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

Thanks Merlin. I did get her in to see the neurosurgeon who diagnosed her 28 years ago. I've been trying for 2 months. They finally listened to me. She is having an MRI Tuesday to show from Brain Stem to Cervical Spine. Once that is complete I pray we get some better answers than we've been given.
I guess every person is different after revision so my question about adjustment time was off base. The neuro who performed her last revision kept telling me she'll adjust, just give it time. But didn't give her any sort of possible time frame. He also told her you don't have Dandy Walker, without an MRI evaluation. The Neuro we recently saw said you can't see her cyst without completing an MRI so now I'm questioning the one who recently revised her shunt. You're right the neuro community is very small so we are at their mercy. They don't really know the pain levels in people nor the weird feelings they have in their bodies so they just want to put a bandaid on the problem rather than helping find and truly fix the problem.
Thanks for responding back. I'll let you know how things go after the MRI and the follow up appointment with the neuro.

Sharon


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Oohhhh hell, I could not agree more with this statement. The amount of 'fun and games' I've with these so called 'medical professionals' annoys me to the extreme. It was once said to me "we know, we understand pain" but understanding and having to manage such pain are two totally different things. I also had a nurse ask me to give her a pain rating out of 10. I said 15, as I lay on a bed clutching my head in agony post surgery. "Ohh it can't be that bad" she said. So I told her to lay on the floor and I'd kick her in the head. "There's no need to be so offensive" she told me, to which I replied "Then stop making stupid bloody statements when you can see that I'm in agony".
As for the 'weird feelings', I have a plethora of these from tingles to sweats to numbness etc and when Dr's can't name or label the cause they use a fallback position of "It must be you..." ie its psychological "...here take a tablet"
I have in the past openly questioned drs about the surgeries being the cause, but I'd STRONGLY recommend not doing this as they become instantly defensive.
Conflicting diagnosis' are not unusual. I presently have a neurologist who I have seen 8 times and have been given 5 different diagnosis' by him. It was explained to me by a fellow patient like this: They treat the body like a manmade machine, where they 'fix' an individual component. Broken component, replace the component. But this ain't a replaceable component, so they treat known symptoms (where they can) then blame the machine when the fix doesn't work.
I do truly hope/wish/pray that all goes well with your daughters appointment, that the scan is completed. And that they can find a cause and solution. But please don't lose heart if they can not (I make that sound easy. HA. It is not) but keep trying to find answers for yourselves

Merl1n

So I told you I'd give you an update after our MRI and follow up.
Well, she does not have Dandy Walker Syndrome any longer she out grew it so the neurosurgeon said. But they were looking for Arnold Chiaria malformation due to her symptoms. Well her cerebellar tonsils are oblongated and have gone through the hole in the skull where the spinal cord comes through to the brain. I can't remember their length at this moment. She has scoliosis and many other of the symptoms that go hand in hand with CM but the neuro said I'm not diagnosing her with that. He suggested we go back to the neurologist we had seen and that he would send his findings over to him.
The neurologist put her on amatriptyline( spelling) to be taken at night before bed. Insomnia is another symptom of CM as well as bladder control which she has problems with peeing, sometimes 40 times a day.
She does have straight hydrocephalus but now it's not caused by a dandy Walker cyst, so we're back to finding out if she does now have Chiaria Malformation and finding treatment for that.


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Abdominal and shoulder pain after VP shunt
 

I had my VP shunt 5 years ago in 2012 - only just found this site.
I had immediate and total relief from all the symptoms of the hydrocephalus that had developed as a complication of my acoustic neuroma but from day 1 after surgery I started getting intense abdominal cramps on and off- but several times a day to start with- like being stabbed. I am sure it was the CSF causing irritation because the location of the pain was directly related to my body position and where the liquid would drain to - so if I was standing or sitting I would be 'stabbed' upwards from my bowel or bladder area, if I lay down on my side the stabbing was under my ribs on the side I was lying on. I also had a very intense stabbing in my left shoulder which I believe is referred pain from diaphragm irritation. It can't be the end of the shunt tube as it moves around so much. I mentioned this on my first follow up appointment but wasn't taken seriously- they had never heard of this apparently. I'm pleased to report that the frequency of the cramp/stabbing reduced after a few months but I still get the shoulder pain once or twice a week and the abdominal stabbing pain perhaps once every 2-3 weeks. I am fit and well otherwise and can put up with it but for the few minutes it lasts it is totally intense and distracting. Has anyone else had this and have they ever had an explanation? Thanks

Yes I have. I had a VP shunt installed just oved a month ago. I have experienced very severe stabbing pain at times and, like you, depending on position. My neuro believes it is the tube rubbing up against various areas.
It is good to know it has subsided some for you as this is really hard to live with - it's difficult to go anywhere or make plans if I'm not sure I can do so and not have a pain attack.
I don't know of any other reason for this and neuro had no other explanation as everything looks good on the scans. Absolutely excellent neuro team by the way.
I can only hope both our journeys are made a little easier by less pain less often.

Abdominal pains
 

I had a bur hole done oct 2016. That failed and had a VIP shunt placed on the left side on Valentine’s Day 2017. The min I woke up from my second surgery I’ve had SEVERE side pains. Sometimes it’s on the left, sometimes it’s in the right. Mainly the left side. I have been to every doctor you can think of with no help. I can barely walk when they are in full force. Anyone else ever find any relief or what the heck I can do!? Thanks!!!

Any suggestions would be greatly appreciated!!

Hello Michick21 and welcome to NeuroTalk
I made the edit you required to your first post on this thread.

We would also suggest making your own thread as more are likely to see and respond then.