My neurologist ordered an updated MRI of my brain and cervical spine as I’m still symptomatic 4 years post op.

The cervical scan showed Hydromyelia from C3-T2. I was sent to a new neurosurgeon since mine left the state. She told me I didn’t need surgery as my flow in her opinion looked good at this point. She said it’s probably just “how my spinal canal is”. This was not noted in my previous cervical scan which she did not review for comparison. And no other surgeon or provider mentioned this in previous scans, so it’s new since my surgery 4 years ago.

My question is, can my C3-T2 Hydromyelia just be incidental and no need to treat or watch it? No surgery is exactly what I wanted to hear, but she was very rushy and didn’t look at my scans with me and kind of blew me off. I cannot go out of state for another opinion due to insurance, and I’ve spoke to several other offices in my state who will not take me since I was already operated on.

I’m very symptomatic and I am ready to move on with looking for causes and treatments for my symptoms, but don’t want to overlook this if it holds answers.

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Hey Missy,
You’ll need to explain some things to me as I’m in Australia, we have a universal health cover here. In very basic terms it means if you want to see a dr, you can. So I’m unsure as to the limitations your specific insurer may have placed on your policy. When you say "I cannot go out to another state…’ do you mean physically you can’t. Could you ask for an interstate neuro to review your file/case?

I’m very unsure about costs/fees but I have heard of other members having such a review via the Mayo Clinic, which from all reports has a very good neuro team.

Nobody likes being blown off, but it happens a lot. These dr’s deal with this sort of thing every day and can be a little dismissive (OK, a lot) about it all. You and I don’t ever deal with ‘this sort of thing’ unless we have to and it can be damn shocking. We can’t be so dismissive because it’s happening to US!!!. If you are not comfortable with the opinions you have received, then you have every right to seek a 2nd opinion.

Merl from the Modsupport Team

Hi Merl. It’s an insurance thing. I’d have to pay for treatment out of pocket, so I can only be seen within my state for any care aside from if I were traveling and had an emergency. So I’m limited to only seeing neurosurgeons in my state. I’ve had 3 different opinions so far. My original neurosurgeon who said he saw some flow post op, but it was very subtle and recommended another decompression. After that, I paid out of pocket for a phone second opinion from Mayfield who said I’m blocked posteriorly. I then had confidence with two agreeing opinions to proceed with my neurosurgeon here. At my appointment to discuss proceeding with surgery, my surgeon then changed his mind and was wishy washy about the surgery and decided he wanted to go after a pinneal cyst instead. Confidence lost. Fast forward to now, during a flare up my regular neurologist was concerned and wanted me back in neurosurgery for a follow-up, by then, mine left so I saw the replacement who said flow is good, no surgery needed. Opinions are split right down the middle.

I don’t want surgery so I’m happy she said that. But also, I’m not sure I’m all that confident in her knowledge. Or anyone’s at this point. I’ve lost my trust. Plus this hydromyelia is new.

I just really want to know if I can have hydromyelia and it not be a concern. From what I understand, my tonsils would only still be pegged if there was restriction if csf and hydromyelia is a complication of or side effect from Chiari. I thought I’d ask here because if hydromyelia can be caused by other things, I’d feel better about my consult with her.

I have many symptoms, but one I’ve talked about before, the heavy, shallow breathing I get, has changed over the last 6-8 months. The heavy shallow breathing now sporadically just makes me stop breathing during the day. It’s like apnic events while I’m awake. Can’t move air in or out. It’s frightening. I don’t know the root of my symptoms anymore. The new neurosurgeon said none of my symptoms are from Chiari. I said what about the new hydromyelia, she said you probably just have a wide spinal canal.

Hey Melissa,
“I just really want to know if I can have hydromyelia and it not be a concern.”
Yes, you can, but then for some with hydromyelia the symptoms can be overwhelming. For some people hydromelia can resolve itself without medical/surgical intervention. For some people it can be a positional issue ie If they laydown for too long the fluid pressure can build and cause symptoms and because of these variables the medical opinions are also variable. It can be extremely difficult, when we receive mixed messages, to make any decision.

In VERY basic terms hydromyelia is a collection of fluid within the spinal column, widening the spinal canal, where hydrocephalus is a collection of fluid in the brain itself, widening the ventricles. With the pressure widening the spinal canal it puts pressure on the spinal cord and this can cause all sorts of issues with sensation. The question is why is that fluid collecting? What is preventing it from draining?

Some medicos are of the opinion that the size and location of the blockage determines the severity of such issues, but that is not always the case. Some people can have minimal blockage but have MASSIVE symptoms and yet others can have a large blockage with very little symptoms at all. I have issues with hydrocephalus, pressure within the brain and have all sorts of weird/odd sensation and pain. I’ve had neuro’s tell me ‘You just have a low tolerance to pain…’ but what I have is a low tolerance to know-it-all medicos. Honestly, some of them have no clue just how bad BAD can be. I can completely understand why you say ‘…I’ve lost my trust…’

Merl from the Modsupport Team

Hello, thank you for sharing. It’s all about how YOU are feeling. Don’t allow yourself to be dismissed. If you don’t feel well or right and there is build up of fluid and obstruction of CSF flow, then something should be done before it progresses. If this were me, I would get my hands on all of the radiology reports that state the fluid issues and the CD of images, not sure if you did that or not. I always read the reports for myself. A lot of times the radiologists make recommendations. I’m not sure if you had a CSF flow study, I hope the physician is making their decision of no flow issues based off that. The physicians need to listen to you, I hope you get a solution and your symptoms get better!

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