 Photo: Medtronic Strata Valve Choosing to insert a shunt of any kind can be a big decision for hydrocephalus sufferers. As with anything, there are both pros and cons to living with a foreign object inside your head; read more to see what I have experienced with my first VP shunt. On March 21st, 2018 I got my first programmable VP shunt inserted. Since then, I have learned a lot about living with a shunt: both what I was warned about by my Neuro Surgery Team and what I discovered on my own by trial, plus a few other things that I picked up from wonderful hydrocephalus support groups. I hope that all of these things will help you whether you are new to shunt life or new to hydrocephalus itself.
...After my first surgery - an endoscopic third ventriculostomy (ETV) - in early 2016, my hydrocephalus symptoms returned and we were once again faced with possible forms of treatment. My neurosurgeon, Dr. Zhang, seemed to think that the ETV was not blocked. Rather, I simply needed to try another kind of treatment to assess the cause of the increased build up. So, under his advice, we decided to insert a VP shunt.
Before surgery, my family and I really knew little about shunt life. We were informed of the associated risks, such as infection and blockage, but we did not know quite what we were getting into. The surgery itself was like any other. It required lots of pain meds and a somewhat extended recovery time (see the full story of my shunt placement here). However, it was what I learned throughout this recovery that made an impression. ...First off, I greatly underestimated the possible pain caused by having a foreign object newly placed in your body. As I elected for a VP shunt, my tube runs all the way from my head into the peritoneal cavity (the inside of your abdominal area). And boy, can that tube poke every nerve all the way down!
The first few weeks, I would end up balling my eyes out and immobile as I desperately attempted to avoid irritating the tubing. It seemed as though even little movements would shift the tube and cause intensely sharp pain. In fact, even the inevitable post-surgery abdominal gas seemed to make the situation worse. At one point I ended up in the emergency room, certain that something was terribly wrong. My surgery nurse had warned me that there might be some pain as my body adjusted, but I could not fathom how the shunt could be this painful if there wasn't something punctured! To my complete astonishment, the imaging came back normal and I was assured that my new shunt was functioning just as expected. So, we went home feeling better but slightly dismayed and I decided to hunker down for more discomfort. Thankfully, the next several weeks proved that my body could indeed adjust and, believe me, yours can too! As my surgery nurse eventually explained it: when the body first senses a foreign object, the brain triggers signals to the rest of your body alerting it to what it considers an intruder - in this case, the shunt. Then, scar tissue eventually forms around the tube so that it moves less frequently. As the body realizes that this intruder is "here to stay", the brain sends less and less of these pain signals until the body at last recognizes the foreign object as part of the system. Some things that I have noticed affect my shunt:
...I know, it sounds a little daunting; however, I have experienced such relief since the shunt was placed a few months ago! Yes, I still have a little pain now and then when I toss-and-turn a little too much while sleeping. And gas continues to complicate the issue as it seems to press the shunt into nearby nerves, so I have given up once-beloved fast food, but the pressure relieved by the shunt has made life with hydrocephalus much more bearable.
Many of my initial symptoms - like urinary issues, constant pressure headaches, and the well-known hydrocephalus shuffle - have all dissipated with time. So, while all the little caveats make living with a shunt something that surely requires some getting used to, after a while it becomes easier to ignore the little quirks and realize that your quality of life has improved enough to make it well-worth the trouble. In hindsight, it would have been nice to have this kind of information before the actual surgery, but sometimes we learn by living through it ourselves. Everyone has their own treatment plan that works and I encourage you all to sufficiently explore your personal options before making any decisions. As always, please read our site disclaimer and talk to your doctors before misusing available information to self-treat. I wish you all the best on your hydrocephalus adventures. I love to hear fellow hydrocephalus stories, so please feel free to share your own below and gain built-in support! Love from a fellow hydro-head case, Dani
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48 Comments
7/13/2018 07:14:34 am
Thanks for sharing so much information about the specifics of how the shunt has affected your life. I’m glad your body “grows into it” while the shunt’s literally growing into your body. You’re a brave little toaster! Lots of love ❤️ 7/15/2018 08:15:01 am
Thank you Uncle John! It means so much to me that you read my posts. Love you too <3
Brenda park
11/19/2019 09:53:14 am
Thank you. My 84 year old mother needs one and I’m so fearful of going they this. Thank you for sharing! 12/11/2019 05:55:39 pm
You're welcome Brenda and thank you so much for reading! I am sorry that it took me so long to respond. Did your mom have surgery yet? How are you doing with everything?
