Hi My husband has just had DBS. I am happy to share the experience of being a partner of someone going through this and learn from others who have gone through the experience
Hi Ribena,
I had my DBS in January and got 'switched on' 3 weeks ago.
It has been life changing for the better but not without its ups and downs.
When was the Operation and when does your husband have the neurostimulator switched on ?
Regards,
007.
I had my DBS in January and got 'switched on' 3 weeks ago.
It has been life changing for the better but not without its ups and downs.
When was the Operation and when does your husband have the neurostimulator switched on ?
Regards,
007.
Thanks for replying. He had the electrodes put in 10 days ago and the battery put in and then turned on a week after. He is now home. The tremor is if anything worse and he is exhausted after the two lots of surgery. I feel we have not been told enough, just that it will take time. My fear is that it may not have worked and he has been all through this for nothing and our hope of him having relief from the terrible tremor is dashed. We don't have a P nurse in our area. He had it done at King's which is 2 hours away from where we live. It feels scary
Hi Ribena!
Firstly, don't be scared.
I don't want to clog up the entire website with my posts, but for me the period directly after DBS was a real roller coaster. I had mine done at a different location to your husband, and I was not switched on for 8 weeks after the initial operation. There is no doubt in my mind that post op. the tremor was worse, but when you think about what your brain goes through during the procedure it is hardly suprising that you have a reaction...however, a quick trip (2 hours each way) back to the movement nurse and I was reassured that all was well and that I just needed to give it some time.
I was programmed after 8 weeks and for four days I had a fabulous time, it did not matter what I did I had no tremor, and belive me we pushed the envelope really hard ! On day 5 the tremor came back with a vengance, but another trip to hospital, this time for 2 nights and three days saw me totally re-programmed. It as been 12 days since re-programming and all is really well. I have had to up the voltage by .1 (point one) of a volt so far, but I have played golf 3 times this week and although parts of my game need work, my putting has improved hugely!
I know that I will have to go back for more fine tuning over the months and years, but this is long term treatment. Do not be scared if your husband is not 100% better instantly, this is brain surgery, it is not easy and there are no guarantees.
The key (for me) is staying positive. I had real doubts during the endless 8 week wait to get switched on, stuck at home by myself for several days a week in freezing January/February, but now it is done I feel so much better, and my friends and family tell me they cannot belive how well I look now.
Your husband may need to wait for some swelling to go down, or for his brain to adapt to the introduction of the electricity, or to adapt to a reduction in medication, especially if coming off Dopamine Agonists, or for some other side effect to settle down before he feels the full benefit of the DBS. There is also the post op. period when he will feel very very tired. I did for about two full weeks, and that can get you down and also make the PD seem worse.
So, there is a long way to go yet. Do not be scared, look forward to a summer when your husband will look and feel much better, with no discernable tremor. I feel about 10 years younger already !
There is an article in the PD magazine spring edition where a lady describes her experience of DBS 12 months ago. It is very interesting reading and may help you and your husband appreciate that although there are challenges ahead you are not alone, and others have been through the experience already and felt the benefits.
Be strong, be brave, be patient, it will come good before too long.
Regards,
007.
Firstly, don't be scared.
I don't want to clog up the entire website with my posts, but for me the period directly after DBS was a real roller coaster. I had mine done at a different location to your husband, and I was not switched on for 8 weeks after the initial operation. There is no doubt in my mind that post op. the tremor was worse, but when you think about what your brain goes through during the procedure it is hardly suprising that you have a reaction...however, a quick trip (2 hours each way) back to the movement nurse and I was reassured that all was well and that I just needed to give it some time.
I was programmed after 8 weeks and for four days I had a fabulous time, it did not matter what I did I had no tremor, and belive me we pushed the envelope really hard ! On day 5 the tremor came back with a vengance, but another trip to hospital, this time for 2 nights and three days saw me totally re-programmed. It as been 12 days since re-programming and all is really well. I have had to up the voltage by .1 (point one) of a volt so far, but I have played golf 3 times this week and although parts of my game need work, my putting has improved hugely!
I know that I will have to go back for more fine tuning over the months and years, but this is long term treatment. Do not be scared if your husband is not 100% better instantly, this is brain surgery, it is not easy and there are no guarantees.
The key (for me) is staying positive. I had real doubts during the endless 8 week wait to get switched on, stuck at home by myself for several days a week in freezing January/February, but now it is done I feel so much better, and my friends and family tell me they cannot belive how well I look now.
Your husband may need to wait for some swelling to go down, or for his brain to adapt to the introduction of the electricity, or to adapt to a reduction in medication, especially if coming off Dopamine Agonists, or for some other side effect to settle down before he feels the full benefit of the DBS. There is also the post op. period when he will feel very very tired. I did for about two full weeks, and that can get you down and also make the PD seem worse.
So, there is a long way to go yet. Do not be scared, look forward to a summer when your husband will look and feel much better, with no discernable tremor. I feel about 10 years younger already !
There is an article in the PD magazine spring edition where a lady describes her experience of DBS 12 months ago. It is very interesting reading and may help you and your husband appreciate that although there are challenges ahead you are not alone, and others have been through the experience already and felt the benefits.
Be strong, be brave, be patient, it will come good before too long.
Regards,
007.
thank you so much for taking the trouble to send such a long reply. It has made me cry but that is good. It is so much better hearing it from someone who has gone through it. I don't know about you but they never told us things could get a lot worse before they got better. You must be very brave to have gone it alone as well.
