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4-Year DBS Follow-up


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#281 KimAgain

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Posted 22 April 2015 - 11:35 AM

I was just sitting down to chronicle--for my Neuro appointment tomorrow--my symptoms, drug dosage, and DBS adjustments since my last visit, when I came across this from 2012.  I've redacted the Drs names, but everything else is as I gave it to him.  Thought it might prove interesting--at least mildly--so I'm  sharing it...

 

February 18th, 2014 - Routine Visit - Dr. xxxxxxxxx  xxxxx

 

 

Oct 17th, 2013 - Annual visit with Dr. xxxx.  Dr. xxxx raised R Body to 1.2.  Overall, things look good.

 

Jan 4th - DBS R Body, raised to 1.3; Meds, frequency decreased by 30 mins a dose.

 

Jan 9th - Meds decreased to 3 x day.

 

Jan 17th - DBS, R Body, raised to 1.4.

 

Jan 23rd - Tremor, persistent, meds raised to 4 x day.

 

Jan 28th -  Foot twisting, L Body, raised to 1.2.

 

Feb 5th, 6th, 7th - Hip pain; both sides, upon waking.

 

Feb 10th - Hip pain persistent upon rising and very uncomfortable during the morning, L Body 

      lowered to 1.1/R Body to 1.3

 

Feb 15th - Hip pain gone, tremor back, R Body raised to 1.4.

 

Current Conditions:

 

L Body - 1.10/R Body 1.40

 

Battery level 2.92

 

R Body:  Foot dragging more than usual (tripped three times last week), second and third toes tend to turn under.  Hip pain has improved, and all the callouses on my feet are now gone - this means, the chronic, excessive foot twisting is much improved.

 

L Body:  Slight twisting in right big toe and tingling/numbness sensation also along big toe and into foot - mostly noticed upon rising. If I raise the DBS to 1.2, the twisting is worse and I have hip pain, if I lower it, things improve, but I require more meds. 

 

Currently taking 4 Sinemet daily.


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#282 mickirose

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Posted 22 April 2015 - 05:01 PM

Thanks Kim for sharing what fine tuning means. Keeping log of any changes and results is obviously important. You continually give us info. to learn from. Thanks. Micki


64 yrs.old   Presented with R hand tremor 2002 Dx'd 2004  Multiiple meds gone through and tossed due to adverse side effects . Presently on Sinemet 1 1/4 25/100 7x/24 hrs., Paxil, lotrel, Lipitor,Prilosec. Have moderate bilateral tremors, rigidity, bradykinesia, moderate dyskinesia during "ON" time, poor fine motor and poor manual strength esp. on left. Slight softening of speech and pronunciation. Handwriting and computer use issues. DBS in near future.  Nana of 4 little beauties under 8 and 1 soon to arrive! Tai cHI for health and balance


#283 waruna01

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Posted 01 May 2015 - 12:06 PM

Kim, have made any improvement on loss of energy after DBS programming or find out what’s causing the issue? My dad had DBS and he seems to be having the same issue.



#284 KimAgain

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Posted 01 May 2015 - 04:55 PM

Kim, have made any improvement on loss of energy after DBS programming or find out what’s causing the issue? My dad had DBS and he seems to be having the same issue.

Yes!  It seems that my lack of energy and general apathy were for the following reasons...

 

  • Vitamin D deficiency
  • Iron deficiency
  • B12 deficiency
  • Depression

The first three, once brought up to a healthy level, made a difference.  About 30% difference.  The remainder, my neurologist suggested might be depression.  He wrote a prescription for Zoloft, but I said I would not fill it until I really felt I needed it.  Six months went by.  I was folding in on myself like a house of cards.  

 

I always thought--because I'd never suffered with it before--that depression meant, sadness.  What I have learned is that, for me, depression is defined as the almost complete loss of oneself... and the total inability to care where you have gone.  

 

A friend finally challenged me on the problem.  At a time when I should most definitely have been happy, she took me to one side and asked me why I was not.  I tried telling her I was, but she called me out, "I've known you a long time, Kim, why have you got a fake smile plastered all over your face?  Why is your smile not reaching your eyes?"   

 

Busted.  

 

For the first time, I voiced what I was beginning to see was a very real problem.  "I think I'm depressed.  I should be happy.  I am happy, in my head, but I just have no feelings inside me at all."  I told her what my neurologist had said and about the prescription he'd given me.  Her response: "What?! Why aren't you taking the medication?  Take the damned Zoloft!"