Elaine G
7/31/2020 01:35:05 pm
Really interested about the 84 year old mom that had a shunt placement.
Thank you so much. I dont know what to do. I have the bladder urgency and shuffle but no headaches
8/2/2020 11:33:40 am
Na 10/2/2020 05:55:57 am
Would I do it again? That is a good question. Honestly, I would. There may not be a clear decision as to whether I needed it in the first place, but medical professionals believe it is serving a purpose and that matters. If all the pain of having a shunt is balanced by it saving my life, it's worth the headache! (Pun intended ;) )
Becky Griffin
4/9/2019 04:24:31 pm
Enjoyed reading your article. I had a shunt inserted on 3/18/19. I've been doing really great until this past week and have begun having terrible headaches, like extreme pressure on my face. I thought at first maybe it was a sinus infection but an x-ray showed my sinus cavities all clear. I am going tomorrow to have a Cat-Scan to see if we can determine what is causing the headaches. 4/25/2019 08:32:37 pm
Thank you so much for reading! It is exciting to see that a fellow shuntee found my blog and it is helpful in some measure. I know that there is a lot that the doctors don't inform us of before they insert them so it's nice to have our own community to ask questions. I hope that your CT comes back with helpful news!
Zanetta Moore
2/24/2020 06:57:30 pm
Question— my daughter recently had her shunt placement. She was just a few weeks of being 1 when we had the surgery. I recently heard from a lady that works with small children that all the parents she knows have all claimed that They are more emotional & moody on ‘windy’ days. Would you say that could be fairly accurate?? 5/15/2020 02:21:29 pm
Hello! I am so sorry that my response is so late, but I hope that my answer can help. I would say that yes, I can definitely attest to the sensitivity. In my personal experience, any kind of change in barometric pressure can cause an increase in both neurological symptoms and sensitivity of the shunt itself. I do not believe that it changes the function, but I think the area surrounding my shunt burns more on stormy days and I tend to have more related mood swings. However, please note that I also have dysautonomia and it tends to react to changes in my hydrocephalus. At least that is what my most recent doctor believes. Hope your daughter is doing well!
Karina
5/15/2020 01:49:11 pm
Hi Danielle. Our school is writing a Section 504 Plan for a student with a VP shunt and one of the accommodations that her physician recommended was for her to be able to keep a water bottle with her at all times. I haven't read anything about needing frequent access to water more than anyone without a VP shunt. Do you have any links or other info. about this? I couldn't find any info regarding this in my search.. 5/15/2020 02:29:16 pm
Hello there! Unfortunately, I have not done the research related to this. It honestly would depend on what kind of condition required the VP shunt to be placed. For me, with hydrocephalus, water is very important because proper hydration helps regulate production of spinal fluid (If I remember correctly from what I have been told by doctors). In general, water is important for many medical conditions. Between my hydrocephalus and dysautonomia, which my doctor says tend to irritate each other, I have been advised to drink 90 to 100 ounces of water per day. This said, I would aim your research to find the link between this student's personal medical condition and dehydration itself. Patients like myself with neurological conditions like hydrocephalus or dysautonomia are often prone to becoming dehydrated, sometimes to a dangerous level. For instance, before my shunt was placed, I would have numerous syncope episodes if I spent an extended length of time away from my ever-present water bottle.
