Post DBS Surgery: This post marks is to... - Parkinson's Movement

Parkinson's Movement

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Post DBS Surgery

annmariebaird
annmariebaird

This post marks is to mark 12 weeks from surgery date of December 15, 2017. It seems like a long time ago that they wheeled me into the operating room to begin what was to be the best day of my life. I mark time as before surgery and now. Before surgery was spent in my beloved blue chair looking out the window at people walking or biking by my house. It wasn't a terrible time, but frustrating for me because I loved to hike and bike and experience "outside" time. "Now" is being that person outside my window walking, hiking, and in general being on the other side of the window from the blue chair. I still have days when I get tired, but nothing like before surgery. Because I am only 12 weeks out, I know I will only get stronger. My neuro has told me that it can take 6 months or longer to heal, so I have much to look forward to. I invite you to ask me any questions you wish. My purpose here is to help those looking forward from their blue chair to being out in that beautiful world again. If you are contemplating DBS surgery or even just beginning to think that direction, let me know. I will help you any way I can. Life is beautiful again. Enjoy! Annie

47 Replies
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Look at you with your cute hair! You look great! This is all so encouraging and such good news. I must admit I'm still hoping they will have a less invasive way to do this when I need it. I also know when I need it I will be willing to do it. It would sure beat sitting in the blue chair. Or brown, as mine is.

annmariebaird
annmariebaird in reply to Enidah

Keep yourself as healthy as you can. I too hope they will find a less intrusive way. Heres to the future! Annie

michaela13
michaela13 in reply to Enidah

They already have focused ultrasound. I went for the clinical trial but my skull wasnt dense enough. My dbs is set for april 9.

Annie you look “marvelous “. I always look forward to your updates. Thanks for sharing.

Thank you for your kind words.

Hi Ann

can we connect by email

I don't give out my personal email. Sorry.

So glad to hear that, Mary

Thank you for your encouraging update!

I'm so happy for you. You're a true inspiration!

I hope to inspire those who are trapped by this insidious disease. Thanks for your kind words.

Thank you for a great encouraging story. When I asked my neuro what happens after sinemet stops working, he suggested that DBS would be appropriate several years down the path. Great to hear it works well first hand.

One question... do you continue to take sinemet or other medication after the surgery?

annmariebaird
annmariebaird in reply to mishod

Meds before: 12 regular release 25/100 Sinemet plus 6 extended release 50/100 Sinemet, plus the Neuro Patch.

Meds after: 6 regular release 25/100 Sinemet plus 6 extended release 25/100 Sinemet.

My goal is too reduce the 6/6 to 5/5 - by increasing my voltage.

Not to say your neuro is incorrect, but I was told by several doctors as I went through the testing phase that if Sinemet stops working for you, the surgery will not work for you. Might want to get a clarification on that point.

Hope this helps! Annie

mishod
mishod in reply to annmariebaird

Thank you, that makes sense. I guess I meant that the dosage has to go to such high levels that it is not practical.

Good luck!

Hi Annie, hope you are doing good and pray for even faster recovery for you. My father is suffering from Parkinson since 6 years. Condition is going worse day by day though still he is able to walk at his own but in morning it's terrible. Once he starts his day then he becomes better. I am thinking DBS for him. I would like to know what was your condition before surgery. I have heard that who are not able to walk or even more worse condition those only go for surgery. Is it so? What are risks and how much risk involved in it? Do they evaluate you before DBS that whether it will help you or not? If yes then what type of tests they have done? I am from India and wanted to benchmark the evaluation process against abroad for my father that's why asked you so many details. Thanks in advance and wish you very speedy recovery.

Best Regards,

Neha

I will answer your questions this way. Each individual with Parkinsons is different and would be evaluated that way. My understanding of the criteria required before surgery is age, whether or not they are responsive to Sinemet, and whether or not the person is functional in their day to day life. In other words, a person who is 70s but mentally not functioning well might not be a candidate, whereas someone who is in their 80s but sharp mentally might. The main risk I was told about was strokes. They monitor very closely post surgery. I was in the intensive care unit for two nights and they watched me like a hawk. The chances of a stroke are small, but it does happen. They do an in-depth mental evaluation (6 hours) before they do anything else.

I hope I have helped - let me know if you have any other questions! Annie

That was quite helpful. Thanks a lot. Are there any changes in your medication post surgery?

Meds before: 12 regular release 25/100 Sinemet plus 6 extended release 50/100 Sinemet, plus the Neuro Patch.

Meds after: 6 regular release 25/100 Sinemet plus 6 extended release 25/100 Sinemet.

My goal is too reduce the 6/6 to 5/5 - by increasing my voltage.

Any time I can help, please let me know.

Thanks Annie for your quick response. Wish you even faster recovery...:) Will let you know if need further info..

Congratulations. You look great.

What a lovely positive note :) and what a happy face :) My sister and I both have PD, Jenny is weeks away from her DBS op. Your comments are just what we both needed, I don't know who is more nervous, her or I!