My husband heard her and we--all three of us now--had a "come to Jesus" moment over the issue, too.  Next thing I know, I have friends and family from all over calling me to ask why I have not done anything about the depression I was so obviously in?  I thought I'd kept it on the complete down low, nobody knew how I felt, really, but me.  Boy, was I ever wrong.  The cacophonous voice of my friends and family in unison...

 

"Take the Zoloft!!"

 

So, two months ago, I started on the Zoloft--at a dose, my neurologist told me, which was just a notch above that of water.  Within a month, I was about 25% better.  The dose was increased a tiny amount.  40% improvement within two weeks.  

 

A couple of weeks ago, I had my regular neurology visit.  My DBS is ticking along just fine (battery getting low at 2.88, but it could be another year before it needs replacing, he said).  He also said I looked better than he'd ever seen me and asked me about the depression.  We had an open, frank conversation about my struggles and, he increased the Zoloft dose some more.  

 

This morning, I was washing my floor... sort of a mindless task... but, something decidedly odd was happening I noticed. Sound was leaking out of me.  I was singing

 

I think I'm at about 60% now.  I don't imagine I will ever be back at my old 100%, but I'll settle for where I am--even better if I can get to 80%.  I am nowhere near as tired. 

 

On a recent business trip with my husband, he took my hand and thanked me for coming back to him. He said he had missed me... "because I had gone silent on him."  How could I have let myself drift so far into the Black Hole--way past the depths of the Blue Hole--without seeing I was even there?  It was as if I'd closed the shutters on myself and nobody was home anymore.  

 

Well it was partly, I admit, because I was loathe to admit that I needed antidepressants.   Those things were for mentally ill people, not me.  I was wrong.  

 

I'm not saying that your Dad's issue is depression, all I'm saying is that it's worth a look at.  Look under every moss covered rock he has, until you reach the very end of the river.  For me, fatigue and depression went hand-in-hand.  

 

Good Luck dear!

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#285 siak

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Posted 03 May 2015 - 06:08 PM

Kim,

Thanks once again for taking the time and energy to post something that will help so many people. It must be Divine Intervention or something because I thought that you were answering a post I made but when I looked at the ones you were answering, they were not mine. You seem to have described what I am feeling right now. It is not so much that I think the things you said to check ( Iron, b12 etc) are deficient, but that someone else has felt like I do after DBS. I will ask my dr. to check the levels and be sure to take care of it if that is the problem. I also am not sure that my lack of energy can be all put down to depression, either. However, I have been on zoloft for many years and the doc wanted to increase the dose. I tried but i felt more tired so I went back to the previous level. Right now I am still willing to try again, but I need some medical person to take charge and find out what is wrong with me. Anyway, what I am trying to say is that I am still in the deep hole that I cannot get out of and just typing this makes me cry. Some days I don't feel like the DBS did anything but make me a worse person, although it is nice to be able to walk again. The problem is that now that I can walk, I am too tired to walk or do anything else. Thanks for the positive words to help others. You are a special person.



#286 KimAgain

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Posted 03 May 2015 - 07:41 PM

Siak Dear,

I so feel for you.  I myself have had occasions where I've questioned whether DBS helped... but, then, I find my sweet spot and, it's the greatest thing since sliced bread again!  

 

NO PRESSURE, but, if you think it might help, I'll message you my phone number--call and we'll compare notes.

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#287 FlyBaby

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Posted 03 May 2015 - 09:20 PM

Same here...... on the phone number and help. I know I need to make an appoint. with my PCP to check my vitamin levels as well...... I just need to remember...LOL, maybe I'll have my DW post it on the monitor....


Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#288 waruna01

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Posted 04 May 2015 - 08:59 AM

Hi siak, did you have DBS to STN or GPi? Did you discuss your neurologist if your Parkinson medication dose is adequate? Did they ever did a post DBS MRI scan (with special precautions) or CAT scan to see if they have turned on the best electrodes?

 

Kim and Michael, can you also share weather you have DBS to STN or GPi and went through these procedures?



#289 FlyBaby

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Posted 04 May 2015 - 10:08 AM

I have bilateral STN leads, and although I have not had an MRI, they did do a CAT scan before I left the hospital to verify lead placement, and make sure everything was "ok". Thus far? I'm doing pretty good.... and I don't have any problem posting/sending my home phone number for anyone here that would like to discuss DBS, Parkinson's, or anything else.....