Mary
6/23/2020 03:37:08 am
This is 100% thing, I always needed access to water during school years. Dont really know why from the science side but oh I know from experience I need 2 litres a water a day and having it next to me was always needed as a kid just to remind me and then it was just second nature to sip away 6/23/2020 08:05:20 am
I know what you mean; It has become very second nature indeed! Now, I just pack up my half gallon jug wherever we go! Thanks for confirming my theory from another perspective!
Mary
6/23/2020 03:33:41 am
I just came across this website and thank you as shunt VIP too. its interesting hearing other life experiences with shunts ive had mine for 29 years this month. Feel free to keep ask me any questions from a veteran as such ive had mine my whole life minus a couple of weeks. 6/23/2020 08:09:06 am
You're welcome and thank you for taking the time to explore my little blog! I keep meaning to write more posts about life with a shunt and all but I still need to squirrel away the time. It has been so rewarding talking to others about their lives affected by similar experiences! I would love to pick your more experienced brain. Please let me know if you would be interested in doing a collaborative piece! Also, congrats on having your shunt for so long! Any revisions needed or did you get super lucky?
Nagy
7/16/2020 06:45:58 am
Thank you for the article, it helped a lot as some of the symptoms were not explained that clearly and it was concerning to have those feelings after the surgery. Thank you and wish you all the best 7/31/2020 02:00:12 pm
You're welcome! I am just glad that this little blog has helped a few people! I hope your surgery was successful and you are recovering well. Please let me know if you have any questions. I know I was very unsure about having a new shunt and still am. I highly recommend the hydrocephalus Facebook groups if you need some shuntees to talk to. They have answered tons of my questions.
Alex
7/28/2020 07:32:03 pm
Hello Danielle 7/31/2020 02:06:54 pm
Hello Alex! 7/31/2020 02:14:29 pm
Elaine G,
Cliff
8/9/2020 12:27:09 pm
Danielle, 10/2/2020 06:08:26 am
Cliff, I am so sorry that it took so long for me to respond! Unfortunately, my health conditions often cause me to leave my work and hobbies behind for months at a time as I struggle to cope. Your story of a 26-year working shunt is so inspiring! I can only hope that this shunt will last me a lifetime! I hope that your revision went well and that you are healing quickly! 11/2/2020 12:33:16 pm
My vp shunt was inserted after a sub-arachnoid hemmorage 22 years ago, it still hurts now and always gave me the feeling of not being human anymore. 11/5/2020 07:26:46 am
Martin,
Jason
11/5/2020 09:37:03 pm
Danielle, 3/1/2021 10:47:04 am
Jason,
Kristi
2/24/2021 09:56:46 pm
Thank you so much for your blog and sharing your experience. My father had a shunt placed this week after suffering a basal ganglia hemorrhage following an initial stroke and subsequent carotid artery stent placement. Because of the pandemic and hospital policies on visitation, communication between multiple family members and physicians is limited. Most of the information I receive is coming second hand from my step mom and I don’t always have an opportunity to ask the questions that I have. A question popped into my head tonight about wearing hats (silly in the grand scheme of things but my Dad does love his hats), so that is how I came across your blog. I’m also curious as to what your post op experience was like .. how long were you in the hospital, how frequent were scans done to ensure everything was working correctly, etc. My dad was moved to a specialty hospital yesterday, just 4 days after the shunt placement (after three weeks of being in the Neuro ICU before the shunt surgery). This facility specializes in respiratory care, as he is being weaned from a vent and tracheotomy. But am most concerned about him neurologically. A week ago he was fighting for his life and now that he is no longer hooked up to constant monitors and no longer has a neurosurgeon right down the hall at one of the best hospitals in America, I’m a little nervous. I know this is a good thing, but still nervous! I have so many more questions but my hat curiosity was a great place to start. I will check out some of the groups on Facebook as well. I would love to hear an update on how you are doing. Thanks again for sharing your story! 3/1/2021 11:05:33 am
Kristi,
martn joseph fox
4/7/2021 03:09:01 pm
Im a 57 year old man who had a vp when i was 34 (subarachnoid bleed) the nuero team at salford said about a year later i needed another shunt, 2 seemed abit daunting. 4/27/2021 07:26:49 pm
Hello Martin,
Barbara Norden
7/21/2021 09:02:02 am
My friend had 2 VP shunts fitted in the 1970s when he was a child.. He now gets pain in his side which is probably the tubing. The hospital suggested an MRI scan but then refused it because the type of shunt he has is not known. One type has a magnet, and that would put him at serious risk in an MRI scan. 7/30/2021 08:19:40 am
Hello Barbara!