Tell Jenny to be strong mentally. Patience is mandatory. It will not happen overnight that you will see results. But then after a couple of months you look around and see the progress and are stunned! It is brain surgery. And your brain gets tired just like other muscles. Give it time to heal. Let us know how she does! I am excited for her new life!! Annie

Thank you, I'll forward your message on to her, she's a strong cookie :) It's me that's nervous :)

You are a very brave and inspirational lady!!

Thank you!

Hi Annie, you are looking great ...wish you speedy recovery. I have question my mother underwent DBS on 19 Feb 2017 but she has constant pain in her legs and still not able to walk properly, she complaints of anxiety a lot ... i am so worried though she is taking syndopa thrice 275 mg a day but her pain is not letting the best out of her and she still has tremors and at present her machine is at 1.35 right and 1.25 left...any light you through on it ...i will really appreciate it.

Thank you

Have a nice day

Sonu Sran

I am not familiar with syndopa - assume it is like sinemet. What does her neuro say about the pain in her legs. My machine is at 3.0 and both sides. I would also question why they have not been a bit more aggressive with her machine. That is the only way you can cut down on the meds. Of course, everyone is a bit different, but I didn't now Parkinsons caused pain in the legs. That almost sounds like nerves being pinched. Sorry I don't have any answers to this. Annie

oh so reassuring annmarie there is light at the end of the tunnel

Absolutely!

Big thank you s and hugs for taking the time to let us be part of this personal part of your life, kind and special lady xxxxxxx

I have had PD for 10 years and have gradually got worse over the last 3. I am now getting lots of side effects from the drugs I am taking and despite some days being better than others, I have had to give up much of my life and therefore I am another person in the blue chair and have lost my independence.

Questions I would like to ask you if possible:

1. Where did you have your DBS? How long did you stay in hospital?

2. Did you have any side effects from your drugs , if so , what were they? Do you still have them now, post DBS?

3. Have you managed to reduce your daily drug intake

4. I am 65 and have already attended for suitability tests for DBS and am waiting for the

go ahead.

Thank you for your patience and taking the time to reply

annmariebaird
annmariebaird in reply to MrPK

I had my surgery in Boise, Idaho. I stayed in the hospital two nights. My side effects were lethargy, drowsiness, feeling dopey. I do not feel any side effects now. I was on a vegan diet because of the protein interaction with Sinemet and now do not have that issue.

Meds before: 12 regular release 25/100 Sinemet plus 6 extended release 50/100 Sinemet, plus the Neuro Patch.

Meds after: 6 regular release 25/100 Sinemet plus 6 extended release 25/100 Sinemet.

My goal is too reduce the 6/6 to 5/5 - by increasing my voltage.

I wish you well with your DBS. Keep posting - it helps others to know what to expect.

Annie

MrPK
MrPK in reply to annmariebaird

Thank you for the info, I'm in the UK and my DBS is probably going to be carried out in BRISTOL, where there is a great team !

Paul

Sooo happy for you! I am just too scared.

I too was scared, but the future in my blue chair overcame my fright! Educate yourself. That is how I did it! Annie

Very encouraging news! Great to hear.

Looking at your picture reminds me so much of me , 2 1/2 years ago. I had DBS surgery on my birthday August 4, 2015 . I was hesitant at first to have it on my birthday, but it’s turned out that it was the best birthday present ever. My life has changed so much. People don’t even know I have Parkinson’s. I think so much of it is positive attitude. Take care, I know you will do well!

I am sooo happy to hear it! Positive attitude is all! Skymom 2008 are you listening?

Annie

I'm so happy for you.

Thanks for posting ,you look fab!

Hi Annemarie, wishing you all the best. I just finished all the cognitive testing and had an MRI.... I have my fingers crossed that I’m deemed a candidate. I should know by this coming Wednesday if I am. If all goes well I will have the procedure in late May......really excited!!!!!! I’m having the procedure done at a Boston Hospital and opted for the saint Jude infinity DBS device. I willl keep you posted on the results!

That is fabulous news! Please let me know what your date is. You could start a journal here so that others may take courage from your adventure. Awesome! Annie

Will do.... thank you

Hi Annie, just an update.... as I said earlier I should have known if I was a candidate 2 weeks ago however the evaluation meeting was postponed due to a major snow storm that hit Boston. So today is the day they are meeting as a team to make there decision on weather I’m a candidate or not. I’m dying with anticipation of what the answer will be. Not sure I can accept a negitive!!!! I keep thinking I failed the cognitive testing in some way ..... oh well just thought I would reach out.

Mark

Hi Mark!

Waiting is so cruel! If you felt good coming out of the cognitive testing, you will most likely be fine. I can hardly wait to hear! If you are accepted, you must post a picture for us - we feel like family, you know!!

I will be waiting to help you through whatever decision awaits you. Prayers for you and your family!

Annie

Excellent news and may you continue to see amazing changes. Keep us posted!

Will do.....thank you

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