I was thrilled to find this site. My daughter Bethany, who has hydrocephalus due to a dandy walker cyst is having these same pains in her abdomen. Originally she only had pain every now and then on the right side. She had a shunt revision in February and the pains have intensified and have moved to the left side as well, radiating across the abdominal area and around her belly button. Her primary doctor has had ultrasounds done to check her gall bladder and appendix as well as X-rays. They have all been normal.
This is her second revision. Her last was at 5 years of age. She is now 28. When she eats her stomach hurts worse. She is not sleeping at night because of the pain. She also has to pee every hour. Her primary doctor gave her Zoloft said she is depressed and this is why she has these pains. I wouldn't let her take the Zoloft. Also she is having pain at the back of the head where the neck meets and around her valve site.
Her neuro says she's fine just going to have to give her body time to adjust. It's been 5 months since surgery. How long does it take for adjustment??


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Hey Sharon, "...How long does it take for adjustment?? ..." I'm sorry to say but that is a bit like asking "how long is a piece of string?"
Personally I have had 5 surgeries and each has taken longer and longer to settle and recover from. I am not a very patient man when it comes to pain and I tend to push myself harder than I should, which in the long run doesn't help as I pay for it in pain later. My idea was to build up stamina to get myself back to work but that has not happened. My last surgery was Sept '13, so this time around I'm almost 2yrs post surgery and the dr's have told me that this is about as good as its going to get, which is very frustrating, disappointing and down right annoying.
I am not surprised by the dr's responses as I have been there too. They do their scans, take their pictures and do their tests. If nothing shows then they point at the patient "...its a psychological issue... ...here, take these..." It wasn't until I collapsed that things were investigated despite the fact that there were many signs prior that were written off by the medical fraternity. And although there is a documented history of all of this over the years, still they return to a psychological cause. Now, I investigate each and every medication they give me prior to taking it. I have been put on all sorts of meds from high dose opiates to high dose tranquilizers, heart meds to epilepsy meds and, of course, the psych meds. They all screw with me in some way and some of the side effects are just bloody awful.
I have now decided I need to manage this the best way for me, not them. I do use opiates but at a low dose, by staying low if I have the need I can increase to manage better if my pain has increased. So for me its all a case of 'pain management' for now. My wife will often tell me to take something as she can see my discomfort/pain as I do 'try' to keep them to a minimum. Sometimes not very successfully, but I 'try'
Don't get me wrong, I still maintain the appointments with the neuro's and other specialists and I do follow their advise (my wife makes sure of that) but I also investigate, keep myself as fully informed as I can. I'm seeing an independent neurologist as well as the hospital's surgeon. I'm attending a pain management clinic to better manage all this for me
I made an appointment with an investigating physician prior to one surgery. The physician looked into EVERYTHING. This turned out to be a very good thing as he found an unrelated issue that I was unaware of at the time. So this may be another option, have somebody new take a look for another opinion.
If you are not getting the answers you want then get another dr, get another opinion. Unfortunately the neuro community is fairly small so trying to obtain a truly independent opinion can be difficult. But don't give up hope, it can be done.

Merl1n