Quote:
Originally Posted by humphreys270
no mate, my family all lives in AUS also, there even further away from any good specialists. Im on a small island just of the south east coast of AUS. Sydney is basically Austalia's capital so im going to try my luck there. Ide love to goto the US for treatment as the doctors there are probably much better. But my finances are very tight after having to take so much unexpected time off work.
The doctors have suggested that the pains may be caused because of the tube rubbing over my diaphram, they also said that the tube is far to long in my abdomen. they said it has to much 'freedom' because its so long it may be moving aroung touching my insides causing the pain. Although, because they have already done 4 opperations in2 and a half months, they are refusing to opperate again. I have been told i need to learn to live with the pain. This is why i am seeking treatment in Sydney, becauseit impossible to live with this pain. 
ive finally been discharged from hospital and been given some very strong pain killers so i can atleast manage the pain until i can get in to see the specialist in sydney.. i just hate to be on medications all the time, thats why i got the shunt in the first place, because i was sick to death of being on diamox everyday 4 times a day now im worse of than before i got the shunt
ive been doing alot of research, and this is actually alot more common than i thought. alot of people suffer severe abdo/chest pain after VP shunts and doctors continue to deny any relation to the shunt. There are afew doctors who have delt with this issue and found that changing to a VA shunt fixes the problem. (VA shunt goes into the heart instead of abdomen) so hopefully the specialist in sydney is willing to change the shunt. if not im going to have t get it removed and go back on the medication. I just cannot live with this pain any longer. it is ruining my life. I just want things to go back to normal. I want to be able to drive again and work again and go out with friends. At the moment i cant do any of those things because im just in to much pain. Im also sick of having no money. all the money i have saved goes to my medication which is costing me over $100 a week!
How did your CT scans go jeff179120 have you got any answers yet?? how long ago did you get your shunt fitted?? |
My shunt was wrapped around my diaphragm which was causing severe abdominal pain on that side and then referred pain in my collarbone on that side. For nine months my neurosurgeon told me that the tubing would move on it's own. Then he said that it wasn't going to move, but that the pain wasn't caused by that. Then my nerve doctor called my nsg and told him, this pain must be caused by the shunt, because the replacement of the shunt on that side is when the pain start. Nsg finally agreed to move the tubing, so they moved it laparascopically and the pain was instantly relieved. Then two weeks later the tubing moved back around my diaphragm and the pain came back. Then they cut the tubing so that it just goes to the bottom of my rib cage and cannot reach any organs or rub against anything. My nsg told me that the shunt tubing just free floats in the peritoneum, so it can touch anything. Perhaps your tubing is causing the pain by rubbing against all different organs. Some of us (me included) have a "heightened sensitivity" in our bodies and so we are more sensitive to the presence of the shunt. Perhaps you could also be helped by them shortening your tubing and getting rid of all that extra length
04-05-2013, 08:14 AM
Reply With Quote
Similar Threads
Linear Mode