Edited by FlyBaby, 04 May 2015 - 10:10 AM.

Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#290 KimAgain

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Posted 04 May 2015 - 09:07 PM

I, too, had bi-lateral STN leads.  It was explained to me that STN and GPi each have their merits, but for me the 27 person Vanderbilt DBS Conference Committee weighed the STN vs GPi options and, taking all things into consideration (symptoms, medications, gait, etc.), STN was the clear winner.  I did not have either a CAT scan or MRI after surgery - I was told that my lead placement (based on the therapeutic results) was excellent.  

 

I hope that helps!

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#291 siak

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Posted 04 May 2015 - 10:19 PM

Waruna01, As far as I know, I have the bilateral, STN, wires to one battery left side. The reason I say "as far as I know" is because I was never given any info afterwards. My husband was supposed to understand and remember immediately after the 5 hour surgery, (no pressure there) ! and the Medtronic rep was there but never met with any of us either. I do remember a CT scan afterwards to check lead placement.  I have heard that some patients have had the leads disconnected somehow and didn't understand why they didn't improve. It took quite a while for the problem to be discovered and I  don't know how or who figured it out. I don't know why but I have had 5 programmers so far ( I don't think this is normal) so there is not any continuity of care for me. Next programming session is in a few weeks and I will ask about the leads. Everytime except the most recent session I was able to feel the tingling in my hands when the stimulator was turned up. Maybe there is some thing not connected somehow. Oh and somehow, the doc switched the left and right electrodes so the programmers are puzzled everytime the side they expect to be effected is the opposite one.  



#292 waruna01

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Posted 05 May 2015 - 09:22 AM

You might want to go see DBS programmer Sierra Farris in Colorado. She is very good at troubleshooting DBS systems. Google her. She might be able to help.



#293 waruna01

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Posted 19 May 2015 - 09:26 PM

Yes!  It seems that my lack of energy and general apathy were for the following reasons...

 

  • Vitamin D deficiency
  • Iron deficiency
  • B12 deficiency
  • Depression

The first three, once brought up to a healthy level, made a difference.  About 30% difference.  The remainder, my neurologist suggested might be depression.  He wrote a prescription for Zoloft, but I said I would not fill it until I really felt I needed it.  Six months went by.  I was folding in on myself like a house of cards.  

 

I always thought--because I'd never suffered with it before--that depression meant, sadness.  What I have learned is that, for me, depression is defined as the almost complete loss of oneself... and the total inability to care where you have gone.  

 

A friend finally challenged me on the problem.  At a time when I should most definitely have been happy, she took me to one side and asked me why I was not.  I tried telling her I was, but she called me out, "I've known you a long time, Kim, why have you got a fake smile plastered all over your face?  Why is your smile not reaching your eyes?"   

 

Busted.  

 

For the first time, I voiced what I was beginning to see was a very real problem.  "I think I'm depressed.  I should be happy.  I am happy, in my head, but I just have no feelings inside me at all."  I told her what my neurologist had said and about the prescription he'd given me.  Her response: "What?! Why aren't you taking the medication?  Take the damned Zoloft!"

My husband heard her and we--all three of us now--had a "come to Jesus" moment over the issue, too.  Next thing I know, I have friends and family from all over calling me to ask why I have not done anything about the depression I was so obviously in?  I thought I'd kept it on the complete down low, nobody knew how I felt, really, but me.  Boy, was I ever wrong.  The cacophonous voice of my friends and family in unison...

 

"Take the Zoloft!!"

 

So, two months ago, I started on the Zoloft--at a dose, my neurologist told me, which was just a notch above that of water.  Within a month, I was about 25% better.  The dose was increased a tiny amount.  40% improvement within two weeks.  

 

A couple of weeks ago, I had my regular neurology visit.  My DBS is ticking along just fine (battery getting low at 2.88, but it could be another year before it needs replacing, he said).  He also said I looked better than he'd ever seen me and asked me about the depression.  We had an open, frank conversation about my struggles and, he increased the Zoloft dose some more.  

 

This morning, I was washing my floor... sort of a mindless task... but, something decidedly odd was happening I noticed. Sound was leaking out of me.  I was singing

 

I think I'm at about 60% now.  I don't imagine I will ever be back at my old 100%, but I'll settle for where I am--even better if I can get to 80%.  I am nowhere near as tired. 

