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TexasTom

Med's the day after DBS?

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TexasTom    706

Had DBS leads installed on Wednesday, next morning was interesting. Just the lead install had suppressed tremor quit a bit, but what I didn't expect was to get nausea from my goto Sinemet/Comtan. I take those like clockwork. Wasn't thinking to cut them back the morning after surgery.  Oh my.

 

It was too much for my system. So yesterday and for today I've cut back to just one sinemet (25/100) every six hours to see how it goes.  My normal is 2 -25/200 Sinemet & 1 200mg Comtan every three hours with a steep drop off when meds wear off.  5 times a day; then 50/200 ER at bed time.

 

Other odd thing was no idea what twilight medication I was given during surgery, but BEFORE lead placement no rigidity nor tremor.   I did not expect that at all as they wanted to test tremor, but I was super calm. Normally with the situation it would have been extreme, so all I can think is something I was given worked fantastic on tremor.  Admitted not the time to wonder "did I even need to do this".

 

Thursday morning was interesting as I woke up with no rigidity nor dystonia doing its pretzel twist. Even taping my finger to my thumb.. rapid with no skips.  Normally I try to tap as fast as I can but get a slow one two three pause one two pause, pattern. Nothing like that at all but fast consistent pattern.

 

If this is even the slightest indication of what things will be like once the neurostimulator is installed and turned on it will be worth it.

 

Last weird thing of the day: Ben and Jerrie's Ice Cream. Half baked flavor. Love the texture of that stuff, but had my 1/2 cup last night and noticed FLAVORS It was almost too intense. Maybe just brain trauma, or who knows what, but seemed so odd to have that taste sensation. Maybe just joy from being able to hold food down as I hadn't eaten for two days (surgery started at 2:00PM, next day my sinemet and food gave me fits). Seems odd.  Only time will tell if that is temporary.

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MurrayPD2    219

Thanks for the post! Good to hear.  I have heard of the honeymoon experience when just the leads are installed.  I guess you are talking about actually running the whole system, right?

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Oakman    39

Yep, that post surgery feeling is amazing. I had two Sinemet tablets over a period of 24 hours afterwards. My "honeymoon" period lasted almost a month.

 

Best of luck with your recovery.

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TexasTom    706

This was just lead placement.

 

Simulator/battery will be installed on Wednesday.

 

Initial programming in two weeks.

 

I did not think just lead placement would have this effect on me.   For now I've dropped back to just taking one Sinemet every six hours, still adjusting. Not driving or going anywhere, but hands are calm enough to use the keyboard with little tremor. 

 

I am still shocked how fast I can open and close my hand. Rapid is not something I would use to have described my opening and closing of my hand. Note leads are GPi placement as my MDS thought it was best for Parkinson's and Dystonia.   I'm just amazed at the lead placement. I keep doing finger to thumb tap looking at my hands with a "am I really doing that?"  Hindsight I wish I had recorded some of these things with a video recorder so I would have a before and after visual.  Just incredible.

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I had my Surgery on the 10th August they also put the stimulater in the same day.What I'm finding is getting the right ajustment. I just get stiff and getting up and down from a chair is very hardn.Perhaps I'm expecting too much.The only medication I take is 1/2 sifrolER a day.My reading is 1.80 2.50

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TexasTom    706

I had my Surgery on the 10th August they also put the stimulater in the same day.What I'm finding is getting the right ajustment. I just get stiff and getting up and down from a chair is very hardn.Perhaps I'm expecting too much.The only medication I take is 1/2 sifrolER a day.My reading is 1.80 2.50

 

Good Morning Win,

 

Getting the programming down is the hardest part.  One of teh best suggestions/recommendation is make a daily log of activity, diet, and issues / overall well being.   Only do the "at home" adjustment once a week. Keep that log.  Hopefully you are seeing your MDS every six weeks (or sooner) to do any larger adjustments.  Before each appointment scan through through your log and write up a quick summary for your MDS.

 

It was amazing not to have the stiffness after surgery, but this morning I am slightly more sore. Still having a hard time taking my usual dose of med's, so have cut way back for the next two weeks.

 

Pool pump, washing machine, and septic all having issues this week. Oh fun. Should be simple repairs, but no time to address.  Only one using the pool this time of year is my Golden Retriever, so not a priority this week.

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TexasTom    706

Pool pump, washing machine, Golden Retriever... hmmm.  :-P

 

See a theme! We actually have four dogs. Two Goldens, One Golden/Husky, and One "there is a cricket on the lawn" Great Pyrenees.  The GP would sound an alarm for even a leaf landing on the lawn (any new noise, and he is LOUD!). 

 

Just addressed the pool pump. Fall, too many leaves. Didn't empty the baskets for a few days. Cavitated the pump, which boils the water in the pump housing. Deformed (Melted) filter basket let leaves fill into the front of the impeller.  Six bolts, pop it off, clean impeller... pump functioning! I know I am moving better as I am still on reduced medication and could use a wrench to do that!  A month ago I would have called a pool place. :) Stiffness and tremor are creeping back up on me post surgery, but still doing pretty well.  Simulator surgery is tomorrow!

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TexasTom    706

Slowly tapering down on medication, waiting for Stimulator turn on.

 

Catch is I had forgotten about night sweats! Woke up in a pool of sweat with a "what the heck is going on?"  I was so well controlled with

my medication I had forgotten about that. Suddenly urinary issues are back. Thankfully not at the some moment.  How could have I forgotten

those items.

