Aa
Aa
A
A
A
Close
Avatar universal

Hydrocephalus/VP shunt problems

I was diagnosed with hydrocephalus a bit later in life than most patients with it, I was diagnosed at age 12 (1999). Last year, I became pregnant unknowingly which increased my ICP, and a VP shunt was placed. As of lately (the last two months) I've had excruciating headaches.. every day, and numerous ER visits later, only to be diagnosed with a migrane. However, the last ER visit I was finally given something else, that some patients with VP shunts have 'shunt headaches'. I've never heard of this, and never had anyone else tell me anything about a 'shunt headache'. Has anyone ever experienced anything like this? I've been told to look into pain management but have no insurance, so I think I'm out of luck until I can get some.. I'm debating on having the entire shunt removed. Could this even be an option? I just really need some help with this, I can't keep living in pain like this.
113 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I am 68 and have had a shunt since January 2015.  I experience problems every time I go into a store with fluorescent lighting.  I feel very distracted and have some problems with my vision.  I have a hard time focusing on my task.  Those symptoms clear up when I leave the store.  I have mentioned this to my doctors but they have no suggestion as to why this is happening to me.

Good luck with your son.  I think the lights may be affecting him like they do me.
Helpful - 0
Avatar universal
Same issue that my father is also experiencing, he was undergone a vp shunt operation and he always feel a headache at the right part of the head, and he is also experiencing a problem in his vision like double vision.
Helpful - 0
Avatar universal
I had a shunt put in 1998 after 10 years of pre diagonas of post mentalpausel mirgains. A bladder had form over the left, right and frontal pretital.  Two years ago I returned to my N/S at the University Hosp andhe stated that replacing the shunt would be too dangerous and only did a ct. The head spasm are over my right ear and now progressing beyond to the frontal pretial. My eye sight even after surgery cateract is not good and even though I did experience memomy lost and short term memomy, the dizzy and weakness in my lower body is becoming more evident.  I reading specialist, 15 years, and knowing I have stress with the students and Admin. The spasms and pain down the whole rigth side is affecting me. When the spasms they are continious lansting for several minutes one right after another. I am loosing sleep due to the pressure on this right side and it consumes me. Funny most  complain of headaches, I have just started to have occuring head and neck tightness but not the sever headpain I had before the surgery. Please excuse my spelling issues. You mentioned Dr Wiliams inPhoneix, I would like to make an apposintment with him for an evaluation. I lived and taught i PhX for 9 years and had a great hemotologist,Cancer at the Piper Cancer Clinic, Dr. Halapolota ,another blessing from God! I am now 72 and take chemo everyday but feel great, but my head and neck doesn't. I hope Ruby you will read my plight with the Shunt, the nero surgen is not responsive here in New Orleans. Yes, I do believe in God, just gave me too much to deal with.
Helpful - 0
Avatar universal
Would you please tell me more.  My mother (age 87) just had the shunt put in last week and she is having severe stabbing abdominal pains.  The docs have done Ultrasounds, CT scans and xrays but can't find anything wrong.  
Helpful - 0
Avatar universal
I am 51 and had a shunt put in 9/14 for my diagnosis of hydrocephalus with aqua duct obstruction.  I have some improvements with the shunt (VP type) like my stuttering and balance are better, but my memory has not changed.  I was tested in a memory clinic last January and had the test after the shunt placement in March and found no change....a bit disappointing.  The thing I am concerned with is I continue to have headaches and migraines, ringing in my ears, pain from the shunt in my head and in my stomach areas. I have also developed vertigo and I have constant light body tremors - that when I am tired are more pronounced.  My neurologist was told of all this and just wanted to put me on Tropromax for headache/migraine prevention.  I didn't take immediately because I went back to my Neurosurgeon to let them know my issues and I was concerned that the medication the other doctor prescribed also help in lowering the CF level even more.  I had been told by the neurosurgeon after going to hospital for 2nd time about this that shunt is in place and working and they felt I may have another issue....Meniere's Disease and I should go see an ENT doctor, which I did.  I never really got an answer from them to what they thought may be my issue and he didn't say I didn't have Meniere's disease.  I still am frustrated.  I went back to the neurologist and he again wanted me to take the medication he prescribed, so I did.  I was on 25 mg. for 1 week and it was horrible.  My body tremors were much more pronounced (like a drug addict coming off drugs) and I had wicked insomnia and didn't get to bed before 3 am!  I have kids that go to school and I have to be up by 6:30 am so this was definitely not a good thing.  I called the doctor after a week and he told me not to take it anymore.  It didn't help me at all, but I still have the issues and not sure what my next step should be.  The body tremors are very concerning to me.  I didn't have them prior to having the shunt put in and I was wondering if anyone else has this issue and if you have has a doctor or a homeopathic type doctor would be the way to go.  Or are the body tremors that I am experiencing a sign of something more serious I need to go back to the Neurosurgeon.  This along with the other symptoms are telling me something is not right and I don't think that just taking a pill is going to fix it.  I would like if someone who might have experienced these symptoms let me know possibly what they did, if they still have the issues, and/or a possible direction to steer in.  I need ideas.  I do all kinds of research and I haven't found the body tremor issue with others.  Anyone out there with experience or heard if this please let me know.  Thanks!
Helpful - 0
Avatar universal
Hi there.. My daughter has had hydrocephalus since she was 3 1/2 weeks old and has had a vp shunt since... She doesn't particularly like going to shopping centers because of the Fluor lights. She said they make her feel funny and sketchy.. She is nearly 21 and still avoids shopping centers.