 

On a recent business trip with my husband, he took my hand and thanked me for coming back to him. He said he had missed me... "because I had gone silent on him."  How could I have let myself drift so far into the Black Hole--way past the depths of the Blue Hole--without seeing I was even there?  It was as if I'd closed the shutters on myself and nobody was home anymore.  

 

Well it was partly, I admit, because I was loathe to admit that I needed antidepressants.   Those things were for mentally ill people, not me.  I was wrong.  

 

I'm not saying that your Dad's issue is depression, all I'm saying is that it's worth a look at.  Look under every moss covered rock he has, until you reach the very end of the river.  For me, fatigue and depression went hand-in-hand.  

 

Good Luck dear!

Kim

Kim, I hope you will periodically update us how Zoloft is taking care of your depression as well. I think depression is more serious than Parkinson’s.

My dad’s tremors tend to get worse when his mood is bad. When he is outdoors and happy, his tremors tends melt away. He is also suffering from lack of interest in doing day to day things now. I’m seriously considering talking to his neurologist about adding Zoloft. I really didn’t want him taking any SSRis but after reading your positive comments about Zoloft, I would like to bring that topic up when he meets his nuro again.Would really appriciate your feedback on zoloft.



#294 KimAgain

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Posted 20 May 2015 - 08:39 AM

Kim, I hope you will periodically update us how Zoloft is taking care of your depression as well. I think depression is more serious than Parkinson’s.

My dad’s tremors tend to get worse when his mood is bad. When he is outdoors and happy, his tremors tends melt away. He is also suffering from lack of interest in doing day to day things now. I’m seriously considering talking to his neurologist about adding Zoloft. I really didn’t want him taking any SSRis but after reading your positive comments about Zoloft, I would like to bring that topic up when he meets his nuro again.Would really appriciate your feedback on zoloft.

 

Well, here we are, a Zoloft update...

 

I'm at about 70 - 80% of what I used to be.  I find I am more inclined to socialize again and, I'm gaining interest again in things I had lost all passion for.  My neurologist told me when he prescribed the Zoloft, that he was giving me a dose "just a notch about that of water," because I have such a sensitive ecosystem that he felt it would be best to start me at the lowest level possible.  After a month, I started to see an improvement.  So much so, that I asked the doctor if an increase in dosage would inch me up closer to my old self than the 40% I had managed to reach.  My doctor told me that, usually, PD patients are routinely started at a dose of 100mg a day, so we decided to increase to 50... then 75... and, I am now at 100mg daily.  I've been taking them for nearly a month.  My doctor says it could take a couple of months to see the full effect.

 

Am I me again? No.  I doubt I'll ever be that.  But, I'm functioning.  I'm able to make myself do things again... I planted a small garden, have taken a few business trips with my husband, and I'm more active again (in fact, I've lost weight), and I'm a lot more sociable than I had become in the bottom of the Black Hole I was living in before the Zoloft.

 

Now, side effects.  So far, only the one:  If I don't take the meds with food, I get wicked acid reflux.  I'm not big on breakfast, but an apple with my meds will do the trick. I'm not generally prone to indigestion or maladies of that sort, so when it happened a few times and I was chewing antacids like candy, I realized it was the Zoloft.  So, I started taking the pill with food and that solved the problem.

 

One cautionary note:  I don't know if this would be the case with everyone, but one day, on a recent trip with my husband, about mid-morning, I noticed I was feeling super stressed, anxious, and antsy.  I couldn't understand it because we'd been having a wonderfully stress free, relaxing trip.  Then, it hit me... I remembered taking my 8 o'clock a.m. Sinemet, but not my Zoloft.  I'm exceptionally good at taking pills on time and as prescribed, so it was soon very obvious to me why I had become distracted and that I had not, in fact, picked up the second pill and taken it.  I remedied the problem immediately and was feeling back to "normal" within an hour.  Lesson learned:  Do NOT miss a dose or stop abruptly!  (Speaking for myself, at least.)

 

The verdict, according to family and friends:  I am back.  Laughter actually reaches my eyes again now.  I talk on a long road trip again, instead of gazing out of the window, seemingly lost somewhere in the ether, but really uninterested in speaking.  I sit outside and enjoy reading in nature, rather than stuck inside, hiding away. 

 

Frankly, I don't believe I will ever be the same person again.  But, as we age and learn, grow and evolve, are any of us?  Am I changed entirely because of the Parkinson's?  If I am, is it all bad, or am I somehow an improved version of me with this albatross on my back?  Perhaps my patience and understanding has improved, partly because I am older and, partly because I have a burden to carry that makes me look at others and see or imagine the burdens they too haul around--willingly or unwillingly?  

