Dr “O” has done it!

Dr “O” has done it!

Finally! I have someone who has listened, not just by acknowledging what I’m saying but by actually validating EVERYTHING I’ve been saying. He didn’t tell me I’m complex or try to palm me off on someone else. I felt genuinely listened to and experience so much empathy, which is so rare in a Neurosurgeon.

I cannot express the emotions tied to hearing the words “The aqueduct is narrow and half blocked. I can see there is a partial blockage”. The impact of these words does not escape me i.e the meaning of the action that needs to follow. My consult went better than I had anticipated but the bottom line (and more importantly), this doctor can see the problem and pointed it out to me. Those before him…could not!

It’s been a long road and a struggle to be heard.

Anyone who follows my blog and journey will know what I’m talking about. But, for anyone who has just stumbled across its path, I’ll give you some context. Since 2012, 2 years after my ETV was done and shunt removed, I’ve been intermittently symptomatic. Always fearful that my ETV is failing. No other doctor gave me the time of day…until now. Some have made more of an impact on me (negatively), than others. One even argued a point that would leave him humbly apologetic, after my consult today would surely prove him wrong. All of them wanted to trial me on one or other drug, pass me from Neurosurgeon to Neurologist because “nothing obvious” indicated a need for surgery. I was labelled stressed, depressed and/or crazily losing my marbles…The first two I’ve seen in black and white on discharge and clinical notes but the latter, they didn’t have to say, I’ve just been treated accordingly.

I am one more MRI away from having brain surgery number 6! If I sound happy about it, I guess that’s because I am. Not at the thought of another brain operation but, like I’ve said before, we have NO OTHER CHOICE. It’s a case of brain surgery OR going untreated and succumbing to the effects of it – either option does not sit well with me however, the latter, is a hard NO, NOT GONNA HAPPEN!

Contrary to what I thought, ETV closures do not happen instantaneously as I had feared in the beginning. (That doesn’t mean others haven’t experienced it that way).

Driving home from my consult, I couldn’t help but cry all the way home. A mixture of emotions washed over me, with so many things going through my head. Past consults, being dismissed, unnecessary arguments with my husband, feeling helpless and seeing that continuous downward spiral. Picture any movie you have ever seen where someone goes from being down and out to suddenly winning the lottery, where all their worries disappear, in an instant. Now, times that by 10 and you’ll get the idea.

One man. That’s all it took. Looking at my MRI images and walking me through step-by-step what he was seeing, disagreed with a marking on one of the images by the radiology team and what clearly showed him the problem.

Experience vs Text book knowledge

Most likely, it could have been the patient before me that he dealt with where he, “felt guilty for letting this woman go 2 years before agreeing to operate and then found a problem with her ETV, contrary to what her MRI had shown”. She had been to psychologists, neurologists and done everything under the sun, looking for help (sounds so familiar, doesn’t it?). Apparently she had come to him after he had done her ETV a few years before, complaining about headaches, nausea and “just not feeling well“. Her MRI showed the ETV was closed hence he operated but when he redone it, the hole closed up almost immediately, leading to his out of the box way of thinking now.

Experience is a better teacher than anything else in life…

All I can say is, Thank you Lord!

In a nutshell, my 36-minute consult with him went as follows:

  • I made notes on what I wanted to convey and asked questions I needed answers to.
  • Pleaded my case and hoped he’d see the human across the table from him – husband lost his job and thanks to COVID, hasn’t been able to find anything else. I’m supporting our family and need to work, hence, I need to get this sorted if there’s a problem. Feeling sick is affecting my quality of life and impacts on work delivery.
  • I have insurance to cover any surgeries as I know ETVs and Shunts aren’t a cure.
  • I expressed my concern about the dizziness, which has just increased over the last month and a half. Accompanied by extreme nausea but no vomiting.
  • The visual disturbances, headaches and insomnia are wearing me down.
  • We discussed the likelihood of CSF overproduction, which he explained away as: “It’s not so much an overproduction as possibly a rate of absorption issue due to a partial blockage/narrowing of the aqueduct. If there’s not enough fluid to keep the brain buoyant, you will develop headaches and feel unwell, but when the CSF pushes through, you start to feel better. Until it happens again.”

I explained the due diligence I’ve done in accordance with other specialists:

  • Trialling medication, consulting with a chiropractor and even getting other investigations done in case something else is causing my symptoms.
  • I explained that the headaches continued regardless of being on Topirimate (migraine preventative), which made me loopy, unable to concentrate, focus on my work or function normally. I’ve trialled Amitriptylene, which made me severely suicidal.
  • I also explained how both the Neuro ophthalmologist and Gastroenterologist reverted back to my Hydrocephalus as a possible cause. Considering the brain-gut connection, his response to that: “Yes, of course there is”.

