Shunt question

I've been having this pressure type headache lately- not constant but (pretty much) daily. My blood pressure is fine, I thought perhaps it was sinus issues but now am wondering if it has to do with my shunt...Anyone have any familiarity with this? I had a Dr tell me once that "you will know if your shunt is not working"- I don't even know what that is supposed to mean....

Hi Dana...it is so....oh good to see you...but I am sorry for the reason...the headaches...I donot have a shunt so I can't be of any help. I do wonder what the Doctor means...how are you supposed to know without some detailed signs to look for ? If all feels really out of the ordinary and you feel it is your shunt...call your Doctor...

Otherwise, I hope you have had a good summer...I moved again (hubs got transferred to PA)...sold both homes in Indianapolis and Florida and we moved...so summer has been trying to get settled and now find new Doctors...the dreaded ... wishing you a good day ~ Colleen

Dana,

I don't have a shunt either, but I do know one person that had trouble with theirs and it was upsetting her stomach and she was treated for a sinus infection. She started feeling like the sinus infection was coming back and had the stomach problem. I think that she even started vomiting. It may be best now to give your doctor a call and don't wait for the symptoms to get worse. You may just need an adjustment.

Take Care & God Bless,

~ Carol

Hi Dana...me again...I am going to share your post with our membership in order to get more exposure to it...due to the fact so many have shunts on this support site...wishing you a good day ~ Colleen

Dana I have had a shunt since August 2013. Yes it causes pressure headaches daily. Another doctor not my surgeon put me on gabapentin 300mgs. Diagnosed me with nerve damage. Good luck.

Hi Dana, I do have a shunt and headaches can mean problems but usually they are accompanied by nausea/vomiting, dizziness, and increased drowsiness. You should let your dr know about the headaches, though. My first shunt actually hurt and bothered me all the time. I cannot even tell where this one is on my head and while I still have headaches, they’re not as bad. Hope this helps, Rose

Hi Dana,

I had a shunt fitted as I had hydrocephalus and was totally in cuckoo land and dreaming weird dreams sleeping and other stuff going on for example ventriculitus and sepsis (bad times).

A year after my SAH my family saw I was sleeping and I was not the old me and I used to argue with Physios and cry when I felt bullied by them.

My husband was told by Physios "your wife will never walk again, have you thought of putting her in a home? cheeky so and so's. My hubby said "no way" phew !! so one shunt op and 4 years later I am still here. Do you stress yourself out if so try not to stress as my surgeon said stress is bad for us.

Also think happy thoughts and you will get there. I sing a lot and drive my family mad lol

Good luck and let us know how you get on. I am walking approx. 60 to 100 yards before my back aches.

Regards

Bess2u xx

Sorry, I meant I do have a shunt, lol, though I do have headaches too.

I had my shunt placed this past march. Everything was going fine, until about a month ago and I started getting these pressure headaches behind my right eye (exactly where my aneurysm is and the shunt is placed). I told the dr and he said I probably had a sinus infection. Unbelievable. I am back on Gabapentin because it became too uncomfortable for me. The pressure/pain feels somewhat relieved but I can still feel something - only mildly uncomfortable now. I go back for my follow up angiogram on Sept 5th so we’ll see…

Hi Dana, I have had my shunt for about 7 years. I do not get daily headaches, I do get headaches though. I was told the same thing about knowing if I had a problem. I recently had some issues for about 2 weeks my head felt full, I was having a hard time hearing normally, headaches and pressure so I went to the doctor thinking I had a sinus infection. Well, no infection but it was related to seasonal allergies and a few days on steroids and nasal spray. I am sorry I don’t have an answer to help you. Your doctor should be able to do a CT to make sure it is working properly. My doctor is pretty good about it when I go in with a symptom I am not sure about and she has sent me for a CT in the past. If yours is adjustable they may need to make an adjustment. Good luck, I hope you get some relief.

Hello Dana,

I am 5.5 years post SAH. My shunt was put in as a last resort after 3 weeks in the hospital. Pre-shunt, family says I was just acting/talking crazy. Shunt stopped that and I was able to go home in a few days. I had headaches but was determined to not live with these. Positive thoughts go a long, long way. Although my sense of smell was diminished, I tried aromatherapy and it worked for me for the headaches. A couple years later I developed what my neurologist determined was ocular migraines. No pain, just weird visual happenings. Doc suggested I take magnesium so I do. I still get those weird visuals occasionally.

As others have suggested - call your doctor. I saw both my neurosurgeon and the neurologist whom my surgeon suggested.

Hi Dana,

I also have a shunt. I was also informed that if I developed a headache, to have the shunt checked, as it may have a problem. However, the doctor also informed me that if I did not have any problems with the shunt within the first five years, likely, I may never. In fact, on my last check-up, I was told that probably the shunt is really no longer needed, as the brain fluid is probably draining correctly now. However, unless there would be a problem, which is thought to highly unlikely, it will not be removed.

I was led to believe not only would I have a headache, I might also have coordination problems. I used to experience pressure in the shunt on the side of the head, where you can feel it. So, I did research by looking on the internet for information on shunt disorders. I soon discovered, I really had nothing like any symptoms described. I find that there is a psychological side to healing, which is just as significant as the injury itself. A Neurosurgeon had also told me that.

Check with your physician and ask questions. You are your best advocate. If you find everything is as it should be, my advice is to trust that advice. I think it is so easy to get freaked with anything that seems unusual, and goodness knows this entire experience is freaky, to say the least. I am a person of great faith and it has been tested many times. However, I have learned to exercise that faith and apply it to the doctors and to myself, as well. When I relax in allowing that to guide the day, I find I can do much.