 

I do know this:  Depression has been the greatest nemesis to battle in the grand Parkinson's scheme of things and, if you or someone you like might be, or think you might be, suffering (and, make no mistake, suffering is what you do) with this affliction, for heaven's sake, talk to your doctor.  You may do as I did, get the pills and refuse to take them for six months!  You may have to try one or two different prescriptions if you have trouble (which was my personal dread), but surely, surely your joy is worth the effort?

 

Above all, don't allow "shame" to be part of your vocabulary when it comes to depression.  Life is too short!

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#295 noworkky

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Posted 20 May 2015 - 09:05 AM

Very moving, honest, and useful post. I am glad for you. Thank you for sharing.


dx: August 2013  2 days before my 63rd birthday - 1st symptoms 2012 weakness right arm/hand and shuffling gait

 

med: Azilect  1 mg  1x a day,  Sinemet  25/100 2 mg  3x a day 

 

Stopped wearing Neupro patch recently - 8mg patch caused severe left axis tilt and rotation

 

other meds:   Tekturna for HBP,  Warfarin to prevent PE caused by genetic clotting disorder

 

other medical issues: Hyperparathyroidism, Kidney stones, arthritis, spinal stenosis

 

treatment: physical, occupational, and speech therapy. Swallow test.

 

doctors: MDS, Internist(PCM), Neurosurgeon, Endocrinologist, Orthopedic Surgeon

 

Insurance: Tricare Prime

 

Retired MSGT, US ARMY   Retired 911 police/fire dispatcher                                                                                     

 

 


#296 mickirose

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Posted 20 May 2015 - 11:36 AM

Kim, you continue to inspire me .  Recognizing our inner self and taking measures to improve that self is being our own best patient advocate.  Thanks for reminding us. So glad to hear you are feeling better,  Hugs, Micki


64 yrs.old   Presented with R hand tremor 2002 Dx'd 2004  Multiiple meds gone through and tossed due to adverse side effects . Presently on Sinemet 1 1/4 25/100 7x/24 hrs., Paxil, lotrel, Lipitor,Prilosec. Have moderate bilateral tremors, rigidity, bradykinesia, moderate dyskinesia during "ON" time, poor fine motor and poor manual strength esp. on left. Slight softening of speech and pronunciation. Handwriting and computer use issues. DBS in near future.  Nana of 4 little beauties under 8 and 1 soon to arrive! Tai cHI for health and balance


#297 waruna01

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Posted 21 May 2015 - 01:53 PM

Very inspiring post Kim. We talked to my dad’s nuro yesterday and she prescribed him Effexor. It’s a SNRI where Zoloft is a SSRI. I wonder if he could get the same effect you are having from Zoloft by taking Effexor. If you ever get a chance to talk to your doctor again, I would really appreciate if you could get his feedback on Effexor whether it is just as good as Zoloft for Parkinson’s patients.



#298 KimAgain

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Posted 22 May 2015 - 08:33 AM

Micki!  Surgery soon?  I'm in the process of making some DBS adjustments and a Sinemet change--it's too early yet to talk about because, although I'm doing better already, I am experienced enough at this now to know that a step forward this week may be a shuffle backwards next week!  But, as soon as I have a definitive result, I'll share.

 

An update on my battery:  I am in my 7th year since surgery and my battery is currently at 2.88.  The Medtronics rep told me to schedule surgery when the level drops to 2.60.  However, when I saw my MDS last month, he said, "No, that's too late, call me at 2.70 so we have plenty of time to schedule surgery."  I asked him how long he thought it would be and he said it's hard to judge--could be the next few months, could as much as a year.   Not bad, considering they estimated a 3 to 5 year lifespan on the battery when I had it implanted.

 

 

Very inspiring post Kim. We talked to my dad’s nuro yesterday and she prescribed him Effexor. It’s a SNRI where Zoloft is a SSRI. I wonder if he could get the same effect you are having from Zoloft by taking Effexor. If you ever get a chance to talk to your doctor again, I would really appreciate if you could get his feedback on Effexor whether it is just as good as Zoloft for Parkinson’s patients.

 

 

I plan to write to my MDS and ask him!  As soon as I get an answer, I'll let you know.  :razz:

 

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato





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