ETV failure or not…time will tell

ETV failure or not…time will tell

This will probably be the final post on the ETV Failure Guinea Pig topic from me (unless something significant happens and I live to tell the tale)…I have been patiently waiting to see the Neurosurgeon I consulted with last year to discuss the sleeping episodes I’ve been having.  I was hopeful that he would be able to shed some light on what was going on and if he even suspected that my ETV is busy failing, would act on it.  However, the dialogue below is what transpired:

“So I saw you middle of last year is that right?

Yes, that’s right.

So what brings you in today?

I’ve been having sleeping episodes where I go to sleep on a Friday and literally sleep the weekend away.  Occasionally waking up to go to the toilet. I don’t eat and hardly drink anything, I can’t get myself to move and only come around by late Sunday evening.  However, it takes the rest of the week before I feel “normal” again…I’d probably say it feels like I’m…hung over…I struggle at work, can hardly concentrate and just amble through the day.

I see…So this only happens on a Friday?

Yes, thus far…I’ve actually had 3 episodes.  One in October last year, then December right before going on holiday and again in January this year.  If it was one isolated incident, I probably wouldn’t have taken much notice of it but this has happened 3 times now.  At my last consultation with you, you said because I have slit ventricles, I could slip into a coma…this is why I’m concerned and would just like to get some peace of mind…

I do understand.  However, there’s not much that I can do in terms of that.  I mean, I understand that you want peace of mind…obviously.  But, I’m not too sure it will be so easy to do.

I put your plan into place like you said with my last consult.  I contacted my GP on my way to the hospital to call ahead and let the ED staff know I’m on my way.  But, all that happened, was me being pumped full of pain medication and even after explaining that I would need an MRI with flow study to see if something was going on, they insisted on doing a CT scan.

From the notes, I can see there was nothing abnormal about your ventricles…which is good. 

Yes, but…the CT scan wouldn’t have shown anything anyway and that’s why I explained to the doctor on call that she needed to do the MRI.  She discussed it with her supervisor who agreed with me, that it would be what was required, and said that I probably know my condition better than them anyway.  They discussed it a bit more and the attending doctor came back saying that they would do the CT anyway as they needed some form of imaging.  It was apparently too late in the afternoon to do the MRI as people were going home…She  said the Neurosurgical team looked at the scans and were happy with it and that I could be discharged.

So my team looked at it?

Well, that was what she said.  Whether or not they actually did, I can’t confirm that.

I’ve had patients who are REALLY feeling sick and who’s CT shows enlarged ventricles but on the day of surgery when I repeat the CT, the ventricles have gone down and the pressure is gone.  I’ve even had shunts partially blocked and then unblock itself…So it might just be that when we do the CT Scan, your ventricles might look fine because right now, you look fine to me.  The MRI might not even show us anything either…

I know I look fine but I can tell you, I haven’t been feeling well.  My headaches aren’t as bad or frequent as they used to be either though I do wake up with a full feeling at the back of my head and over the middle.  If I do wake up with a headache, it usually subsides anywhere from 30 minutes to about 2 hours later and I feel fine again.  I can also understand what you’re saying about the pressure changing.  In fact when I woke up one Monday morning in December, when the sleeping episode happened again, I had my eyes tested the Wednesday  as the headache had subsided but wasn’t gone.  The pressure was apparently high but not high enough…so I’m assuming it was high on the Monday morning when the headache started and was at it’s worst?

Let’s just pull up that scan here and I can have a look at it.  The difficult part about your ventricles is that they wouldn’t show us much anyway.  I could order the MRI for you but if you are fine, it won’t show us anything.  If I look at you now…you look fine to me….You’re walking and talking, I can understand you.  Most patients I see are sick, really sick and most of them are even in a coma which then requires me to act.  In your case, there’s not much I can do because if I do operate on you when you are fine, I’m going to hurt you…every time we operate on you, we hurt you.

I understand what you are saying but I don’t want to go into a coma…I’m really scared of that happening.  I’d like to prevent it if at all possible.

I can certainly understand that but with your condition, it’s a bit difficult to preempt what’s going to happen.  I never follow-up any of my other patients who have shunts or ETVs.  I could have a follow-up with you through my Public clinic…you did say that you didn’t have insurance.  Is that right?

I do have insurance but it only covers 80% and with all the kind of investigations and tests you do with this condition, the 20% I have to pay is quite a big amount…

Do you have anyone who can attend the ED with you if you are feeling bad?  A friend maybe or your husband?

I had a friend  come to the hospital when I went to the ED but by the time she got there, I was too drugged to care or know what was going on around me.   They just pumped me full of morphine and sent me home…as I told you earlier.

Do you have family here?

Just my husband and children.

Well you’re going to have to get your husband to go with you next time and push back on your behalf.  He’ll have to tell them that you’ve been to see a Neurologist, you’ve seen me and you’ve been to the ED many times before with these symptoms.  They will have to get the Neurosurgical team to come and have a consult with you.  If you are too ill at the time to speak for yourself, that will be your only option.

Yes, but I did that…and it didn’t work…

The only thing I can do for you is refer you to a Neurologist who can then do the MRI with flow study, a lumbar puncture and see what else could be going on. 

I’ve already done that when I previously saw the other Neurosurgeon.  He too referred me to a Neurologist who just put me on this drug and then that, going from anti-depressant to anti-depressant.  She even referred me to a Neuropsychiatrist but that didn’t help anything.  Her final words to me were “we don’t know how to help you”.

There’s really not much else that I can do for you either.  I’m a surgeon.  If there is something wrong that needs fixing, then I can do that for you but looking at you…you look fine to me…

Is it fine for me to be feeling nauseous and dizzy every day of my life or struggle to concentrate?

No…it’s never fine to be feeling like that.

What about the sleeping episodes?

The sleeping episodes, could be an indication that the flow through your ETV is slowing down but we won’t know that without an MRI…it especially might not even show if you are fine and not symptomatic.  There really is nothing else that I can do for you…

Well, I think that’s it then.  Thank you for your time.

I could refer you to the Neurologist if you like…

No thanks…I don’t see where that will get me.  Besides, I’ll probably just have the same outcome I had the last time I saw one…”

He closed the door behind me as I walked away…

 

I wish I had the words to describe exactly how I was left feeling after my consult but 25 minutes later, I paid my $200 for the consult and left the hospital after shedding some uncontrollable tears in the bathroom.  I think I went into a state of LOCK DOWN…

After I published the ETV Failure Guinea Pig post, my colleague asked me a question to the effect of how I’ll know if something is wrong with my ETV.  I responded: “If you don’t get a blog from me for a while, then I guess you’ll know something’s up“.  The quote in the picture of this blog somehow seems appropriate – in more ways than one.

Am I now allowed to feel like giving up?

 

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Thank you for taking the time to read.

I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  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!

3 Comments

  • minionmayhem514

    March 31, 2016 at 12:23 pm Reply

    I’m absolutely enraged for you. Is there any way to change doctors or get a second opinion? I don’t understand why they won’t do anything. I would think that an mri would be standard practice. How else will they see everything?

    • skyewaters

      March 31, 2016 at 7:06 pm Reply

      Honestly, this is my worst nightmare all over again. In South Africa, I had exactly the same issue. That’s why I wrote a book about it. I thought moving to New Zealand (“where healthcare is so great”) would be better but I guess I was WRONG. This doctor is not the first I’ve consulted with here either…I’ve seen a few…

      • minionmayhem514

        March 31, 2016 at 7:08 pm Reply

        I’m so sorry. I just can’t get over the “I can’t help you” attitude. Do an mri! Do something to help!

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