daughter also had BI. The only doctor that really recognized the problem was Dr. Sunil Patel at USMC in Charleston. He is the neurosurgeon that did the fusion.

Her symptoms were constant headache all the time that worsened to unbearable often, nausea, extreme fatigue, ear pain, numbness/tinging in one arm, and she just generally felt awful all the time. Stayed in bed most of the time. It was very hard to watch.

My 14 yo son has had 2 failed decompression surgeries. He suffers everyday with headaches, tinnitus, dizziness, POTS & a vast array of other symptoms.
I would NEVER consent to any other surgery. If we could go back in time, we would’ve never consented to any of this surgery. We are trying to see as our son grows if his body can overcome some of this. The goal is to get him functional. We are just medically managing his condition now.
Unless you have a guarantee that the surgery will be successful, It may in fact cause another set of problems/ symptoms for your daughter. I’m so sorry you’re daughter is ill. It is so very difficult. Unfortunately our kids fall into that 5% where surgery doesn’t help & symptoms get worse. It’s just awful for our kids. My heart breaks everyday for my son. Hang in there. I know how difficult it is to see your child ill.

I absolutely hear you! I am terrified that surgery will make the situation even worse for my daughter. I would love to find a way to help her feel better that did not involve surgery and we are being incredibly diligent before deciding what to do and have traveled to a few chiari NS. The syrinx and its potential problems do make a complicated situation more complicated. I am sorry to hear your son is having so many problems, you are right it is awful to watch a child suffer and not be able to find relief for them. I really hope that you find a way to improve your sons quality of life!!

Thanks for the information. Sounds very similar to my daughter. It is very reassuring to hear that she has recovered well from the surgery and is feeling better!

I’m here because ive had an unsuccessful surgery and i am 7 months post op.
My neurosurgeon thinks i may have an instability and i will have flexion and extension test done with mri next week.
You havent mentioned that they have actually found an instability using imagery and so i’m thinking that it wouldn’t make sense to fuse unless you have clear evidence of an instability.
If you have clear evidence of an instability then it would absolutely make sense to fuse

We do have a flexion/extension MRI and it depends on who looks at it whether they see instability or not. There is also a brain stem kink and retroflexed odontoid which 2 NS feel would be corrected with fusion although 1 would remove odontoid and one wouldn’t. She has chairi 1.5 according to NS who use that term and also is unlucky enough to have cerebellar slump from second decompression. Everyone agrees she is very complex but no one agrees on what to do. Everything is grey…nothing black and white and hard for a parent to decide what to do when everyone has such differing points of view! I am sorry to hear that your surgery was not a success…I hope the flexion/extension MRI sheds some light on your circumstances and that you are able to find a solution to help you!

I had a basilar invagination and my during my operation they reduced the size of the odontoid. They didn’t open the dura.
I was told early ( before the op ) that it may be necessary to fuse at a later date.
Since then i have read that its common with invagination to have an instability.
Im very sorry for your daughter, im 38 and have lived a very full and active life. It really would be awful to have this as a child.
Since you have surgeons with conflicting opinions if you can seek further professional opinion that would be the most ideal to assist you in your decision.
Please keep us updated
Best Wishes

I would consider Dr. Greenfield for a second opinion at Weill Cornell Brain and Spine Center. I traveled 2800 miles to see him for my 12 year old son. His contact information is as follows:

525 E. 68th St.
New York, NY 10065

Telephone number is 212-â– â– â– â– â– â– â– â– .

I 2nd seeing dr greenfield! He specializes in all this. I had RO and BI and when I had decompression only it’s created CCI. They never addressed my brainstem being compressed and if that’s what is going on with your daughter it will benefit her greatly. Recovery was easier this time too bc Greenfield knows what he is doing with this and she is young so she will heal fast. Until those thugs are Properly addressed I’m afraid it will continue to get worse. Brainstem compression is serious and you don’t want permanent damage. Greenfield and his team is phenomenal and will take great care of you both! Look up Chiari Care, he has lecture videos at csfinfo website and check out DURAble Brain foundation for help with travel and Info on all sorts of good stuff.

Thanks it is great to hear good feedback as we have been considering going to him. I hope your son is doing well!

THANKS!! Sorry for my delay in responding…we have had a rough time and I have been distracted. This is really reassuring as we are considering Dr Greenfield and I love hearing great feedback. Also the information for funding is huge and much appreciated. Happy New Year

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