my hubby has undergone deep brain stimulation in sept 2011 , they got the wires in the wrong place and in dec 2011 he had it done again. now feb 2012 they are saying the wires a,re still in the wrong place and needs the whole operation doing again ! has anyone else had any trouble like this or any advice please, we dont know what to do next.
Hi peace,
I have had the procedure done, albeit in Australia, but am absolutely flabbergasted at what you describe.
When my procedure was done, the main part of it is measuring to less than a millimetre, exactly where the probes should be. I think I had over 5 CT Scans per side before they commence testing to ensure it works while you are awake. They test both left and right sides to ensure that the probes are exactly in the correct position before proceeding to the next step which is running the cables from the brain down into the chest wall and insertion of the stimulator under general anaesthetic.
To hear that your husband has gone under surgery a second time only to find that they are STILL not correctly positioned, rings HUGE alarm bells for me. I would ditch this Neuro in a heartbeat and look for someone who's reputation is spotless and has vast experience. From what you are describing, it sounds like he hasn't a clue and he should be avoided like the plague. It is hard enough going through the surgery once, but twice, then three times???
I hope you both get this sorted out, as I am sure once it is, you and your husband should notice a big difference. I for one would like to hear the eventual outcome.
Good Luck.
Andy
I have had the procedure done, albeit in Australia, but am absolutely flabbergasted at what you describe.
When my procedure was done, the main part of it is measuring to less than a millimetre, exactly where the probes should be. I think I had over 5 CT Scans per side before they commence testing to ensure it works while you are awake. They test both left and right sides to ensure that the probes are exactly in the correct position before proceeding to the next step which is running the cables from the brain down into the chest wall and insertion of the stimulator under general anaesthetic.
To hear that your husband has gone under surgery a second time only to find that they are STILL not correctly positioned, rings HUGE alarm bells for me. I would ditch this Neuro in a heartbeat and look for someone who's reputation is spotless and has vast experience. From what you are describing, it sounds like he hasn't a clue and he should be avoided like the plague. It is hard enough going through the surgery once, but twice, then three times???
I hope you both get this sorted out, as I am sure once it is, you and your husband should notice a big difference. I for one would like to hear the eventual outcome.
Good Luck.
Andy
Dear Peace so sorry to hear of your current situation, are you in the UK ?
the reason i ask is that DBS was explored for my o/h but due to other issues from Dystonia felt it would be to risky to attempt but our local PCT insisted that he was considered for this before applying for Funding for Duadopa Pump.
hope things improve for you soon pleas ekeep us posted x
the reason i ask is that DBS was explored for my o/h but due to other issues from Dystonia felt it would be to risky to attempt but our local PCT insisted that he was considered for this before applying for Funding for Duadopa Pump.
hope things improve for you soon pleas ekeep us posted x
hi all it s been a while i know but i just read bubbles post on DBS and i have been refferred and wghat i have read here is a bit scary too say the least . How long is the waiting list and how long is recovery etc can any one give me some info about it im all confused about what to do is this the last attemt at treatment for me as the drugs have had not a good effect towards anty sort of control io now have developed restless leg syndrome and its getting more n more painful as the days go by .I think my nurse is going to get the dr to refer me to physio so i hoping that will calm the legs down a bit .
Sorry i meant Peaces post
weve also been told theres no guarantees the surgeon will get it right and 3rd time and it will be his last attempt.we dont know which way to turn for advice
it took almost a year to get the treatment and recovery is a good 6 weeks for the swelling to go down