Hydrocephalus: The search for medical records and pressure readings

Hydrocephalus: The search for medical records and pressure readings

Since my post on the possibility of scar tissue from my old VP shunt, causing my abdominal pain, there’s a new theory which has come to light.  It’s evident my medical history is an arm’s length (and then some) of theories and possibilities.  Anyway, the latest theory is that we need to do an abdominal/pelvis CT to see “if any parts of the shunt are possibly still floating around in my abdomen as it may have broken off while the surgeon tried to remove it“.  Apparently, this can be a problem for any surgeon especially factoring in the amount of time it’s been inside of you.  (Truth be told, I’m a bit doubtful that the scan will show anything but I’m willing to give it the benefit of the doubt).

Sitting in consultation with the Gastroenterology surgeon a few weeks back, I was faced with questions about my shunt removal surgery and subsequent ETV (Endoscopic Third Ventriculostomy) procedure in 2009 (questions I’ve been asked so many times before and have very little information on).  Needless to say, I was unable to shed much light on anything for him.

For anyone who has not read my journey, here’s a bit of context.  I had my VP shunt inserted after diagnosis in 2007 (age 29) and after just 2 short years, had 3 operations over 3 days consisting of 2 revisions and then removal of the entire shunt, which was replaced by an ETV.  These procedures were done in South Africa in a city approximately 8 hours from my hometown.  I had no help from the surgeon who initially performed my 1st shunt placement and none of the other doctors in my hometown was prepared to help either.  Hence my journey 8 hours away, at 5 and a half months pregnant…I was beyond desperate.  I was comatose for a week since admission and therefore have a gap in my memory, one that no-one has been able to successfully fill.  Read the rest here.

I left the country a few years later, after having follow-up MRIs to ensure that my ETV is working and a few years after that so did the surgeon (I have no idea where).  When I started looking for an NS to register with, in this new country, I found a growing need to track down my medical records, I now have a “bit” more information but still not all of it.

One thing I’ve always tried to find out was what my pressure was the first time, which led to me having the shunt surgery.  (I still do not know but am determined to find out).  Then, there’s the pressure reading which ultimately forced a Neurosurgeon to deem it necessary to operate on a 5 and a half month pregnant mother.  In my search for my medical records, I managed to get copies of the ward file kept when I was admitted.  Piecing it together and trying to read between the lines.  I then gave it a rest because there was no other information in the hospital archives.  Then, last week, through following a breadcrumb trail, I was advised to contact the surgeons (now) ex-wife who also practices at the same hospital where I had my surgery as an Endocrinologist.  I thought it would be a dead end but turns out, she has her husband’s patient files.  Why…? I guess I’ll never know but it’s not important either, especially since I’m able to get a few more pieces of the puzzle from her.  Forwarding contact details for him are not forthcoming either…I’ve asked.  Besides, since they’re divorced, I might just be scratching at an old wound…and that’s not my intention.

Let me tell you, this has been a mission of note.  Having left the country in search of better medical care, without that “crucial” information, has been a torturous journey.   Especially having surgeons second-guess whether or not I actually do in fact have Hydrocephalus (There’s been at least one Neuro specialist who said he “doubted that I ever did“).  In fact, I have to honestly wonder, what relevance it has to know the past pressure if any?  I’m not saying it’s not important, it’s just that I personally don’t know.  If anyone does, please feel free to explain it to me…

Since I have never been able to give that information to the Neuro specialists who became part of my journey, since my last brain surgery, I’ve been prodded a few times again and endured the discomfort and pain of having that needle stuck into my lower back.  (I seriously hate a lumbar puncture).

Anyway, the pressure in 2013 was measured at 21, with the normal range being between 15 to 20 (as I’ve been told).  Therefore, high but not high enough to cause the surgeon I consulted with any reason for concern.  Then, the pressure measured in 2009 from the e-mail I received, was 38.  Now, I am well aware that there are people who have had pressure readings of “50/60 shooting to the roof”.  However, since I am a firm believer that we are anatomically all different despite having the same condition, the two pressure readings for me seem high in comparison (for me).  What it means for me having this “new” information, I’m not entirely sure but it certainly feels like a win in piecing my Hydro puzzle together.

A few weeks ago, discussing that time in my life with my dad, he asked “Why is it so important to know what happened at that time?  Just let it go as it’s in the past“, he advised.  I actually considered it. But, since this is my body, my condition and my responsibility to my health to be the best advocate for myself that I can be, I’m deciding against his advice.  Furthermore, having all the information on your medical history is important because it means you can provide much-needed intel on your condition to any other medical professionals you deal with.  Own it!

One question still begs from that time.  Why did he have to operate more than once on me?  I guess I’ll never know.

My next step is to have the CT scan tomorrow and hopefully, have an answer/or not.  Going over the hospital file and trying to get the pressure readings before my initial shunt placement and making a mental note to not walk away from any test or procedure empty handed again.  One would think that with my memory issues and have been through the same consultation so many times before, where doctors question you on things and you just simply don’t have the answers for them, that I would have learnt my lesson.

Going forward, I will be going over the hospital file again, trying to get the pressure readings before my initial shunt placement and making a mental note to not walk away from any test or procedure empty handed again.  One would think that with my memory issues and having been through the same consultation so many times before, where doctors question you on things and you just simply don’t have the answers for them, that I would have learnt my lesson.

Oh well…

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