ASK THE EXPERT - Episode 1 Abdominal Pain

Abdominal pain. Shoulder pain. Can these be related to hydrocephalus and your shunt? This episode explores the relationship between migratory pain in the abdomen or piercing pain in the shoulder and shunt tubing in the abdominal cavity.

[wanagers]

FINALLY!!!  I've been telling doctors about this pain for years, most of them listen, but NO ONE understood

[SarahSmith-ibqc]

Thank god for this video! I’ve been in agony with my shoulder and just under my diaphragm since my last shunt insertion!

[claudetteknight]

This has been me for the past 5 years. I’ve had all these pains my shoulder can be very painful to the point where I can’t even sleep. And stomach pains are just as bad. Stomach pains is a every day thing at the moment. And now I’m in Hospital and they’re still trying to diagnose it. It’s been three weeks of me being in here and my Doctor has just seen this video. I’m hoping that my neurosurgeon see this and helps me out. I’m sick of being in pain and missing my partner and children. And now I have a new grandchild at 7 weeks old and I’m not able to be there to spend these special moments with him.

Coming from New Zealand Gisborne.

[Kavikavikavikavijk]

I feel seen. As I lay in bed from this pain in my shoulder. It hurts so bad and yes, I have the pain in my abdomen as well.

[BLAB-itun]

As great as this information is, and as someone who experienced this type of shoulder pain before knowing it was shunt related, I wish Dr. Walker had clarified that the pain, though miserable, is not a sign of shunt malfunction. He implies this when saying the migratory pain does not mean a surgeon should automatically go in to address it, but even clearer would have been to say this is solely a pain management question and not a shunt function question. The pain, be it migratory, shoulders or stuck in one place, is a sensitivity and pain management issue. The shunt is still working and the pain is not a symptom of any damage to the brain or body, and thus the question is at what point does the pain make risking a surgical change to the shunt and thus perhaps the functioning of the hydrocephalus treatment worth it. If only moving the abdominal catheter is involved and no change to the one in the ventricles and therefore no change to the function of the system is involved then addressing the pain is likely worth it especially if the pain is debilitating to the point of being unable to walk or otherwise function day to day. Fortunately, so far, I have had only sporadic episodes of this intense pain and thus have not had to contemplate a surgical intervention.

[susanekuhn]

I had a VP shunt implanted 4/28/2022 and I have had migrating abdominal pain ever since which has been getting worse since 3/2023 when I had a colonoscopy which was relatively normal. My drain was put in by a general surgeon and he and I are going to explore solutions to this problem.

[snipesentertainment]

I told the doctor about the same pain and I got a battery of tests for the heart and arteries. I was also referred to a nuerosurgeon. Potentially having a shunt revision at 44 is a scary decision to make.

[krystalwesley]

This is what I feel. They explain tge pain I feel.

[freqeist]

the tube going into my perotenium always gives me excruciating pain after exercising but people say do something else but I do not want to
and the pain goes to my shoulder also

[mamadukemarmite]

Thanks you for this video! So helpful. I've been shunted for 37 years and experiencing mid pain just over my shunt scar moving to shoulder. Following up with neuro soon! ;)

[naziaimran]

I had vp shunt before. Now I have programmable shunt. I’ve beef having pain since 2 weeks. Worst shoulder pain, above my chest, neck & abdomen pain. The pains come & go. I’m sure it’s not blocked. I had the new shunt 10 years ago.

[joenauseef]

The shoulder and chest pain is why my shunt was removed. It was broke anyhow, no one knows how long, but when i couldn't barely move my arm, it had to go.

[petramajernikova]

I had my pain for 6 years, doctors gave up on finding the cause. I am sharing my journey on youtube ❤

[amazingmelagrace]

I know how all of you feel I’m experiencing the worst pain ever and I’m praying

[pandorajones]

i have 2 full size suit cases full of all my documents exrays MRIs(before shunt) and all the tests the pic lines and all the other stuff they did to me plus pics of the hose out the forehead from failed shunt from doctor telling if I did not do the MRI with my magnetic shunt, that I was refusing treatment, and a few days later was found at home not breathing husband came home to see me with tubes and wires because I was uncon. so when woke up I had no Idea where I was or how I got there. its nothing but a blank hole in my memory, very scary to this was back in 2016, so now family watches me close now...

[kiearaandrews]

Why is my shunt terminating in my pelvis?

[claudetteknight]

Can you see that it is painful when looking at stomach from the inside?
Need to know as I have had them look at it and no signs. But the pain that I have.

[carendiard]

I have been fighting with this for 2 years and cant find a dr that is willing to help.

[musicalchapter]

My mother needs help, is there anyone here that can refer a medical center that can help. She has migratory and abdominal pain. Also, her hydrocephalus is causing her to develop a sort of dementia and I don't know what to do. My family has been dismissed and looked over because no one understands the degeneration of her condition. APS didn't think that her case is worth investigating either. I have gone through all official channels and with no avail.