Kerrysoulsister
Helpful - 0
Avatar universal
My brother is 81. He has had a shunt placed and removed within 8 weeks.
We are waiting to find out if he can recover.  There afe other procedures they can do but who knows what they will be.  The brain shrunk slightly.  Now the fluid will build.....
Helpful - 0
Avatar universal
My daughter keeps having headache and vomiting sin c e her last surgery 1/15/15. pain management or malfunction?
Helpful - 0
Avatar universal
Hello everyone,
My daughter just had a revision about 2 weeks ago at age 13. Her las shunt was done at 8 months old and after 12 years she start getting massive headaches and even vomiting of pain after the second day I knew she would need to be taking to ER for shunt revision. When we where in the ER she started being lethargic and her eyes where almost closed. She had surgery and 2days send home. After surgery she has neck pain and not sure if she just has it from surgery and has nots of stress or if something else is wrong..?
Helpful - 0
Avatar universal
this is literally my life...i just started experiencing really bad tightness and what feels like burning just went to the hospital they saw nothing on the mdi or shunt scans but kept me for observation for 2 nights then sent me home because my neurosurgeon is on vacation and they want me to see him because they don't think its anything major is there  any home remedy because also no type of medicine is helping. Please help
Helpful - 0
Avatar universal
I am about to turn 58 and have recently been diagnosed with hydrocephalus and early onset ischemic brain disease. I am due to see my neurologist in about 6 weeks and it is likely that he will suggest putting a shunt in. Having read the posts here I am a bit wary of going that route and would like to explore other options. Any form of surgery would be tricky given the ischemic brain disease so I could potentially end up worse off.

