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I survived DBS...
created by Kindle July 25, 2011

Tags for this topic: Deep brain stimulation (DBS) (3)
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Add to My Favorites Saving... Jul 25, 2011 06:44PM Kindle
First Symptom: 10/08
KindleSex: F Data Quality: 0 stars Parkinson's: 2 yrs Hoehn-Yahr 1 Type: Parkinson's disease On Mouth/throat: none Arms: mild Chest: none Legs: none

68 posts , 37 helpful marks I just did Unilateral Thalamic DBS one week ago, and wanted to share my experience with anyone who is interested. I have never been diagnosed with Parkinson's disease, although the doctors are always quick to tell me I may have it "some day". I had a severe tremor on my right side (leg and arm), and muscle contractions on my right side.

DBS was first scheduled for July 6, at UVA (University of Virginia) which is 3 hours from here. My husband and I left at 2 the day before to drive over there, and as soon as I got in the car I called to the neurosurgery department because I wanted confirmation that they had gotten preauthorization for the surgical procedure. (Previously they had only told me they would call me if it was denied or there was a problem - in other words, no news is good news. I'm an accountant, and I wanted to hear the words that it had been authorized.) I was told it wasn't authorized yet, but they were working on it and it should be fine, so we just kept going. Three hours and three phone calls later as we pulled into the parking lot of our hotel, they called and said they had to cancel the surgery because the insurance company hadn't gotten back in time. AGGHHH! It's hard enough to get yourself emotionally prepared for this! Needless to say my husband and I were very frustrated, ended up staying the night in the hotel since we had to pay for it anyway, and came back home the next day.

As soon as I got home, I called my insurance company, and at 11:00 they said, "it's authorized!" When I asked them when, they said at 9:00 that morning. I wanted to strangle somebody.


The consolation prize was that the neurosurgeon said he would install both the electrode and the neurostimulator in one surgery, and my surgery was rescheduled for July 18.

So on July 17, we are on the road again...I was told nothing to eat or drink after midnight...I could drink water only up until 3:30, and had to be at the hospital at 5:30.

We were there on time, and were quickly taken up to the surgical floor. For the next hour I did a combination of changing into a hospital gown, having an IV started, vitals taken, and everyone on the surgical team stopping by to introduce themselves, to make sure I was the correct patient, to confirm what was being done to me, to confirm I hadn't had anything to eat and drink...

Somewhere around 6:30-7:00, I got wheeled into the room where the stereodactic frame was so they could install that. I had 4 shots of lidocaine on my head, and then it was literally screwed onto my head. Honestly, I didn't feel a thing other than the shots. And in April I had just completed 12 weeks of treatment for myfascial pain dysfunction (trigger spots), and so I quickly got over my fear of needles from that. The injections in the head didn't even phase me. My doctor told me that putting the frame on was probably the most painful part of the procedure.

Then it was downstairs for a CT scan with the frame on. I read somewhere previously that that was so they could get gps readings of your brain to find the best angle to put the electrodes in. Then it was one more stop back to my room to say goodbye to my husband, and it was off to surgery.

Now I was not anesthetized at all except for local anesthetic, except for the very end when they tunnel the wires and install the neurotransmitter. So I could hear all the conversation in the room, and my neurosurgeon was very good at narrating what was happening. I knew when they shaved the area, did the incision, could hear the suction thing running, and (this was where I almost lost it) WHEN THE DRILLING WAS HAPPENING! That part just about did me in. It sounded like a jackhammer was going against my head! It was so LOUD!! I was holding the anesthesiologist's hand on my left side, and the Medtronics rep on the right, and I'm sure they were very happy when I finally relaxed. I heard the anesthesiologist say, "her blood pressure is rising! Do you want me to give her a beta blocker?" To which the neurosurgeon said no, he was almost finished.

I felt absolutely nothingwhen they put the electrodes in-not pressure, nothing! I didn't even know they had done it until the three surgeons were standing in front of me (1 attending and 2 residents) waiting for the programmer to do his thing. Now, before I tell you about the next part, let me tell you about my symptoms. I had a very severe right sided tremor. My medication (sinemet/klonapin) were only good for at the most 5-6 hours, and even with that I still had tremor, just somewhat reduced. I always have had muscle contractions on the right side - primarily my right shoulder blade. That problem resulted in myfascial pain dysfunction-severe shoulder pain from trigger spots. I had just finished 12 weeks of treatment for that. The 2nd week in June my right foot started turning in severely so that I couldn't walk on it in the mornings until I had taken my first sinemet. That was happening almost every day. So I had bought a set of crutches just to get around in the morning. I'm an accountant, and had reduced my work hours to 5-6 a day (the amount of time I could get out of the sinemet), but I was very borderline disabled. If this procedure didn't work for me, I was going to have to call it quits.

