Good afternoon,

Thank You very much for this wonderful Support Group.

I have had quite a few brain ops during my life time. I am now recovering from last years two brain operations whereby i had a metronic shunt inserted of which it hasnt been switched on as yet as it is a back up should my other shunt fail again. (It has failed and had to be repaired and replaced twice already). I suffer from Hydrocephalus and Arnold Chiari Malformation.

I am now back at work, driving again etc and my headaches are a thing of the past. I just suffered from quite a few severe seizures after my last operation last year May but have since been put on Seizure meds and coping much much better and my seizures are controlled. I wonder if i will have to have any further revisions or brain operations in the far future? How have you all managed with the thought of having to think of further revisions etc in some time in the future?

Thank You for being there for support.

Take care,

Kind regards


Samantha
p.s. How do i change my user name? It seems a bit formal? Thanks

my nerosurgeon dosent beleive anything is wrong how do you get them to believe you?

Welcome Bubba76.

hown do suggest I go about getting something done about my problem with the pressure around where the pump is at to get a Dr to believe all they will say is that the shunt is working properly?

Can you try a second independent opinion, if your regular doctors won't follow up on your complaints?

Hey Bubba, I've had similar problems with NS not believing there was a problem. So the next time I had a problem, I didn't bother saying anything. The next surgeon went off his head at me for not following up because there was a problem. After he operated again, I've had further problems, so I returned AGAIN and this time I'm told 'there's nothing wrong'.
It seems that if the patient has a problem, don't worry. But if the scans show a problem, then they will act. Presently my scans are clear but the pressure I am feeling is far from OK, but the dr's don't seem all that interested. So I'm sorry to say but, like me, you're stuck. The NS community is very small and trying to get another 'independent' opinion, can be near impossible. I know this as I have tried. Best of luck, let us know how you get on
Merl1n

If you think or you know you have a problem the only way to get anything done is by getting a totally independent opinion, unfortunately the only way is by going to another area because the Neuro's tend to stick together because they don't want to upset there colleagues. I found that you need very good support from family, friends & especially your family doctor. You really have to stick up for your rights & be assertive like many others my scans looked o.k but I knew my shunt was faulty. As soon as the Medtronic shunt was replaced all my symptoms disappeared immediately. It has now been 4 years with no problems.:. I wish you all well . Good LUCK