Why is it so hard to find a good Neuro surgeon?

Why is it so hard to find a good Neuro surgeon?

I feel disheartened…almost helpless. Ever since I was diagnosed with Hydrocephalus in 2007, I’ve felt like I’m fighting an uphill battle. It’s not with the condition so much, which has become a part of me and that I accept. But, with the medical professionals, I have to depend on for care. I struggle to understand why some of them have told me I don’t have Hydrocephalus and how the very next one I talk to, confirms its existence without a doubt.

Trying to stop myself from feeling stupid for saying “I had meningitis twice” as some of them have looked at me half amused and without blinking said, “You can’t get hydrocephalus from meningitis“. I cower at this moment like a tortoise withdrawing into its shell. Can you imagine my relief when a Neurosurgeon I consulted with a few months ago told me without a blink of an eye “Well that can certainly cause it“…?  He left me speechless for a few seconds while I bathed my mind in the luxury of the words he uttered.

I struggle with knowing that I have reached a level of paranoia that just does not sit too well with me. Every inch of me feels let down…disappointed beyond the point of no return. However, I will not give up on myself because I am that worth it. I just feel disheartened to the core at times.

What is it that I want?  

Well, for starters, a doctor who actually knows this condition well enough to know that when I complain about something, that he shouldn’t just dismiss my suspicions at first consult. I want a doctor who is more knowledgeable on the subject than my limited brain. I need to feel safe in the knowledge that I am going to get the best care possible…

I swear, in all these years, there has been only one doctor who took me serious enough to act upon what I was telling him. The rest…well, you can read all about that here Hydrocephalus: Floating Faithfully

A simple rule of thumb going forward will be to ascertain if said doctor Specializes in Hydrocephalus (and specifically in ETV in my case). I don’t just want a generic Neurosurgeon and I sure don’t want to waste my time on a Neuro specialist. In my experience, all they do is trial you on this anti-depressant or that…I am not a Guinea pig. More importantly, I am not mentally unstable…(Yes, I know anti-depressants provide relief in this kind of headaches too but I’ve always felt they were silently thinking that about me…now I do sound a bit loopy – conspiracy theory. LOL!)

Anyway, I also don’t want to be referred to someone else after having the first consult. Going forward, I will do my research online and check for reviews of this person. Another thought is to find out if anyone else knows them and their “work“. So reference checks will be a requirement…

Part of my daily job, is recruitment. So the critical yet simple things that apply when hiring someone for a vacancy seems to make sense to apply in this case. Getting the right person for the job is key to me ’cause they sure as hell don’t come cheap either. I’m looking for a long-term relationship.

If you are lucky enough to have a good Neurosurgeon…hold onto them for dear life. I swear the next one I get…if I could attach myself…you can be assured I will.

If I had superpowers, I would gather all the Neuro specialists and surgeons in one room and disseminate all the knowledge available on Hydrocephalus. Getting them all on the same page just seems like a necessary step. Too bad I don’t have that power within me…However, I know, if I could find someone once before in whom I trusted…then my next safe pair of hands is definitely out there again.

I will find you…because I have faith…

The photo above is the view from my office.  I find myself staring out the window at work most days and the question of this post lingers like a song in my head long after it’s ended.  I love this view, simply because I love the ocean.  Just the sight or smell of it, calms my soul.  So while I don’t have answers for myself just yet, I enjoy the view and the benefits to my soul.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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  • Lawrence