So my doctor nodded to the programmer, who "turned me on!" (I still think that's a funny expression!) And, within seconds, my tremor stopped. Completely. Unbelievably. I just couldn't believe it. Everything relaxed - all the muscles on my right side. I cried - I was totally overwhelmed emotionally. You spend a lot of emotional energy wondering: is this it? Is this as good as it gets? And trying to prepare yourself for the worst. I was never worried about the procedure - I was worried about the outcome. I couldn't bring myself to believe this was reallly going to work for me. (Maybe for everyone else, but not me!) I did the infamous spiral, and it was nice and smooth! I could write like you write on the blackboard. I was OK again. Then they turned me off.

From the time they wheeled me into surgery to that point was only 1 hour. Soon after that they put me under to finish the rest.

I woke up in the post-anesthesia care unit, and was there for several hours before getting taken to an actual room (not ICU, just a normal room). I had compression units on both legs to make sure my blood kept circulating. I was given heparin, an antiobiotic to fight off any staff infection, and I can't remember the rest. I was very tired that day, into the next. I had an MRI that night which was very uncomfortable, and the next morning my doctor told me no swelling, bleeding, and that the electrodes had good placement. My surgeon told within a week I would feel perfectly fine and could do anything I wanted within reason. When I asked about work, he told me to wait for the turn on for that one.

I was discharged the next day, and felt every bump on the three hour trip from the hospital to my house.

By day 4, I just felt a mild discomfort where the neurotransmitter was installed. By day 5, I felt perfectly fine.

Just from the surgery, my symptoms have been greatly reduced. I understand this is the "honeymoon period", and I'll take whatever I can get.

My turn on date is August 2 - can't wait.

The neurotransmitter is an Activa PC. It's bigger than I thought it would be, and it does stick up from your chest a little. I also notice the weight, but I'm pretty small (5'4", 118 lbs.) The only problem I've had post-surgery is I feel something pushing against my throat on my left side (the side the neurotransmitter was installed), which affects my swallowing and speech. It could be drainage, swelling, or something else. I will ask the surgeon when we visit next.

Let me head was not shaved. They just did a little bit of shaving in the same area as my natural part. I've only been home a week, and anyone who has seen me since then who didn't know I had gone through the procedure didn't even notice. But, I will comment, the goop they put on your hair for the surgery makes your fair feel like straw! Then you can't wash your hair for so many days. Definitely a challenge if you have any length at all!

That's all I can think of for now. I've gotten a lot out of reading other people's stories, and wanted to give back if I could.

9 | Mark this post as helpful ..Jul 26, 2011 12:26AM vigwig
First Symptom: 04/98
Dx: 07/98
vigwigSex: M Data Quality: 0 stars Parkinson's: 13 yrs Hoehn-Yahr 3 Type: Parkinson's disease On Mouth/throat: mild Arms: mild Chest: mild Legs: mild

1861 posts , 1159 helpful marks Kindle,
I am amazed at your recall of everything. It was so good of you to write down as much as you did. I remember the sign-in desk, or counter, and the people there, the friendly faces, the nurse who got me ready with thrombosis hose and gown, IV and all that. Then being wheeled out to be parked in the hall alone for awhile like a railroad car on a siding. Then two nurses who came around to survey what they were going to shave and me asking them to "take a little off the sides," knowing that Dr Simpson would cut it all off when I asked him that beforehand and him saying that turning people out with half a haircut wasn't his style. I considered it part of the stuff you put up with to get the operation done without any complications. Then the anesthesiologist and me confirming that Dr Simpson's first name wasn't Homer. There was a lady who came and said was it alright if she observed because she was with the manufacturer (I have an ANS unit) and I referred to her as a government agent. It was a scary thing to go through. I had an old-fashioned halo that was screwed to my head. The drilling WAS like a jack-hammer and at one point I asked him if there was any "thing" left he could give me as a souvenir and his reply that there was nothing to save.