Next steps:

  1. MRI/MRV/MRA + Flow study to check the speed i.e. flow rate of CSF through the ETV.
  2. High definition CT C-Spine

When I asked him what the outcome would be from the MRI, and if he would act regardless, he said it would be one of two things:

  1. The MRI confirms what he is seeing in which case, “we go in and redo the ETV, which is such a simple procedure to do and because it worked well” for me OR
  2. It shows everything as normal, “then we need to decide what to do next“.
  3. If the C-Spine CT shows anything significant, spinal surgery will be a discussion point. However, it will have to go on the back burner until after my Thyroid and Brain surgery.

But, from what he sees, there is definitely something wrong…Hallelujah!!!!!


  • Diane Gerhardt

    April 16, 2021 at 10:40 am Reply

    I’m so happy for you ♥♥♥
    Follow you on Facebook, but I prefer to read here, it’s more detailed –
    and sometimes i miss a post from you !
    I’ll see my new doctor next week and i’m as excited as always 🙁
    I only wish you the best ♥♥♥

    • Skyewaters

      April 17, 2021 at 4:36 am Reply

      Thank you! I’m relieved as well to have found someone who will listen. 😊
      All the best with your consult. I hope it goes your way🤞🙏🏼
      PS. Thank you for your interest,concern and for following 💙


    April 11, 2021 at 11:15 pm Reply

    Been following alongside with you Skye, so for the most part, I know what you have been up against. I am so happy for you and your family that you have found a break and a possible resolution. I just hope for all involved, it works out to be just what is needed. If you don’t mind, when you have any more information and you get your dates, please keep me apprised. Thanks and best wishes!

    • Skyewaters

      April 12, 2021 at 4:40 am Reply

      Thank you 😊 I hope so too🙏🏼
      As for the updates, you can be sure to read it here first!

  • Anonymous

    April 7, 2021 at 1:28 pm Reply

    Is Dr. O at Emory?

    • Skyewaters

      April 7, 2021 at 11:35 pm Reply

      No, he’s in Brisbane, Australia

    • Jessie

      April 8, 2021 at 2:40 am Reply

      Hi, thanks for sharing. I have had non stop headaches that vary in intensity, sleep problems, nausea, vestibular, ocular, and other problems since my TBI. I don’t have any shunts, or anything, but I feel like no one listens. there has to be something causing these headaches that are 24/7 365 for the past 14 years. I had my screws removed, but the neurosurgeon wouldn’t take out the plate, as it was on the “wrong side” of the skull. Basically it’s pressing on the dura? They said it wasn’t cause for malpractice, and that he thought it was safer not to try and remove it. Thus, I have been on disability, can’t work a normal job, can’t enjoy things, because everything I do increases the headaches too unbearable. I live in the U.S. I have tried migraines meds, depression meds, anxiety, you name it I’ve tried it. I’ve been to the Mayo Clinic, and no one can explain, and some just say I’m imagining them. Yea, because imagining headaches is so much fun. Do you have any suggestions for me. I’m glad you have found someone who is going to help you and that has listened finally!

      • Skyewaters

        April 8, 2021 at 3:10 am Reply

        I don’t think you are making it up. It sounds legitimate and cause for concern. The only advice I have is to keep at it and try to find someone who will listen. I know that’s easier said than done, having gone through 15 doctors in 14 years!
        It’s ridiculous that we have to go to these lengths but if I offer you anything else today, let it be hope that someone will listen. It’s an expensive process and very frustrating, I get that. This is the 3rd country I’ve sought help in but in the end, I found it. Just don’t give up💙

  • minionmayhem514

    April 7, 2021 at 12:03 pm Reply

    I’m so happy that you have answers!!! I feel like the entire time I’ve “known” you, you’ve been dealing with doctors who ignored your symptoms and didn’t believe you. I’m so happy to read this update! 💜

    • Skyewaters

      April 7, 2021 at 9:49 pm Reply

      That makes two of us! And, it definitely felt that way but this one gives me a different impression.😊

  • Anonymous

    April 7, 2021 at 11:32 am Reply

    Wishing you all the best for your surgery. I hope all goes well and you get back to enjoying life. Good on you for not giving up. Thank-you for sharing what you are going through. There is not as much information out there about ETV failure.

    • Skyewaters

      April 7, 2021 at 9:48 pm Reply

      Thank you, I hope so 🤞🙏🏼
      Giving up will always be a first instinct but I have enough people to remind me why I shouldn’t. As for the ETV failure information, I agree fully💙

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.