Thank you very very much again. It is going to be a long journey I can see but hopefully it will all turn out well.
X
Thank you very very much again. It is going to be a long journey I can see but hopefully it will all turn out well.
X
Ribena,
You are more than welcome. I am sorry if I made it a bit over emotional, I will try to be a bit less emotive in the future.
I don't consider myself as brave, I was offered a chance to try to find an improvement and took it. For me 'brave' is the descrition for those who first had the pioneering DBS, and those who performed it.
I need to make it really clear that I did not go through this alone, my wife was with me every step of the way - as she has been since dx in August 2003, as have my three children.
I have also had massive support from family and friends, and the care I have had from the Functional Neurosurgery Team at Frenchay Hospital (Prof.Gill, Dr Heywood and Nurse Rebecca Sander especially) has been outstanding. Credit to, to the staff at the Burden Unit at Frenchay who have looked after me really well during my in-patient visits (as opposed to impatient visits!!)
Parkinson's UK tell us that they are here becuase no one should go through Parkinson's alone, so if you are feeling isolated and not been as fantastically lucky as me, then contact Parkinson's UK. You really don't have to be alone.
Regards,
007.
You are more than welcome. I am sorry if I made it a bit over emotional, I will try to be a bit less emotive in the future.
I don't consider myself as brave, I was offered a chance to try to find an improvement and took it. For me 'brave' is the descrition for those who first had the pioneering DBS, and those who performed it.
I need to make it really clear that I did not go through this alone, my wife was with me every step of the way - as she has been since dx in August 2003, as have my three children.
I have also had massive support from family and friends, and the care I have had from the Functional Neurosurgery Team at Frenchay Hospital (Prof.Gill, Dr Heywood and Nurse Rebecca Sander especially) has been outstanding. Credit to, to the staff at the Burden Unit at Frenchay who have looked after me really well during my in-patient visits (as opposed to impatient visits!!)
Parkinson's UK tell us that they are here becuase no one should go through Parkinson's alone, so if you are feeling isolated and not been as fantastically lucky as me, then contact Parkinson's UK. You really don't have to be alone.
Regards,
007.
Morning 007!
I am thinking seriously about DBS myself. At the moment I don't have a tremor but I am getting more dyskinetic. I'm not sure about it yet as I don't have a problem all of the time and it doesn't seem as bad as some people on the Forum have described. I can still drive at the moment and my review is just over a year away. If I elect to have it done now I am worried I will not be able to drive again. Obviously I wouldn't drive anyway if I wasn't safe to do so.
Do you mind me asking whether you know anything about this?
thanks
tinker
I am thinking seriously about DBS myself. At the moment I don't have a tremor but I am getting more dyskinetic. I'm not sure about it yet as I don't have a problem all of the time and it doesn't seem as bad as some people on the Forum have described. I can still drive at the moment and my review is just over a year away. If I elect to have it done now I am worried I will not be able to drive again. Obviously I wouldn't drive anyway if I wasn't safe to do so.
Do you mind me asking whether you know anything about this?
thanks
tinker
Tinker,
You would be well advised to speak to you neuro and PD Nurse (if you have one) before you make a final decision. The testing to see if you will benefit is quite rigerous and that should be your guide, i.e. 'will you benefit from the operation?'. There is also the question of funding, the op. costs in the region of £30,ooo so your PCT will want to know you are going to benefit, too!
As for driving, I did not drive for 6 weeks after the op. I notified DVLA and my insurers at the time, and notified them again after I got the OK from hospital. I have no problem in driving, in fact it is far easier post op. as I don't get the pain in my shoulder that I used to get.
Your decision needs to be a joint one between you, your loved ones (it is quite a stressful time) and your health care team. You may not be suitable, or you may need to wait (I was turned down 12 months before the op. - quite rightly as it turned out) but there is nothing to stop you asking about it.
Hope this helps,
Regards,
007.
You would be well advised to speak to you neuro and PD Nurse (if you have one) before you make a final decision. The testing to see if you will benefit is quite rigerous and that should be your guide, i.e. 'will you benefit from the operation?'. There is also the question of funding, the op. costs in the region of £30,ooo so your PCT will want to know you are going to benefit, too!
As for driving, I did not drive for 6 weeks after the op. I notified DVLA and my insurers at the time, and notified them again after I got the OK from hospital. I have no problem in driving, in fact it is far easier post op. as I don't get the pain in my shoulder that I used to get.
Your decision needs to be a joint one between you, your loved ones (it is quite a stressful time) and your health care team. You may not be suitable, or you may need to wait (I was turned down 12 months before the op. - quite rightly as it turned out) but there is nothing to stop you asking about it.
Hope this helps,
Regards,
007.
Hi 007, thank you very much for your reply, the information was extremely helpful. It also makes me feel a lot better about considering it if there is a good chance that I can still drive afterwards as you have done. I appreciate everyones circumstances are different and it seems like it is a lengthy road ahead yet so I'll have to work through it as you say with all the relevant people involved.
Thank you again for taking the time to respond with so much information.
Tinker
Thank you again for taking the time to respond with so much information.
Tinker
I agree i had mine done at frenchay and they were so good,congratulations to rebecca sanders on there new arrival.And got to say a big thanks to caroline robbins who steped into her shoes.Also to the surgens prof gill & dr alan whone and all the staff at burden ward.NEVER LOOKED BACK