There was also a nurse holding my hand and relaying info between patient and surgeon. I asked for her to come back and holdmy hand wen she left for awhile; I was in need of childish reassurance. Then I conked out and came to in the recovery room. After some jocularity on my part with whoever would listen to my jokes, they finally found me a place in NICU (no, not the neonatal one) and I was allowed to have my mp3 player and about 1 a.m. they made me turn it off because my singing along with my oldies was not well received. I went home later the second day.

I came back in 14 days to have the second stage done. It hurt afterwards while the first one didn't. I went home the same day as I went in for the second one. I was programmed in December, the whole operational thing taking 5 or 6 weeks. I was a poster child for DBS. Still am.

Have had the batteries and wiring replaced once already. The conventional wisdom is ANS batteries wear out kind of fast. And you can break those wires. Enough already.

4 | Mark this post as helpful ..Jul 26, 2011 08:54AM Kindle
First Symptom: 10/08
KindleSex: F Data Quality: 0 stars Parkinson's: 2 yrs Hoehn-Yahr 1 Type: Parkinson's disease On Mouth/throat: none Arms: mild Chest: none Legs: none

68 posts , 37 helpful marks It sounds like you recalled quite a bit also! (Are you sure that hand holding thing didn't have a side motive?!)

I was much more sore from the neurostimulator that from what they did to my head. My head just had a dull headache for a couple of days, and then it was fine. And really, the neurostimulator was really sore for only 3 days, which is nothing to complain about. The 4th day was just mild discomfort.

So far so good. If I can get this pressure on my throat addressed, I'll be good to go.

1 | Mark this post as helpful ..Jul 26, 2011 08:54AM Kindle
First Symptom: 10/08
KindleSex: F Data Quality: 0 stars Parkinson's: 2 yrs Hoehn-Yahr 1 Type: Parkinson's disease On Mouth/throat: none Arms: mild Chest: none Legs: none

68 posts , 37 helpful marks I forgot to mention a weird thing that happened the night I was in the hospital. I had the surgery in the morning, and about 5:00 pm I started hearing a ticking sound (like a clock ticking). I looked around the hospital room trying to figure out where it was coming from, and asked my husband if he heard it (he didn't). Eventually I figured out it was coming from my head! I talked to the nurse about it a couple of times, and she talked to the neurosurgery resident, who said it was nothing to worry about. I saw my doctor in the morning, and he said it was from loss if cerebral spinal fluid, and said it refreshes within a day. And, I didn't hear it again. So I guess he was right.

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this post was last edited by Kindle on Jul 28, 2011 04:09PM
..Jul 26, 2011 09:28AM Mdgirl51
member since Nov 2008
Mdgirl51Data Quality: 0 stars Sex: Female Age: 53 Condition: Quality of Life:
Social: Unreported Mental: Unreported Physical: Unreported I am: None

266 posts , 163 helpful marks YAY!!!!!!!!!!!!! So happy you survived the DBS!!!!! I've been thinking about you and am so pleased with your outcome! I pray to God every day that Jeff will have great results when he gets his approval, if it ever happens. They are giving us the run around and Jeff just steadily declines...SO HAPPY FOR YOU KINDLE!!!!!

1 | Mark this post as helpful ..Jul 26, 2011 09:46AM HarleyNutz
First Symptom: 02/94
Dx: 01/95
HarleyNutzSex: F Data Quality: 2 stars Parkinson's: 17 yrs Hoehn-Yahr 2 Type: Parkinson's disease On Mouth/throat: none Arms: none Chest: none Legs: mild

628 posts , 759 helpful marks Kindle -- GREAT NEWS! Your description of the process and experience was EXACTLY like mine with one exception -- I was sedated enough during the drilling that I remember nothing about that part, which I was thankful for since I've heard that's the worst part. Your detailed description will be very helpful to those who are considering DBS but are concerned about the process. Good luck with your programming!


1 | Mark this post as helpful ..Jul 26, 2011 09:50AM amh612
First Symptom: 04/10
Dx: 09/10
amh612Sex: M Data Quality: 0 stars Parkinson's: 1 yr Hoehn-Yahr 3 Type: Parkinsonism (unknown cause) Mouth/throat: none Arms: mild Chest: none Legs: mild

10 posts , 8 helpful marks Most of the patients on this forum report really good results from DBS, which is encouraging. However, my neurologist has told me horror stories about some Parkinson's patients who've had the procedure. Incidentally, were you able to drive before the DBS?