    January 21, 2016 at 10:33 pm Reply

    No have recently been diagnosed with hydrocephalus and feel I’ve been treat with disdain. I’ve had seizures over the past 10 years but never did anyone arrange a brain scan for me. Recently that changed and I was diagnosed with hydrocephalus from a very concerned Doctor. As this happened on a training course for work in the UK, I decided to leave the course/hotel and head home to get checked out further. Arranged an appointment with a GP to arrange referral to the Neurologist closer to home. My GP began showing me info on Wikipedia. Hmmm so I wasn’t impressed. When I got the referral (didn’t get to see the Neuroloigist, just their “assistant” who despite me already having a CT scan and diagnosis from previous hospital, within just 5 mins and without reading the neuroligists notes who diagnosed me and without seeing the scan yet she said it sounds like Syncope (passing out). I was like…. Errrrr maybe you should get the scan from the previous hospital first before you diagnose me based on a five minute chat where I stated I have a poor memory (which my gf testified too), I’ve been told I have an usual strolling type walk (been told this for years), major seizures once every two years or so… But nope, she said that sounds like Syncope to me…. Obviously I done some research on it after I was diagnosed and these issues are known with hydro so I assumed it fit and makes sense. Especially considering I was already diagnosed using the CT scan, something she didn’t have available (due to laziness and incompetence). Then I went for scans etc who confirmed I’ve had it a very long time and it’s been longstanding and probably born with it (even though my head size was normal) and it should not effect me in my life even though I’d been in hospital regularly with seizures and pass outs over 10 years with no diagnosis provided. I was already filled with doubts over how they’ve treat me since, they were brushing off symptoms I explained like shakes and feeling dizzy (like I have extremely low blood sugar), blurred vision, collapse, seizure. On having the most recent major seizure (can’t remember it but apparently I looked awful with my eyes going different directions etc… ) the build up was about 10-15 mins of complete blurred double visions and black spots but I continued assuming I was just a bit ill.. I went to go on my lunch and these symptoms intensified. I was with two colleagues, I began to get much worse and walk in to things and had to grab hold of people to hold me up and to direct me where I was trying to walk, until, BOOM… I went down and the seizure began (apparently landed on an old lady eating her lunch before I hit the floor). It’s been terrifying…… Something else to mention, which although I believe unrelated but my mam thinks it’s to much coincidence to be interlinked …. I took a few weeks off work and I ended up deep within conspiracy theories (sort of still am although I look at them as fact, rightly or wrongly).. It’s clear as day to me but my mam wanted me to speak to someone and Doctor wanted to arrange a Pycosis team to talk to me… I have been reluctant to do this for lack of trust based on info I’ve learned on conspiracy theories I suppose but… My family have found lots of information to show there can be connections. Don’t get me wrong, I believe what I believe and don’t think it’s related however my mam has found many counts online of this with people diagnosed with hydro like this have or develop these types of beliefs so would be silly to think its impossible they’re related. They aren’t planning on any shunt at this time but my faith and trust in their ability to care for their patients physical, emotional and mental health is zero so I’m actually avoiding the doctors completely and don’t want to disclose all my concerns for fear of demonising my opinions and thoughts and this is where I am today… I will be allowed to drive again in March 2016 after 1 year on doctors orders …… I rely heavily on notes to myself to avoid forgetting things at work that I need to do…. Sometimes I think maybe I’m a hypercondriact and can’t see it lol but it’s not nice. Thank you for your post which gave me the courage to write this down as my story. Yes maybe my experiences differ from yours in many way s but so much of what you said you have been dealing with resonated with me and my own enough put this out there in response.
    PS – I’ve not focused so much on grammar etc here just thoughts and feelings hitting the page so apologies if it doesn’t read very well….

  • Joggingproud

    October 6, 2015 at 3:26 pm Reply

    Hello there. After stumbling onto your post, I was amazed at your story and the similarities of it to my own. I too have Hydrocephalus. I was diagnosed at 5 months old, as a result or complication, of Meningitis. This was in 1979. To make a long story short, I have had 3 shunts I think, and 17 surgeries. That’s the scary news. The good news is that my last surgery was in the year 2000, with a planned ETV. Jump 15 years later and here I am. No issues whatsoever with my condition. I have no functions shunts and have not had a “hydro-headache” since the ETV. Even though I was 22 at the time, I had my ETV surgery at the Childrens hospital in Buffalo, NY. Back then, I was going to college in Buffalo and ETV surgeons were hard to find. I’m not sure I can be any help to you, except maybe to give you hope. Until I read your post, I didn’t realize my ETV could fail. I was under the impression that if it was going to fail, it would have been at the very beginning. I am a very active person, playing sports and exercising and it’s never given me any trouble, knock on wood. In fact, I don’t even have a neurosurgeon where I live now and i have been in NC for 12 years now. Maybe I should get one, just in case. 🙂 I look forward to talking to you and reading more of your story. I hope this helped you in some way. Let me know if you think i can help in any other way.

