Living with a VP Shunt is not new to me but, this time, it’s different.

Living with a VP Shunt is not new to me but, this time, it’s different.

For a start, I can hear my shunt draining CSF when I change positions or tilt my head a certain way. This is something I did not experience with my Medtronic programmable shunt. There are even times where I can hear the little ball inside the valve, rolling around like a bobble head. Especially, when I shake my head from side to side. And, I can feel my shunt tubing inside of my abdomen. It’s not a constant feeling but, at times, it is noticeable.

When I was first discharged from hospital, back in April, I thought what I was feeling was possibly damage caused by the catheter I had put in during surgery. There was certainly enough discomfort in that region for me to be convinced thereof. For anyone who can relate, it’s when your catheter is full, and the urine literally runs back into your bladder. Not a very comfortable feeling however, the relief of letting the liquid run in the other direction, towards the bag, is pure bliss. I know this because I’ve asked nurses in the past, to check and see if the catheter was draining, as I feel a sharp stabbing/pinch of my bladder.

Shunt tubing can cause a different kind of pain

At my post-op follow-up appointment, I asked Dr Tollesson about a sharp pain I felt directly beneath the scar on my abdomen. My overthinking, analytical brain led me to thinking it might be scar tissue forming, causing a tugging or pulling feeling. He said this was likely, so I made peace with it, as I know there’s not much he, or I, can do about it. I figured once the scar tissue had formed and the internal healing was done, the discomfort would ease and things would improve. Therefore, it would require a bit of patience from my end.

Although this feeling has improved quite a bit, there are still many moments of discomfort and sharp pain, which I can only attribute to my shunt tubing. For example, I know there are a few loops, which I plan on asking Dr Tollesson about; whether it would have any effect on the flow of CSF or be of any significance.

The more embarrassing part of it all, is getting a sharp pain up my backside without warning, more times than I care to mention. It causes me to grab anyone/anything next to me and utter obscenities like someone who has Tourette’s (not mocking and no offense to anyone who suffers from this – I in no way, shape or form, envy you!). It’s something which cracks my family up but, is far from funny (or pleasant) to me!

I’m left with a feeling of helplessness where I feel powerless to stop or change any of it…

Upon closer inspection of my shunt X-ray, it’s quite clear the cause of my discomfort is the shunt tubing, which rests in the region of my bladder. Regardless, I understand that the amount of slack given to the tubing, which “floats around freely within your abdomen“, is needed and not something you can get around.

Follow the shunt tubing

Knowing this, and self-diagnosing by applying my own thinking behind it, leaves me feeling more at ease. But, also utterly helpless, because I know there’s nothing anyone can do about it. The loop in the tubing, the location where the slack is resting – it’s something I will have to live with. For however long this shunt remains inside of me.

I’m left wondering how younger kids cope, as they grow, and just how much discomfort they experience, because of it…

Choose your “poison”, choose your battles

Like I said in my previous post, it’s a source of comfort hearing my shunt draining the CSF. The headache I had a few weeks ago eventually subsided. As I suspected, at the time, it was caused due to work stress and a project I was leading. After implementation, all the pain and discomfort went away. But, as I’m aware, stress adds unnecessarily to the load we already carry. The hope is that my current shunt will serve me well as a backup to my (still open) ETV.

Knowing what I do about shunts and the potential complications/risks they come with, I’m appeasing myself in the knowledge that I hear “Sophy“. Every morning when I get out of bed and sometimes during the day. My headaches have subsided considerably, only making itself known when I bend down or cough. I still have no agreeable pain relief to take so, with my current bout of cold symptoms, I’m left feeling miserable. BUT, thankfully, I don’t have COVID, so that’s a positive. Also, I have no more dizziness or nausea and hardly wake up at 3am!

However, I did have an episode of partial vision loss last week at the office (same as beforeserious PTSD de ja vu moment!), which wasn’t migraine related. Despite freaking out at the time, I soon managed to move past it all and carry on with life – because that’s what you do! It was an experience which left me feeling extremely lonely and almost helpless but, that’s a post for another day. It’s a “File, Save As” moment, as we say in IT, for my follow-up appointment with Dr Tollesson at the end of September – if I remember. If not, oh well…

Shunt failure or infection

I keep it in the back of my mind (as it may OR may not happen), remaining vigilant and aware of any signs or symptoms.

The way I see it, a shunt infection or blockage at this stage (which is highly likely), will be more detrimental to my health than the odd sharp abdominal pain, stitch or literal pain in the ass! Despite this line of thinking putting things into perspective, it does scare me and has me on constant high alert.

I’ll be honest, all of what I’m feeling physically causes me to regret my decision to have the shunt put in, as opposed to redoing my ETV again. But, (I believe) I had good enough reason for my decision and choice, at the time. Who knows, maybe in time I’ll change my mind and switch again, if the need arises. Most of us don’t have a choice of treatment option between a shunt or ETV; either way, it’s not much of a choice in the grand scheme of things…Furthermore, my downward spiral seems to be an ongoing thing, something else over which I don’t have much control.

I just have to find a way to live with all of it.

4 Comments

  • Richard (Rick) Fry

    July 24, 2022 at 4:51 pm Reply

    Hello Skye, After I had one of my previous revisions(?), not sure which one, I had pulling and adhesions at the base of the catheter! For my 1st revision at age 10 they put in a loop to allow for growth, I was still just a little over 4ft tall! I had a growth spurt between 13 and 16! I also had jaw surgery on my mandible to shorten, to give me a better bite! I grew a little more afterwards and my oral surgeon was disappointed by my growth! He didn’t want to go from the outside because of my shunt!
    I was in a rear end car accident before my 2nd revision, and developed some scar tissue from that, that yanked so hard, I had an foul-mouthed outburst while riding in the backseat of my carpool! I had to have it removed and they put an extension in my neck!
    I still have some tugging on my shunt that can also bring some foul outbursts! My in-laws thought I was just acting up after my 4th revision just to get attention!
    My brother-in-law, tells me what I should be doing, he’s an LPN, as is my wife but not as long, and feels he’s more knowledgeable about it than I do!
    As did their father! Apparently he, (father-in-law) discussed my condition w/his PCP, who, apparently told him some of the severe symptoms! So father-in-law told them I’m going to be brain damaged after I was discharged!
    I’ve been able to notice(feel) my shunt/catheter under my skin since my 1st revision at age 10 in ’69!

    • Skyewaters

      July 24, 2022 at 9:06 pm Reply

      Sounds like you’ve been through quite a bit in your lifetime!
      Shunts sure do come with their own set of challenges. I can certainly relate to the outbursts because of it. Thank you for sharing ?

  • Christine Cormack

    July 15, 2022 at 7:03 am Reply

    You’re right Celeste – best idea is to learn to live with it. Best wishes! I saw my neurosurgeon last week and was disappointed when he told me he couldn’t further adjust my shunt because he was concerned that it could bring on a stroke. Aaaargh! In that case, I’ll put up with my ‘old lady’ walk. It embarrasses me, but the outcome of a stroke would be worse.

    • Skyewaters

      July 15, 2022 at 9:36 pm Reply

      Hi Christine. I’m sorry to hear that. Somehow it just doesn’t seem fair, does it?
      I’ve actually never thought about it before. I wonder what the options are when they can no longer adjust it. Is that when they start suggesting shunt replacement? Do you think a second opinion would help? Sorry for all the questions.
      I truly hope your symptoms ease up?

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.