1 | Mark this post as helpful ..Jul 26, 2011 04:32PM fowki
First Symptom: 01/98
Dx: 05/06
fowkiSex: F Data Quality: 0 stars Parkinson's: 13 yrs Hoehn-Yahr 3 Type: Parkinson's disease Mouth/throat: none Arms: moderate Chest: none Legs: mild

25 posts , 15 helpful marks I, too, survived DBS. It has been a lttle over a year (06/22/2010) and I am 100% DRUG FREE!!! I tell everyone that it is nothing short of a miracle.

I had a very similar experience, except that I was under when they placed the frame, and was brought out in the O.R. I tell people that the drilling was like having a giant MixMaster in my head. I never realized just how much the skull muffles sound, until I had that done!

I also got "turned on" in the O.R. and it was a very emotional moment for me too! I begged to be left "on", but, alas, no one would cooperate with that request....

I had both procedures on the same day, so they put me back under to implant the IPG. That was really the only pain I had, the IPG surgical site. I didn't expect it to be so big, even though I had seen one of the units at a symposium. Now I can "see" it under the skin, but my daughters have both told me that looking at me front-on, if they didn't know to look for it, they wouldn't notice it.

I was in the hospital just overnight. Less time for brain surgery, than for my Aunt's knee replacment!

I was going for programming every two months, but this time I have gone four months! My next appointment is the first week of August. The worst part of programming is when they turn the settings almost "off"....I am amazed that I ever lived "like that"!

There needs to be DBS support groups where those who are pending DBS can talk to those of who have survived it....the good and the bad experiences.

5 | Mark this post as helpful ..Jul 26, 2011 08:21PM Mintex
First Symptom: 06/05
Dx: 12/08
MintexSex: M Data Quality: 2 stars Parkinson's: 6 yrs Hoehn-Yahr 3 Type: Parkinson's disease On Mouth/throat: mild Arms: mild Chest: mild Legs: mild

851 posts , 1245 helpful marks Great news Kindle!


Mark this post as helpful ..Jul 26, 2011 11:29PM blader44
First Symptom: 12/06
Dx: 03/07
blader44Sex: M Data Quality: 3 stars Parkinson's: 4 yrs Hoehn-Yahr 2 Type: Parkinsonism (unknown cause) On Mouth/throat: none Arms: mild Chest: none Legs: none

503 posts , 502 helpful marks Now Methodist Medical Center in Brooklyn now has DBS surgery.

Maybe some local candidates may not have to travel far out-of-town

for the procedure. I personally am not ready for it, but for someone

it may be a useful thought.


Mark this post as helpful ..Jul 27, 2011 01:00PM rgduncan
First Symptom: 02/09
Dx: 07/09
rgduncanSex: M Data Quality: 2 stars Parkinson's: 2 yrs Hoehn-Yahr 1 Type: Parkinson's disease Off Mouth/throat: none Arms: mild Chest: none Legs: none

100 posts , 104 helpful marks Thanks for recording your DBS experiences kindle. I expect to "go there" some day and your account was very helpful.


1 | Mark this post as helpful ..Jul 28, 2011 04:16PM Kindle
First Symptom: 10/08
KindleSex: F Data Quality: 0 stars Parkinson's: 2 yrs Hoehn-Yahr 1 Type: Parkinson's disease On Mouth/throat: none Arms: mild Chest: none Legs: none

68 posts , 37 helpful marks AMH612-I could drive, but my right leg tremor was getting so bad I started driving with my left leg! (I don't recall that being illegal!) I really didn't feel comfortable doing that, but I was still trying to work and had to get back and forth. Anytime my husband and I were together he drove.

No one has told me I can't drive since the surgery either. I've just been cautious, and didn't drive until yesterday (day 10).

MDGIRL - Keep praying and I will for you also. The wait can be agonizing.

Thanks to everyone else for the good wishes...

Mark this post as helpful ..Jul 28, 2011 06:57PM Mdgirl51
member since Nov 2008
Mdgirl51Data Quality: 0 stars Sex: Female Age: 53 Condition: Quality of Life:
Social: Unreported Mental: Unreported Physical: Unreported I am: None

266 posts , 163 helpful marks AMH612...I can't understand why your neurologist would tell you horror stories about dbs. Yes, any surgery has it's risks but man, I have met sooo many people who have said it's "life changing". Jeff and I can't wait for the day to arrive, it could be as early as 6 months!!!! His neuro suggested it, even said he should have done it yrs ago........

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