What other options would people here recommend?
Helpful - 0
Avatar universal
Wow I know exactly how you feel. I was diagnosed a few months ago at 59 years of age. I was complaining of dizzy spells so they did mri and found out I have hydrocephalus and meningioma
. I lost a son at 17 years old do to brain tumor so even though they said it was 95 percent chance non cancerous I insisted on radiation cause was told it was no operable . I still haven't had anything done about hydrocephalus but should have another mri in 3 months really scared. Doctors act like all u have to do is wait and see. If I tell them I'm dizzy pressure in ears they say it's not from hydrocephalus when I know it is.
Helpful - 0
10117210 tn?1407894673
i had a shunt put in as a child n i  ant came back to get it checked out im 28 now n i ant been having no problems i dont think should i go get a check up on it
Helpful - 0
Avatar universal
I have been having really bad headaches for the last year now consistently. I have had a VP shunt for the last year. I had a programmable shunt until Dec 2013, then the replaced to see if that would solve the problem, it made it worse. I have worse headaches with the new shunt now and have lost both my jobs because I can barely get out of the house anymore because I am always so sick. I have pain and numbness on my shunt side of my head, numbness in my face and hands, feet and knees, have collapsed, double vision, trouble speaking,  and get super sick during these headaches that last any where from 8-40 hours long. I get pain along the tubing site and cant lay down.  I am convinced that they are shunt headaches and my neurosurgeon thinks im nuts and thinks im fine and thinks its just migraines. Its not.  Thoughts?
Helpful - 0
8325461 tn?1397657270
Yes, I have the same problem, I have a magnetic type shunt and that just means it needs adjusting, either it's draining too much fluid or not enough, you'll have to see your Neurologist, or Surgeon to find out if your shunt is plugged up, they will do a CT Scan or an MRI
Helpful - 0
8325461 tn?1397657270
it has to be replaced with another one, but you can't go without one, you are correct
Helpful - 0
8325461 tn?1397657270
Hi Briah, I know how you feel, I have constant headaches due to my shunt as well, they are excruciating like you say, I take Tylenol on a regular basis, but my body has become accustom to the pills they don't work anymore, I just had a shunt patency test done yesterday and the results were normal the shunt is working fine, although I do have an adjustable shunt I think the setting is too high and needs to be turned down, which means another trip to the Dr. good luck with your shunt, I wish there was a different way to deal with hydrocephalus, take care
Helpful - 0
Avatar universal
the answer is yes. weather is a factor to. I have a shunt for 11 years now & will have to be replaced soon. the surgery left me with high sensitivity to flashing lights & seizures .flashing  lights can make you have seizures and some noise as well.I hope this helps you.
Helpful - 0
6143586 tn?1379300560
That is exactly what happened to me! I am having terrible Vp shunt issues. what our parents did was neglect and put us in danger. I have thought about consulting an attorney against my own mother. My shunt was a result of parental abuse. I know your pain. I was told I shouldve had many shunt series done and the resection:( Good parents are priceless! omg   Aimee K.
Helpful - 0
Avatar universal
Dont know where you are located but just google Dr William Smith neurosurgeon and you will be amazed. He did my surgery and after reading all these posts i feel very lucky.He said headaches like this are a sign the shunt is blocked or plugged up. I would think any neurologist should know that.
Helpful - 0
Avatar universal
Dont know where you are located but just google Dr William Smith neurosurgeon and you will be amazed. He did my surgery and after reading all these posts i feel very lucky. He has pioneered over 200 procedures and patented many devices a swell. He is on call to the Royal Family in Saudi but he is the friendliest, nicest and down to earth man I know. GREAT surgeon...worth a trip to NV or AZ
Helpful - 0
Avatar universal
Hi  luv.
I read when you go into stores you get a headache. Do you wear sunglasses or have shaded glasses to protect your eyes from the neon lights. The neonlights are very hard on the eyes, which in turn can cause headaches. Have you gotten your urine tested for bladder infections ? Did they keep it long enough to be sure that you don't have a bladder infection that cannot be tested by just with  a paper?
I have never heard of burning stoels  , are they hard ? If they are too hard get Colon Clean , it is a homeopathic remedy which is guaranteed to get your stoels to the proper consistency and make your life so much more pleasant.  Have you been checked for Hemoroids?
God Bless and take care.
Threewheelmobile
Helpful - 0
Avatar universal
I'm not sure about the hot urine or stool part but the gait problems and headache pain can definitely be caused from the shunt.
Helpful - 0
Avatar universal
Did you have the programmable shunt put in?  If so it could be the source of your problems.  My sister had it put in for her pseudo tumor cerebri and she had to have it redone 4 times in one year and now she just had them take it out altogether.  Since getting it out she found out that there is a recall on that shunt and it totally explains her problems that she was having.  She definitely had more problems with the shunt than without.
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease