Hydrocephalus: When someone throws you a  lifeline…use it!

Hydrocephalus: When someone throws you a lifeline…use it!

When I stepped into that ring again yesterday, I was “prepared” for the outcome I got…or was I?

Funny thing about it, with the softest blow, I feel like I’ve been beaten to a pulp. That’s how little it took. For me to know the possible outcome, thinking I could handle it, to the emotional wreck I see in the mirror this morning. As my husband said before he left, giving me a hug, “You look like you need TLC from all directions, and more, today…

In a nutshell, I have been referred to a Neurologist: “They do Botox shots here now you know and that ETV jet looks normal. It looks really good…” No further explanation or trying to figure out what caused my visual disturbances or the extreme dizziness in July and August this year. Even the right-sided pain and numbness has been dismissed with a slight turn of the head and slow nod. A look I’ve seen so many times before, which I interpret as, “If I nod my head yes for long enough, she’ll think I’m actually listening when I don’t have a clue as to what to tell her next”. Our consult ended with “You’re a complex case…as you know”. I was told that my consult would be with her when I got my letter and call from her room, but instead, I ended up seeing a 2nd registrar after I told the 1st one I was there to see Dr L. She just came in afterward and gave her opinion without listening to my new symptoms. Why have me come all this way if you’re not even going to have a proper consult with me..?

I think I may have put too much hope in Dr L…

Leaving the hospital, walking in the rain back to my car, I couldn’t control the outpour. How is this happening again?!

I had my pity party yesterday, unable to stop the tears, I licked my wounds and was left swaying in the wind – trying to figure out my next move or better still, decide if I have any fight left in me. I felt like such a hypocrite because I always tell people to never give up on themselves and yet, here I am.

My saving grace and voice of reason came in the form of Cindy. I saw her message while in the waiting room, wishing me luck for my appointment. The first person I texted back after and, thankfully she’s been walking alongside me ever since. A voice of reason in a troubling time, steering me in the direction of what my next move could possibly be. I’m so thankful!

My MRIs have always shown flow through the ETV stoma. Something, no surgeon would disregard and despite you being symptomatic, their first response is: “To do no harm”, words Dr L used at the start of our conversation yesterday. These words speak volumes to me, and I immediately know what they mean once uttered.

But, with the help of Cindy, I now understand that asking for brain surgery – is not the way to go. Her suggestion of asking for a Lumbar Puncture, when I’m next symptomatic being a standing order, sounds like the sensible thing to do. This way, we’ll know what the pressure is, and they have a clear indication of a problem they need to address sooner rather than later. In hindsight, MRIs with flow study, despite being the best scan to do with an ETV, will not show up web-like scarring, as an example. It makes complete sense that the only way to know if the pressure is high would be by the increase in size of your ventricles (something not always apparent, especially if you have slit ventricles) or by doing an LP.

In 2013, I had one done and my reading was 21. Normal pressure is between 5 and 15. According to the surgeon at the time, it was “High but not high enough as some of my patients have readings of 60 and upwards”.

My normal is not your normal and to be honest, I don’t know what my “abnormal” is either because I’ve only once bothered to find out what my LP pressure is. It boggles my mind and would seem such a sensible thing, though it’s not too late…

So, going from an emotional wreck with no clear direction, to someone with a plan (sort of). I guess I’ll just have to wait it out until I’m symptomatic again, hoping and praying that I get through it, so I can get my pressure reading and take it from there.

As for Dr L…

I know I have to feel comfortable with the person who is going to “mess with my head“, as I’ve said before here. Honestly, I’m on the fence in this regard. Part of my thought process yesterday was, L is not the last letter in the alphabet so, I either stop there and give up trying OR, I move on to the next letter. I told my husband, “You know how people tend to say to someone who has Cancer, keep fighting, don’t give up. Well, I kind of feel like that. You keep asking me why I keep going back when the doctors don’t do anything – it’s because of you and the kids. But I don’t think I can do this anymore. I’m tired of fighting, I’m tired of this condition and I’m tired of the same outcome”. I didn’t want to tell him any of it for fear of hearing “I told you so…” but I had an IDGAF moment through the tears and opened myself up. He was quiet and didn’t respond but held me close…That was good enough.

Bottom line is, I’m tired!

So, what do you do when you’re tired? You rest, take time to replenish your energy and you carry on. That’s what I’m going to do.

Since Skyewaters is all about being “honest, no bullshit or fluff and telling it like it is”, I’ll say this much: To anyone who feels disappointed in my reaction or feels like I’m a sad case – Go ahead. I don’t have all the answers, I don’t know the magic formula and I sure as hell can’t make it all better. Many have thanked me for my blogs and expressed their gratitude of feeling validated – believe me, it’s a two-way street. To the people who provide me with reciprocal inspiration and motivation, I thank you from the bottom of my heart.

