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DBS Surgery

Posted by parkin41 @parkin41, Aug 24, 2021

Has anyone had first hand experience with DBS surgery either through self or a loved one. My dad is 82 with last stage Parkinsons and my family is divided as to whether or not my dad should have it done. Just wanted to hear from others what their experience has been after the surgery.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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fischer24 | @fischer24 | Sep 15 7:05pm
In reply to @lisalucier "Welcome to Mayo Clinic Connect, @fischer24. I wanted to let you know I moved your post..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Welcome to Mayo Clinic Connect, @fischer24. I wanted to let you know I moved your post to this existing discussion on Deep Brain Stimulation (DBS) so you could talk with other members about shaving the head fully or partially. I'm also tagging others who have posted on this topic on Mayo Clinic Connect. Please meet @tuyetnga @parkin41 @maxaz1 @suca @finneysun @hopeful33250.

Do you have a scheduled procedure for DBS, fischer24? If so, when will it occur?

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Thank you Lisa for sending my question in the right direction. No I do not have a date yet for dbs. I was just put on a different medication and waiting to see of this works. If it doesn't I'm seriously considering the dbs.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 16 3:14am
In reply to @fischer24 "Just wondering what the clinics procedure is for dbs. Do they shave your head or is..." + (show)
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Just wondering what the clinics procedure is for dbs. Do they shave your head or is it just shaved where they need to operate or does it depend on the doctor? I've read a lot of clinics don't shave the whole head anymore. My self confidence is low already and to have my whole head shaved makes me extremely nervous.

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Hello @fischer24

I would like to join @lisalucier in welcoming you to the PD support group on Mayo Connect. While I have never required a DBS procedure, I have known many who have had DBS and I have never known of anyone who had their head shaved. This would be a good question for your doctor.

It looks like you will be trying a new medication before considering DBS,. What symptoms of PD are the most difficult for you now? Have any previous medications been effective?

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1 reply
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fischer24 | @fischer24 | Sep 16 4:13am
In reply to @hopeful33250 "Hello @fischer24 I would like to join @lisalucier in welcoming you to the PD support group..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @fischer24

I would like to join @lisalucier in welcoming you to the PD support group on Mayo Connect. While I have never required a DBS procedure, I have known many who have had DBS and I have never known of anyone who had their head shaved. This would be a good question for your doctor.

It looks like you will be trying a new medication before considering DBS,. What symptoms of PD are the most difficult for you now? Have any previous medications been effective?

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I have tremors on my right side hand and leg. The best medication I've been on was c/l ER 25-100mg but it made me extremely drowsy. I just wanted to sleep all the time. In order to do my job I must get these tremors to stop.
DBS is probably my next step my doctor said.

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tuyetnga | @tuyetnga | Sep 16 12:19pm

My first DBS surgery was 3 years ago, not very successful, so i didn't to proceed with the other side, until 3 months ago after seeing a different neurologist who referred me to a different neurosurgeon who performed the surgery on the other side. I see improvement of my dexterity and speech and rigidity after this one, so it's very important to choose your surgeon carefully. In both instances, they only shaved the parts where they have to work on.

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1 reply
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dgt1978 | @dgt1978 | Sep 16 3:10pm
In reply to @lisalucier "Welcome to Mayo Clinic Connect, @fischer24. I wanted to let you know I moved your post..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Welcome to Mayo Clinic Connect, @fischer24. I wanted to let you know I moved your post to this existing discussion on Deep Brain Stimulation (DBS) so you could talk with other members about shaving the head fully or partially. I'm also tagging others who have posted on this topic on Mayo Clinic Connect. Please meet @tuyetnga @parkin41 @maxaz1 @suca @finneysun @hopeful33250.

Do you have a scheduled procedure for DBS, fischer24? If so, when will it occur?

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Hi! I had DBS surgery in July this year at Mayo Clinic in Rochester. I had my head shaved only at the incision sites so I looked really ok after the surgery. When wearing my sun hat you could not even tell I had surgery.

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2 replies
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fischer24 | @fischer24 | Sep 16 7:45pm
In reply to @dgt1978 "Hi! I had DBS surgery in July this year at Mayo Clinic in Rochester. I had..." + (show)
Profile picture for dgt1978 @dgt1978

Hi! I had DBS surgery in July this year at Mayo Clinic in Rochester. I had my head shaved only at the incision sites so I looked really ok after the surgery. When wearing my sun hat you could not even tell I had surgery.

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Thank you so much for the information.

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fischer24 | @fischer24 | Sep 16 7:51pm
In reply to @tuyetnga "My first DBS surgery was 3 years ago, not very successful, so i didn't to proceed..." + (show)
Profile picture for tuyetnga @tuyetnga

My first DBS surgery was 3 years ago, not very successful, so i didn't to proceed with the other side, until 3 months ago after seeing a different neurologist who referred me to a different neurosurgeon who performed the surgery on the other side. I see improvement of my dexterity and speech and rigidity after this one, so it's very important to choose your surgeon carefully. In both instances, they only shaved the parts where they have to work on.

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Thank you for the helpful information. Any advice on how to choose a surgeon?

REPLY
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 17 3:31pm
In reply to @dgt1978 "Hi! I had DBS surgery in July this year at Mayo Clinic in Rochester. I had..." + (show)
Profile picture for dgt1978 @dgt1978

Hi! I had DBS surgery in July this year at Mayo Clinic in Rochester. I had my head shaved only at the incision sites so I looked really ok after the surgery. When wearing my sun hat you could not even tell I had surgery.

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Hello @dgt1978 and welcome to Mayo Connect. I appreciate you sharing about your DBS experience at Mayo Clinic. As the surgery was just a few months ago, I'm wondering how you are doing now.

What PD symptoms were you experiencing that were helped by the DBS procedure? Are you still having adjustments made?

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1 reply
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jflamini | @jflamini | Sep 17 7:44pm

My wife was diagnosed 15 years ago and had successful DBS about 5 years ago. She is 69 years old and still bikes, swims, walks and teaches yoga after the surgery. She was also concerned about the hair and no, they did not shave her head, only two small spots where the leads were placed. Before DBS she needed to use a walker before her meds kicked in each morning. Now she walks a mile each morning before her first dose with no walker. Ironically, I was diagnosed three years ago and have minor symptoms so far. If needed I will also investigate guided ultrasound which is much less invasive but not adjustable as DBS. Either way look for a surgeon who has done many procedures. At the time my wife surgeon had completed 1,500 surgeries.

Best wishes, Joe

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1 reply
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fischer24 | @fischer24 | Sep 17 9:09pm
In reply to @jflamini "My wife was diagnosed 15 years ago and had successful DBS about 5 years ago. She..." + (show)
Profile picture for jflamini @jflamini

My wife was diagnosed 15 years ago and had successful DBS about 5 years ago. She is 69 years old and still bikes, swims, walks and teaches yoga after the surgery. She was also concerned about the hair and no, they did not shave her head, only two small spots where the leads were placed. Before DBS she needed to use a walker before her meds kicked in each morning. Now she walks a mile each morning before her first dose with no walker. Ironically, I was diagnosed three years ago and have minor symptoms so far. If needed I will also investigate guided ultrasound which is much less invasive but not adjustable as DBS. Either way look for a surgeon who has done many procedures. At the time my wife surgeon had completed 1,500 surgeries.

Best wishes, Joe

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Thank you Joe for the information. It makes me less nervous on such a surgery. Thank you again.

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