 

Fun times!

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MurrayPD2    219

I found out yesterday I am getting a DBS in Jan.  2 leads in for one surgery, and the battery in a week later.. Not sure when I am  getting programmed.  They make the recovery sound simple, but it sounds like the programming is the real recovery issue.  That is worrisome. 

 

I am glad to hear they won't keep me awake or wake me up at all.  That will be nice

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waruna01    44

I found out yesterday I am getting a DBS in Jan.  2 leads in for one surgery, and the battery in a week later.. Not sure when I am  getting programmed.  They make the recovery sound simple, but it sounds like the programming is the real recovery issue.  That is worrisome. 

 

I am glad to hear they won't keep me awake or wake me up at all.  That will be nice

be careful getting both leads in one surgery as it can lead to speech swallowing gait issues. You might want to have them spread out over 2. Most centers put 2 leads anyway even if the marginal gain from on the opposite side is minimal which may not worth the trade off if side effects is more than the benefits. Doing 1 at a time is the safe approoch based on what i heard from dr okun. It can also help them avoid any bleeding/stroke risk by doing 1 at a time. 

Edited by waruna01

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TexasTom    706

be careful getting both leads in one surgery as it can lead to speech swallowing gait issues. You might want to have them spread out over 2. Most centers put 2 leads anyway even if the marginal gain from on the opposite side is minimal which may not worth the trade off if side effects is more than the benefits. Doing 1 at a time is the safe approoch based on what i heard from dr okun. It can also help them avoid any bleeding/stroke risk by doing 1 at a time. 

 

There is a huge caveat, along with everyone is different.

 

My left side is where Parkinson's first was noted. Both sides greatly affected.

 

My right side has much more dystonia issues.

 

No friggin' why would I wait a year between surgeries.  Every case is different, but wide awake for brain surgery for six hours get them both done, please!  Less risk for infection with one surgery.

 

For me, glad I had both sides done at the same time. Less fuss, and go on down the road. Keep mind I'm 58 and still working, so about four weeks down time post brain surgery.  I've pushed it with the battery (I'm tender) but really four (5 to 10 lift limit) to six weeks (full workout).  Going stir crazy, so doing a full set of 20 jumping jacks at two weeks wasn't a good idea!

 

 

 

Neurosurgeon admitted that 20% do fine with surgery on just one side.

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TexasTom    706

I found out yesterday I am getting a DBS in Jan.  2 leads in for one surgery, and the battery in a week later.. Not sure when I am  getting programmed.  They make the recovery sound simple, but it sounds like the programming is the real recovery issue.  That is worrisome. 

 

I am glad to hear they won't keep me awake or wake me up at all.  That will be nice

 

Fully sedated when leads are inserted?  Asleep DBS?

 

As much as being awake for a six hour brain surgery is not fun, but having that feedback to confirm lead placement vs tremor and rigidity was worth it!

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waruna01    44

There is a huge caveat, along with everyone is different.

 

My left side is where Parkinson's first was noted. Both sides greatly affected.

 

My right side has much more dystonia issues.

 

No friggin' why would I wait a year between surgeries.  Every case is different, but wide awake for brain surgery for six hours get them both done, please!  Less risk for infection with one surgery.

 

For me, glad I had both sides done at the same time. Less fuss, and go on down the road. Keep mind I'm 58 and still working, so about four weeks down time post brain surgery.  I've pushed it with the battery (I'm tender) but really four (5 to 10 lift limit) to six weeks (full workout).  Going stir crazy, so doing a full set of 20 jumping jacks at two weeks wasn't a good idea!

 

 

 

Neurosurgeon admitted that 20% do fine with surgery on just one side.

 

I understand the feeling of going though brain surgery twice but if it does compromise your speech, swallowing, gait issues, hassle of second surgery may pay off. At UF center with Dr Okun's group, i was told that they do one side at a time because of this issue. 

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MurrayPD2    219

be careful getting both leads in one surgery as it can lead to speech swallowing gait issues. You might want to have them spread out over 2. Most centers put 2 leads anyway even if the marginal gain from on the opposite side is minimal which may not worth the trade off if side effects is more than the benefits. Doing 1 at a time is the safe approoch based on what i heard from dr okun. It can also help them avoid any bleeding/stroke risk by doing 1 at a time. 

I don't think I have control of that.  Since this is the VA outsourcing it.  I wonder how often this is an issue with two leads at once and how often this happened to someone who wasn't already having mild issues already.  I did see a video where a man's speech was affected, but everything else he had was much better.  So, he was still happy.  

 

It is difficult to say when my window of opportunity is gone to use this or if a cure or better treatment comes about in two years and I could have avoided it. 

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siak    43

Not to be a "half empty glass" person---But I read this conversation with great interest because it seems to me that there isnt much agreement between dbs centers or surgeons when it comes to the surgery. You are also right about not having much choice in the matter. When I did research before my dbs and asked my doc about the asleep/awake and all the other ways of doing the surgery, he told me that I could go somewhere else if I didnt want it the way he does the surgery. The same goes for the programming and aftercare. Every center seems to have a different way of doing things. I also wonder if many long term studies have been done on post dbs patients. I know that none is being done at my center and when I go online, I cant find much either. 

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MurrayPD2    219

There are studies out there, but not a large number.  In general, it seems the experience of the surgeon and DBS technician are the key.  They will get you the optimum placement, and the placement is a very critical part. 

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