What I do know for sure is, I’m the strongest person I know and for now, I’m going to try and be kind to myself. You can rest assured I’ll continue sharing my journey (despite wanting to shut down this site yesterday) until I have no words left in me.

So, stick around and keep on reading or don’t, the choice is yours.


  • Jessie

    November 3, 2019 at 4:30 am Reply

    Hang in there. I would try to get a new NS if I were you. I almost died because a NS took out my shunt so my mom took me some where else and they basically saved my life but I was still in home hospice for about nine months. I liked the pet therapy and art therapy.
    Glad that new NS saved me and I have been brain surgery since 2008.
    I have been getting botox shots for many years. But the pain is less frequent and hurts less. Maybe that worth trying.
    Sorry you in pain. Namaste Jessie

    • Skyewaters

      November 8, 2019 at 10:38 am Reply

      Thank you for your comment Jessie. It’s not so much that I’m in pain but the symptoms and episodes which I have been getting, causing concern. ETV failure is always at the back of my mind and something I can’t just ignore. As for the Botox shots, we’ll see what the Neurologist has to say when I eventually get an appointment 🙏🏼💙

  • Bethany Bacon

    November 2, 2019 at 9:11 pm Reply

    Thank you so so so much for posting! I can’t say thank you enough. Please continue to post; I am always encouraged in knowing that there is someone else who can relate to my emotional and physical feelings! I don’t know if that doctor is your only hope, but if you are able to have another person not only review your case, but take time to listen to you, than may I suggest doing that. Currently, I am trying to get another neurosurgeon to review my case and see me.

    • Skyewaters

      November 8, 2019 at 10:35 am Reply

      You’re welcome! I don’t think I’m at a point where I’ve reached a decision yet on that front. Thankfully life and work keeps me busy and my mind occupied.
      All the best with your search for a new NS🤞🙏🏼💙

  • Nancy

    November 2, 2019 at 8:33 pm Reply

    Your posts are so very similar to my sons(43)experiences with his lifelong hydro journey. Countless numbers of times to the ER only to be told cat scan looks fine (ETV) and sent home. He now has a Dr. who is truly listening…..thinks through MRI that he probably has a spinal fluid LEAK but those are extremely hard to find and repair. Leaks of this nature are a very common cause of headaches. His latest surgery included removing as much old tubing as the Dr. could and shutting up an old shunt that was suppose to be in Dandy Walker cyst, for the past 41 years, but was floating around possibly causing overdrainage! He is 3 weeks post surgery and finally had a solid week of feeling “ok”….time will tell if he will continue to feel “ok” sorry if I am rambling but we DO feel your frustration!

    • Skyewaters

      November 8, 2019 at 10:33 am Reply

      Having a doctor who truly listens makes such a difference. I pray the operation has been successful and his recovery goes well. One day at a time🙏🏼
      Ps. You’re not rambling, thank you for your comment and understanding💙


    November 2, 2019 at 3:55 pm Reply

    I am sorry always seems like the thing to say after reading something like this, but you know, there are sometimes, despite all best intentions, it just isn’t enough! We go with high hopes, although inside we are telling ourselves not to get our hopes up, but being human, we just cannot help it. We have to have something to cling onto. Right? I wish I could say some magic words Skye that would make it all go away, but as we both know by now, life is just not that simple! However, tomorrow is another day and without wishing to sound like I am trying to make light of it, nothing could be further from the truth, we both woke up this morning and get to appreciate another day! Give yourself a day or two Skye, don’t be too hard on yourself. Then regroup and forge forward. Look forward to your next post!

    • Skyewaters

      November 8, 2019 at 10:26 am Reply

      Your comment is greatly appreciated Ian. Thank you💙

  • scottmccabe

    November 2, 2019 at 3:48 pm Reply

    Thank you we all appreciate your openness and completely understand your thoughts. Keep it up.

    • Skyewaters

      November 8, 2019 at 10:24 am Reply

      Thanks for that Scott💙

  • Jennifer Lane

    November 2, 2019 at 3:01 pm Reply

    Thank you for your honesty. I understand…I go through the same symptoms, thoughts and feelings. It is not easy. But we are fighters! Get some rest. Get recharged. I will be looking forward to reading your next post.

    • Skyewaters

      November 8, 2019 at 10:24 am Reply

      Thank you Jennifer for your comment. 💙

  • Anonymous

    November 2, 2019 at 9:34 am Reply

    Thanks once again for sharing.

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