Chiari Online Support Group

Neurosurgeon Visit - Update - Left in Silent Tears


#1

I’m tired. I literally left the neurosurgeons eyes silently crying with watery eyes, and completely hid it from my own mother.

Neurosurgeon did not deny the “mild Chiari” that I have, did not deny that my cerebellum is longer than normal, or the movement of the tonsils. On top of this says my neck is bending farther forward and downward more than it should, so he wants testing and imaging on the neck. He also wants to look for a “tethering” in my spine, so he wants a full MRI of my full spine and all angles of my spine, and also likely a spinal tap. Oh, and then tells my mother and I, “I specialize in Pediatric Chiari, thats why all neurosurgeons send adults and kids to me to be treated for this” - that was not comforting or reassuring at all.

I may not be an MD, but I do know MD’s and I know how to find accurate medical research and medical information. “Tethering” in my spine doesn’t explain the over dozen symptoms I have, only symptoms I have that could match it are leg pain and chronic back pain, the rest of the symptoms are all Chiari related. So neurosurgeon wants after testing a high chance for neck and back surgery to fix those issues, but uh, it won’t fix the Chiari, and whats going on with my brain and the other dozen symptoms I have.

Is it me… or do just any doctors of any specialty not care anymore? Do they not listen? I was polite, mature, had the records, the imaging, I typed up every symptoms I have, all the details, how I’m affected… and nope… just say likely another year or two of testing, and then likely neck and back surgery, even though the tethering doesn’t explain my symptoms.

I don’t know if I should just let my symptoms worsen and live like this the rest of my life and never be able to work let alone have a social life again… or keep fighting and going from doctor to doctor…

I don’t want to end up paralyzed or in a wheel chair… this just isn’t right. I’m not against testing for my spine and neck, that’s fine, but to completely ignore the dozen other symptoms and the Chiari… it scares me. I want so bad to give up on seeing doctors and just let this chiari and whatever else is wrong with me take it’s toll… but for some reason I don’t give up and I honestly don’t know why I can’t just give up (ha-ha… literally trying to laugh right now lol). :joy::grinning::cry:I mean I’m glad I don’t give up and still fight for a good doctor… but I’m tired of it all… 9 months feels like forever now.


#2

Glad that you let us know how your appointment went.

Please know that it is very standard for there to be a lot more testing to make sure that other things are not also involved - and if there are other medical concerns to plan on addressing them first. Chiari and a tethered spine can go together. Chiari and cervical spine problems can go together. It does not make sense to release one end of the spinal cord when the other parts of the spine have issues. The neurosurgeon needs to do his due diligence in making sure that a Chiari surgery is the right option at the right time.

In comparison to a lot of other folks with Chiari, you are seeing a neurosurgeon very early in your Chiari journey. Folks have often had testing for many major organs and systems over many years before they get to a neurosurgeon. Chiari symptoms can mimic other concerns and enlarging a hole in your head is a major surgery. It is medically sound to do further testing at this stage in your journey. This will also make the likelihood of any surgery you may have more successful.

We all want a doctor to gaze into our eyes with deep compassion, to hold our hand, and to say that he will fix everything with one surgery, and he will do it next week with 100% recovery in two days. Life with a page and a half of problems is difficult and is a challenge to hold it together. But, I would like a doctor to make sure that everything is looked at before having a major surgery.

Make those appointments, double check that they are booked, and get on the cancellation list.

Holding patterns seem like nothing is happening. This is part of your journey, but is one shared by many. Good luck with this part of the journey (he did not say you were crazy, this is a plus in my eyes!).