Hydrocephalus : My Issue Is Scar Tissue…maybe…

Hydrocephalus : My Issue Is Scar Tissue…maybe…

Abdominal Adhesions/Scar tissue

“Abdominal adhesions are bands of fibrous tissue that can form between abdominal tissues and organs. Normally, internal tissues and organs have slippery surfaces, preventing them from sticking together as the body moves. However, abdominal adhesions cause tissues and organs in the abdominal cavity to stick together.”


Scar tissue…something I’ve mentioned before in one or two blogs. However, it’s something I didn’t fully understand, appreciate or question, this has now become apparent. I had my Gastroscopy last week and the Gastroenterologist, upon consultation, seemed to have a lightbulb moment. We discussed my abdominal pain and other symptoms before the procedure. He asked me about any previous surgeries I had and I continued to list the important/big ones. 3 C-sections, Cholecystectomy (Gallbladder removal) and 4 brain surgeries. He asked me about my shunt and I told him how in 2009 (7 years ago) I underwent 3 operations in 3 days. Diagnosed in 2007 due to Aqueductal stenosis caused by 2 episodes of viral Meningitis, 7 years apart, I had a VP shunt inserted for the first time.  For anyone who does not know what this is, the surgeon makes a hole in the top of your head and a thin tube (called a shunt to drain the CSF from your brain), is fed under the skin and an incision is made in your abdomen (just below the ribcage) to feed the tube to where it needs to be.

He enquired about the last 3 surgeries and I explained how I had part of the shunt replaced on day 1, whole shunt replaced on day 2 and then on day 3 the shunt was removed and an emergency ETV was performed. He looked at me and said “Hmmm….I don’t think your pain is being caused by the H Pylori. I suspect it’s, quite possibly, scar tissue causing your pain“. No one has ever suggested this to me. I mean, sure I know that shunts can become blocked by scar tissue and this means a revision to either remove it or replace the shunt. And, I now realise that upon hearing it, it sort of doesn’t have the same impact as when you’re actually faced with it.

I even know from a fellow ETVer that scar tissue can block off the hole in the ventricle in your brain. I’ve never experienced this so it’s not exactly first on my radar when I feel suspicious of my Hydro. He said we’d do the scope and take it from there.

When my procedure was done, he was more convinced than before that this is where my tummy pain is coming from. Saying, “There’s a bit of redness in the stomach probably caused by the H Pylori but nothing too concerning“. I felt a bit better knowing that the fear I had of the H Pylori potentially damaging my insides and causing stomach cancer could finally be put to bed…for now at least.

I decided to read up as much as I can about scar tissue and what I am possibly up against. Reading words like “Life-threatening…” certainly doesn’t make me feel comfortable. It’s probably in the same league as “Hydrocephalus can cause death…” or “ETV/slit ventricles can cause you to go into a coma“.

I’m a visual learner so the best video I found on YouTube is this to share with you.  The photo below is a copy of the one from the video – to give you better insight.

From my understanding this is the summary of it:

When you have abdominal surgery, your body creates scar tissue or adhesions.

This resembles a web-like appearance and can join things like intestines and other organs together. Organs, which are normally slippery and can move about freely as you go about your day, are now restricted. They can also attach to nerves causing severe pain.

It’s scar tissue and adhesions, which start causing problems in the digestive system with food passing or stools moving through the intestines, etc. causing blockages or pain. The way to “remedy” it, is with more surgery or possibly exercise/deep tissue massage (as demonstrated in the video mentioned above).

The simple equation: Abdominal surgery = scar tissue. Scar tissue removal = surgery. So a damned if you do, damned if you don’t situation. I hope to get confirmation of either the scar tissue existing or not tomorrow with an ultrasound and then, well it’s going to be interesting. I have my Hysterectomy scheduled for the following day, so yeah, not looking forward to being in recovery pain and then being hit by the death wave of pain from whatever is causing my abdominal pain.

As I told the Gastroenterologist, when this pain hits, I pray for death instead.  He looked at me emphatically and said “Please don’t do that…“. It’s a bout of pain, chills and fever, limbs that can’t move, severe nausea and vomiting and, no pain meds will touch it.

Again, this will be classed as something which I simply cannot ignore…

All I can say is, I have a new found respect for my fellow (shunted) Hydro warriors who have issues with scar tissue interfering with the normal flow of CSF or inner workings of their shunt.  I almost can’t believe that 7 years later, living shunt-free, my body is quite possibly affected by the after effects of the foreign object implanted to keep me alive (despite having been removed).

The joys of living with Hydrocephalus…NOT!


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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!


  • Sheree

    December 13, 2023 at 7:11 am Reply

    I had a VIP shunt placed in August this year. Even when I was in hospital I mentioned the abdominal pain but I thought it was just surgery pain. This gut pain worsened as the weeks have gone by. I can’t pee or poo without excruciating pain that lasts for hours. My neurosurgeon says the tubing is fine after having scans. I have had a lot of abdominal surgery and asked about scarring or adhesions. I too have seen a Gastroenterologist and due to have colonoscopy etc. But I know it’s the shunt. Got to keep pushing them to find out. Perhaps a laparoscopy is what I need. I know that shortening the tubing can help. Thanks for your article. I’m not alone!

    • Skyewaters

      February 17, 2024 at 7:45 am Reply

      Sorry for the late reply. That sounds terrible. I hope things have improved for you by now. If not, maybe push for a laparoscopy and shunt tubing shortening. I hope it helps. You are definitely not alone.

  • Amanda

    April 13, 2023 at 11:52 pm Reply

    I’ve been dealing with the same intermittent shunt pain for nearly 3 years, and they can’t figure out why. When I went to see my neurosurgeon in August he said it wasn’t broken and that we need to get updated scans before he will make adjustments. So I go on Monday the 17th at 8:30 to get a scan, and then 8:30 on the 26th for follow-up. I hope it’s nothing serious and can be fixed non-surgically but I have a feeling I’m going to be facing surgery soon and I’m scared as hell as I’m almost 35 and will be facing surgery number seven if I have to.

    • Skyewaters

      April 14, 2023 at 3:41 am Reply

      We are certainly caught between a rock and a hard place with this condition. Wanting and needing help to make the pain go away but not wanting to endure more surgery. Not an easy thing to go through, by any stretch of the imagination. Take it moment by moment.

  • Cathy J Losenegger

    October 28, 2018 at 6:10 pm Reply

    Thanks for sharing this with me.
    My niece is 30 and had exploratory surgery and she is covered with scar tissue . They are not sure what to do. She is in so much pain . We thought it was female problems but was not. We go back to the doctor next week.

  • Bobbie

    February 12, 2018 at 11:19 pm Reply

    This post is exactly what I needed today! I’ve been suffering so much abdominal pain I’m at the moment curled up in a ball crying on the sofa. I’m seeing a new neuro surgeon tomorrow for it so I’m hoping he’s receptive to hearing this info.

    • Skyewaters

      February 13, 2018 at 12:08 am Reply

      I’m sorry you’re in pain Bobbie. Prayers for your appointment???

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