My husband is 3 weeks post DBS surgery!!! And doing GREAT!!! :-)

My hubby got his DBS on Oct. 1. We were very confident in our doctor and we are thankful for all the prayers going to God on his behalf! We live in the USA, Texas and his Social Security Advantage insurance plan paid soooo well for it!!! Thanks to our Lord!! If anyone has any questions about how it went feel free to ask or email me.

We have some questions for those that have had your DBS recently. We hope you can remember some of the unpleasant things to help us know if they are "normal". We, of course understand everyone is different and no two people are alike. Did you have a strange warm, hot sensation at the site of the power pack? Did it eventually go away. Did it feel like it was moving? Leo states it goes up and down.

Oh! We also want to let those know that are still thinking about doing this that he felt soooo good after the surgery for about 2 weeks!! The doctor said it was due to the DBS being on while the tested it. He said some people have this happen and some don't but it is a positive sign. My hubby was sooo happy and felt wonderful and hopeful. His walk was sooo much better! His facial expressions were beautiful!! he had NO MORE PAIN!!! and we think that of course was the BEST of all!!! We keep trying to be patient and not get our hopes up tooo much but oh it is sooo hard!! 3 more weeks and we see his nurologist to get it turned on!! We can't wait!!! :-)

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  • I had DBS in June 2011. The key lies in the programming of the stimulator and be patient with this as it took me around 6 to 9 months to get it right. There is what is known as the "stun" effect after the op - this gave me a tremendous feeling of well being. I have reduced my medication by 60%. I wish you well. Tonyxx

  • Hi Tony!

    Thank you for your response. Do you mean that the strange feelings will go away when the stimulator is programmed correctly? We thought that the feeling of the battery pack getting hot and the way it seems to move was just that the surgery is still so fresh. We were hoping after time it will stop. What do you think?

  • I would think that when the stimulator is programmed these sensations may well disappear - I cannot speak from experience as I never had any of the feelings you describe. Tony

  • Hi Mary

    I thought this post was from you even before I answered it. So glad Leo is doing well. I can't answer any of your questions, because you know I have not had this done, but my thoughts and prayers are with you both. I will e-mail you soon, I owe you one, I know.

    Sue

  • Hi Sue!!

    Thank you sooo much!! I really should have written you a longer letter. I am looking forward to reading yours! Mary

  • hi, I just read your post. FABULOUS. I am so glad its all going well. I am waiting to start the ball rolling to have DBS. NO PAIN sounds WONDERFUL. Best of luck to you both. Do you mind if I ask a few questions? xx

  • Hi Yogibear!

    Thank you for your kind comments! Yes, we were feeling it was a dream when my husband had no pain!! I would be happy to answer any questions you may have. Tony mentioned in his answer above that what my husband is experiencing is called "stun effect". We were told by his doctor that this may happen and it is a good thing. Also that it may not last the full 6 weeks we are waiting to turn on the unit. This is true as ny husband's PD symptoms are coming back now. We only have 3 more weeks to wait to get started on the programing!! We look forward to this and pray that he will get that wonderful experience again!

    I wish you the best on your DBS also!! May Christ be with you through it all!!

    Mary

  • Happy happy for you the no pain is great. Had mine in 06 so I'm going to have my battery changed end of month. LikE compucure said its all in the programming. Good luck and enjoy i think you'll be very happy you did. GO DBS

  • Thank you grammieof3!!

    Best wishes to you also on your battery changed! Thank you for your kind wishes. Yes!! Go BDB!!!

    Mary

  • I had my DBS in June in Albuquerque. I saw Dr. Jill monthly from July, Aug, Sept. each time the electricity voltage was increased. I now have 3.5 setting on my left and 2.9 on my right side. My Sinemet is 1 at 6am, .5 @9, .5@12, .75@3, .75@6pm and 1@9pm. My pre DBS was 1.5 every 3 hours. My dysikensia has stopped and my on time has increased. I've been invited to speak in El Paso to PD patients on Nov 2 interested in DBS.

  • That's wonderful jonroberts!

    I wish you the best success with your DBS and even more improvement!! :-)

  • no pain and less meds. Sounds well worth it! Here's to continued healing!

  • Just a quick?... is he a tremor or non tremor PWP?

  • Hi Etterus, Yes he is a tremor PWP. It was never really bad, or a lot of tremoring. His ridgidity was very bad!! That was all gone!! He could walk well again and talk well and loud like himself! His expressions were back too!! He looked like himself again!!! The best part of all was NO MORE PAIN!!! It was a miricle!!! :-)

  • Congratulations! I hope everything continues togo well.

  • Thank you so much Koko!!! :-)

  • Hi. I'm scheduled to have DBS performed in January 2013. Specifically the surgery is for my PD symptoms. Could I ask what the area of the brain was targeted? STN, GPI or other.

    Thanks for sharing and for your positive attitude. Your posting encouraged me as I wait for my surgery.

  • Hi rjd311!!

    First I wanted to tell you we wish you the best on your decision to get your DBS implant!! May Christ be with you through your new journey to care for you and make it successful!!

    To answer your question my husband had the STN area targeted.

    I am so happy my posting helped to give you encouragement!! Please let us know how your surgery goes!! :-)

  • HUZZAH!!!

    Steve (Bisbee, AZ)

  • Hi srarndt (Steve)

    ???? LOL!! I hope that means YEY!!! HORAY!!! or WoooHoo!!! ????

  • That's great news...I'm 5 months post DBS...I can do so much more now than before. I still have an intermittent tremor. They told me it would take time to adjust and it has. I'm slow to tolerate voltage, but overall, no complaints. I did have some unexpected freezing, which I never had before. They tell me that that can be a side effect. It's only happened twice in the last five months, though. I can live with that--now that I know it's possible. They tell me that it takes the brain a while to adjust and to learn new ways to do things. That's true...those neurons take a while to reconnect--but they do. There may be some unexpected things happen, but overall, they are so much less to deal with than before. Best to you both.

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