Gerald
12/24/2021 10:35:24 am
Thank you so much Danielle Your post and comments are so helpful It has been a slow educational road to understand all the issues with NPH In March 2021 my wife (83) had 2d COVID shot and that evening suffered 3 seisures (s p) Hospital did MRI but because of COVID very poor info from Doctors and staff (extreme limited visiting hrs) did not understand wife had NPH and needed shunt Mild short time memory had started to be a problem before hospital visit 3/26/2022 02:29:17 pm
Gerald,
Mary Heerema
1/1/2022 06:54:34 pm
I would like to know the names of Facebook groups dealing with living with a shunt. Thank you very much for your compassion and knowlege. 3/26/2022 02:41:40 pm
Mary,
Joe
5/24/2022 05:01:58 pm
I too have a VP shunt. Setting 2.0. I’m dizzy and lightheaded all the time. But I made a better than full recovery from my 23 surgery TBI. I haven't ever let the injury keep me down or the horrible feeling my shunt gives me 1/30/2023 05:00:19 am
Joe,
Dave Turpin
6/10/2022 12:34:16 pm
Hello Danielle; I had a tumor removed 1-96 , non cancer, frontal lob, left side, I retired on November 2002, medical, memory was low then, aircraft QC inspector, Boeing aircraft, 2019 started having problem with memory again and getting weak, started seeing or trying to see doctors in 2020, but covid stopped that, July 2020 I was sick and they cancelled a MRI appointment, I was so sick that I kept falling out of bed paramedics had to come over and get me back in bed, at least 50 times or so it seems, November 2020 I got a MRI of the brain, but no read out or doing something about it, it should that I had hydrocephalus, It took my wife doing calling to my Neurologist to get something done, neurologist called them and told them if they didn't put a shunt in that I would soon die, this was December of 2020, a VP shunt was put in January of 2021, it was great, my recovery went fast, I could work on my hot rod for about 4 hour with water in August of 2021, but January of 2022 my energize level went down with dizzy spells, even after taking my Vimpat, on March of 2022, a cat scan was done no problems, EKG done on heart no problems, will I be weak and dizzy the rest of my life? I am 72, I am trying to get my life back to normal after a year and half. I am going to try and work on my hot rod, with breaks and water, I have to do something not do anything. Are there any one else out there having these problems? 1/30/2023 05:07:00 am
Dave,
Gail Platt
7/29/2022 03:43:50 am
Dani, hoping you are a woman and can relate to this. 1/30/2023 05:12:14 am
Gail,
Tonia
11/28/2022 05:02:25 pm
I'm very grateful for your detailed descriptions. My adult son is not very verbal, so it can drive me to despair not knowing where he is hurting. I definitely know the drop in barometric pressure causes him head pain. He also has a spinal rod. I also had a spinal surgery and have spinal arthritis and stenosis. We often hurt at the same time. 1/30/2023 05:16:15 am
Tonia,
Rick
2/9/2023 12:56:15 pm
Hello Dani, 2/10/2023 11:10:16 am
Rick, Your comment will be posted after it is approved.
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