Hydrocephalus: Anyone had a shunt?

Hi @ameena and welcome to Mayo Clinic Connect. I'd like to invite @thegoodwife @pedie @joanmahon @david33 @alicein_wonderland and @jeancary into this discussion to share their experiences with having a shunt placed to manage the draining of hydrocephalus.

While we wait for others to join, Ameena, you may be interested in reading this discussion:
- NPH (normal pressure hydrocephalus) https://connect.mayoclinic.org/discussion/nph/

What symptoms does your husband experience?

I had Hydrocephalus caused by Arnold Chiari Syndrome. I had a Shunt placed to relieve the pressure. That was in 1976 and it was WELL WORTH My Hair being Shaved. It did grow back! Imagine the Technology that has been invented since!

My brother had a shunt implanted as an infant back in 1965, and he’s still alive today!

My son has hydrocephalus due to a motorcycle accident last year. We have consulted 5 different neurologists/neurosurgeons and each of them agree that if he is not having any issues/problems and we don't see any decline, to leave well enough alone. So far, so good - in fact, his last scan showed it had decreased some.

@kimfeist I'm so glad to hear your son seems better hope this continues for you

Sorry for what you are going through. But a shunt is not so bad. I’ve had a cerebrospinal-peritoneal shunt to relieve hydrocephalus for 12 years, and no problems. No more headaches - YAY!

What kind of headaches do you have? My husband has terrible migraines caused by weather, usually thunderstorms and other than strong narcotic medicines there no treatment has been offered. He has has brain scans that found nothing. I don't think he has had a spinal tap.

I had an ETV 5 years ago for my NPH. Recently my bowel and bladder incontinence has worsened. My urologist wants me to try Medtronic's InterStim therapy. Is this surgical procedure worth it during the COVID pandemic? What has been your experience with this therapy? Have other therapies worked for you? Thank you.

I had a one week trial of InterStim several years ago. The procedure was done in my urologist's office but if I were to have it permanently installed I would have had to go to the hospital. I personally did not like the feeling of the stimulation. I also have problems with my spinal cord and I could foresee needing MRIs of my lower spine in which case I would have had to have the InterStim removed. My bladder issues have continued to worsen but not so much that I want something implanted. I have to self catheterize 4 to 5 times a day because I cannot completely empty my bladder. I have urge incontinence and cannot always get to the bathroom in time. I am 76 and retired and don't need to be out of my house for long periods of time and I manage with cathing at home and wearing pads 24/7. It's not ideal but I've gotten used to it. I do get tired of having to catherterize but I am managing for now. My bowel problems are mainly constipation and that is manageable most of the time with Benefiber and Miralax. I hope you find a solution that works for you.

Did your husband have any improvement following the lumbar puncture? I've heard that if they draw some spinal fluid out you may (or may not) have temporary improvement. If improvement occurs that is an indication that a shunt may fix the problems. I guess it would also indicate that there is Normal Pressure Hydrocephalus causing your symptoms.