Hi Dana, I had a "PED" implanted in Jan. 2012. It did not work as it should have. Six months later I had a second implant on June 8, 2012. I was told by my surgeon that I would have headaches and I did. My Annie was in the pocket where all the nerves and blood supply goes the the eye and face. Mine was on the left side. Once in a while I get a headache and Ocular migraine but not often. My second implant was put inside the first one.

I am wishing you the best. Keep at your Doctor and do your homework. Search the internet. There is information, search the medical hospitals that perform this type of surgeries. Gain as much information as you can!

I have had a shunt for two years. I get headaches every once in a while. But my neck also gets sore where I can feel the cord. When the doctor says you will know when there’s a problem, I made him explain. He said I wouldn’t be able to walk. You’d be floored. It’s not, sadly, just a headache. I feel forever changed, but not always for the worse if that makes any sense. Even though I do hate having a shunt! Hope your headaches subside…

Hi Dana,

I'm going on 5 years, SAH, coiled, and shunt due to hydrocephalus. I'm thankful to be under the care of an amazing Neurologist who specializes in treating headaches/pain. It took a lot of tweaking, but my headaches are mostly under control due to a combination of meds. (Verapamil, sertraline, and then protriptylin was the last one added that did the trick) I hate taking all the meds, but thankful to be here. Head pain has never completely gone away....... especially at night when I go to lay down. Changes in weather always triggers pain as well, or if I physically over exert myself. I call it head pain, as headaches are a different feel. I occasionally take aleve if headaches escalate, which is maybe one/two times a month. As for the head pain, my Dr. indicated it most likely will never completely go away. He said if my shunt malfunctions I will know it. Would become dizzy, and nausea/vomiting. Sometimes I just need to slow down and have come to the realization I can't do everything anymore. Poor diet and lack of sleep ALWAYS brings me headaches, so the number one thing is to take care of yourself. I call the Dr. if my headaches do not go away after 4 days. Twice they prescribed a zip pack?? (I think that's what it's called) And it zapped my headaches away in time. Hope that helps!!!!

I was also told that I'd know when my shunt stops functioning! I didn't understand that at all, given that I'd had a SAH (stented 4 yrs 3 mos ago), clipping of 2nd aneurysm (3 months later), and shunt for hydrocephalus (1 month after that). EVERYTHING was new, there was no way for me to distinguish or determine the source of various pains and symptoms. However, one significant symptom that almost completely went away after I got the shunt was what I refer to as "the world going silent", accompanied by a full feeling in my head, slight dizziness and/or a vague nauseous feeling.

I was also told that I would notice inflammation on my abdomen if the lower part of the catheter "went bad". The catheter on my head & the programmable valve have never been a problem; working around them is 2nd nature now. The lower catheter end used to poke me a lot, which was a creepy feeling because I couldn't tell what it was poking. Sometimes it would make me twitch, but grinding my fist into my abdomen would re-position it. As promised, scar tissue formed around the tube, which I believe has kept the whole thing generally more stable, and hence, less pokey.

Here is my fun theory on what's going on when, on occasion, the world goes briefly silent: a disgusting ball of crust and snot has blocked some part of the tube, causing pressure to build from above (the world goes silent) to the point that the offending thing is finally expelled into the peritoneal cavity. Tada! Kinda like when my boyfriend clears my bathtub drain with compressed air!

Until last year, my shunt was being watched by my neurosurgeons since they were already checking their own work. Now that I won't be seeing them for 3 years, I'll be seeing a shunt specialist every year or two, starting this November. I'm looking forward to establishing the relationship with him, and will try to report back anything I learn.

How long have you had your shunt?

Hi! I had a shunt placed as well, how you know if it’s working or not is - you will feel dryness when the amount of liquid that is passing through it is not right, I guess what he meant is that you will “feel” it. I do have headaches on daily basis as well, not sure if it’s related to the shunt placement… I was sent to a neurologist and she seems to think it’s “migraines” which is a totally separate issue…

Hi Dana, my shunt was put in, in 2005 and fortunately have not had any headaches or other problems.

when I have asked Doctor's the question 'what would happen if my shut blocked' they all seemed to gloss over the question and would say 'you will know when it blocks, you will get a severe headache and should go to hospital immediately', I don't actually think they wanted to tell me the truth, and that is that it is life threatening, it's as if they don't want to tell me how bad it could be, so then they change the subject.

I had to push them to talk about it.

It would seem that it is a global stock standard answer, I want to know the truth.

I was told that the shunt could not be taken out even if it is not needed any longer.

Like Laraine Wessels below I was gaga pre shunt (so I was told) but once the shunt was put in and the pressure relieved from my brain, I also came to, previous to that the Doctors and my family were also taking nursing homes at aged 54.

I have been living at home by myself since 2007.

My philosophy is 'every day is a bonus'

If anyone is experiencing headaches do something about it, and for goodness sake don't take no for an answer if the doctors say don't worry, you know you body better then anyone, trust you instincts.

sending love

Marylou Byrnes Adelaide, Australia

What the doctor means is that you will have confusion, possibly vision problems. Basically you will be "off" if your shunt is not working. You are someone that is close to you will know something is not "right". The pressure headache could be sinus related, but I would check with your neuro doc to be on the safe side.

Dana, when I get skull pressure, my first action is to go to my Rolfer. She has been able to release whatever caused it. I think something clamped the CSF flow and she unclamped it. I don't know if that is an option for you, but you might keep it in mind as one option in your collection. I'm guessing that some Rolfers are more able to access cerebral stuckness than others and I could ask mine for a referal if you are interested.