    Simon.

    • skyewaters

      October 6, 2015 at 7:14 pm Reply

      Thank you for your comment Simon. 17 surgeries…Wow! That is scary. I think I’ve been told so many times about the ETV failing that it’s made me a little paranoid. Finding people like you is what makes it all worthwhile. You DO give me hope in knowing that you have thus far the longest lasting ETV I know of. I find value in what others share about their experiences especially what signs or symptoms to look out for. I know we are all different but I treat it as a heads-up moment and an opportunity to educate myself as I’m also constantly learning. I think finding someone you feel comfortable enough with is a step in the right direction.
      Thank you for taking the time to read my post and your input. I do appreciate it and feel free to keep in touch.

  • Stephen Dolle Neurosciences

    October 3, 2015 at 3:04 pm Reply

    What is it that you need answered? I am a consultant in hydrocephalus with expertise in shunt devices and clinical diagnostics. Yes, meningitis raises the risks of developing hydrocephalus, requiring placement of a CNS shunt. However, my understanding of ETV procedures, is that it would have a low likelihood of success because of the damage done to your reabsorption pathways on the surface of your brain. I would advocate finding the best suited shunt & pressure, and then taking the small steps to manage your daily challenges. Stephen

    • skyewaters

      October 4, 2015 at 12:55 am Reply

      Thank you for your comment Stephen. When I was first diagnosed, I had a Programmable VP Shunt placed. 2 years later, I had a revision done and subsequent removal of the shunt replaced by the ETV. This coming December, I will have had my ETV for 6 years, which has outlived the shunt system by far in my particular case. To answer your question, I have been told that the ETV can close and this can happen anywhere within the first 5 years of it being done. I appreciate that our bodies are all different and therefore mine might last longer than others. I’m just a bit concerned about the when, if at all and how it will happen. Not having a Neurosurgeon to ask these questions of makes me feel uncomfortable especially since I’ve been put in reactive mode. I’m also concerned about being told that there is a possibility of going blind, which I’ve been told ever since 2007. I don’t know if I should be taking note of floaters or my eyes/vision just feeling a bit different than what I’m used to. In this case, I also don’t know if the slightly blurred vision is because of my body just being tired, if I’ve been staring at my computer screen for too long or if there’s actually something else going on that I need to be aware of.

      I’ve consulted with a total of 12 different Neuro specialist and surgeons since being diagnosed and they have all had different opinions. I am at wits end and feeling a tad frustrated, hence my post. Your input is most welcome and would be appreciated.

      • Stephen Dolle Neurosciences

        October 4, 2015 at 10:41 pm Reply

        Yes, your ETV can close off and cause a significant neurological event, including, stroke or damage to your vision and optic nerve. I believe these risks are similar to those of living with a CNS shunt, where the two determinent factors are: 1) Degree of shunt or ETV dependance (i.e. your level of residual clearance); and 2) How quickly the failure would come on.

        I am not sure on the exact data as far as the useful life of an ETV procedure. There are many factors that would contribute to that time period. If I were you, I would first want to know my degree of residual clearance, as that should define the boundaries of how severe your hydrocephalus could become under the worst case scenario. And secondly, I would set up a neurological baseline with markers and such like I do with my DiaCeph Test, and keep an ongoing journal as to any changes, progression, or reoccurance of complaints. This is similar to what is done in sports concussion. But they’re markers define only concussion. You’d want to select markers for hydrocephalus like I’ve done with my DiaCeph Test. I’d love to have it made as a mobile app, but it appears the current costs & regulatory guidance make it prohibitive.

        You can visit my web site if you like to learn more about what I do. I’ve had a shunt (x12) since 1992. In 1999, my then nsg ran a CT clearance exam to see if I might be a candidate for ETV, which indicated not.

        Stephen Dolle
        http://www.DolleCommunications.com

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