Follow the DBS Road
 

I've been lurking this great forum for years, so I thought I was overdue contributing to it. Im documenting my steps through a DBS procedure at Vanderbilt Medical Center in a blog. I'll post updates to it as I proceed down the road if I'm able to. I have every intention of posting asap.

scottsuf.blogspot.com

Thanks,
Scott Suff

Blog update
Scottsuf.blogspot.com

scott,
your're a very good writer, wish it was on a different topic but thanks for sharing your DBS experience in such detail, it's of great value to me.

Scott,
I appreciate you putting yourself out there for us to follow and wish you great success with your personal DBS experience. Quick question I may have asked someone earlier, when you go to a Rock Steady session, are you On or Off medwise for maximum benefit?

Eric

I think being on is best. You could fall or hyperextend your knee. There is a bunch of footwork. Also it depends what your symptoms are. My left leg will go weak first, and that takes me out of the game for the most part. From trial and error I know on a decent day I can take meds at 1 PM on my way to class, complete the class by 330 and will need another round of meds by 4 PM. Then the positive effects of the class will extend me into the evening somewhat.
Hope that helps.

Blog update

Made it through Stage II. Team was pleased with results. If they were pleased I'm thinking I should be as well. Blog update in works.

A couple of pics while I work on the update, moving a little slower than before.
scottsuf.blogspot.com

Blog update
scottsuf.blogspot.com

Scott,

Thanks for taking us through your procedure, very unselfish and it will help those of us that will follow. Keep the sense of humor going. Hope the results are great when you get your battery....

Eric

It's a done deal! Stage III complete. What started as a nasty,rainy,Monday morning is now clear and Sunny, on the way home from Vandy. Already seeing and feeling good stuff happening to my body. The honeymoon effect is alive and well, and the Neuro surgeon said it's usually indicative of the results when I'm turned on . Don't want to curse myself but I have a glimmer of a sunny forecast now.😎Emotions running high!😥

Great news.....

He is absolutely right. Just don't make the mistake I made and
assume that everything will turn to roses on Day1 and stay that
way for the rest of your life. They told me it would be a PROCESS
and you know what, they were absolutely right.

I just came back from my 1st. 'adjustment' this afternoon. They
took the voltage up from 1.9 to 2.5 and I feel much better. I have
learned, however, that what is important is not what I feel like
at this particular moment but rather how I'm doing a month from
now, 2 months from now, 6 months, and so on.

blog update
scottsuf.blogspot.com

I had it done Oct 13 and have had a few adjustments already to get me up to 2.5 volts. I have dystonia where I can't move but now I can move all the time. I get up out of bed in the morning and go down the hall to the bathroom.
I still take some meds but nothing like before. It's not all rosy though. I get some headaches and muscle cramps especially in my thighs. My speech is slurred sometimes. I got the rechargeable battery and if had to do it again I would consider the regular one. I am a bad procrastinator but so far I have kept it charged. The first week after the operation is the honeymoon where it feels like it is working but that goes away as time passes and you heal more.
I was at the end of my rope before this and had no life whatsoever. This is not perfect yet but I would do it again. I already put on 20lbs of very needed weight.

Can't Believe It Either
 

Wow, I too had leads placed on 10/13. Currently at 2.5.
Speech is also a problem, although problems fluctuate
somewhat.

No muscle cramps that I can recall. I cry at the drop of a hat.

I'm going to borrow Jim's disclaimer; Please consider the
following information as my personal experience and in no way
a recommendation or suggestion for others to go down this road.
I am not a doctor. I am just a guy with PD.

1 capsule of Rytary 23.75/95 at 8 a.m., and 1 at bedtime.
Yes, a total of 2.

Currently experiencing approx. 85/90% tremor suppression,
which I can live with. Especially on days when I'm sitting at
home in pajamas.

No more complications with Rytary and Alcohol

After 9 am, I can eat as much as I want, as often as I want
(5 LB. gain in 4 days).

As far as I'm concerned, Dr.'s Kaplan, Fisher, and Griffith (Kansas
City area) are Superstars.

Key West tickets in hand for 1/7-1/12.

Hopefully further symptom degradation won't be too severe or
too rapid. Keep praying -

Were you taking Rotary before the operation. I never tried it although I tried just about everything else the last 23 years. Before the operation I was frozen every three hours after taking meds. Now I can move but take a 50/200 er every four hours. I feel the old me creeping back in the difference being I can move all the time. I am beginning to wonder if the meds are still adversely effecting me.

Is there a website for people who have had DBS. My next adjustment is in mid January but I can raise or lower the voltage a little as needed. thanks

National Parkinson Foundation Parkinson.org has a forum for DBS.

Thankfully in Austin, TX we have a "DBS support group" that meets monthly. Went last week, small turn out due to Holidays but glad I went.

Six weeks out after surgery. Honeymoon period has warn off, adjusting to the new me. Left hand ZERO tremor, right hand is very stable tremor at times.

Dystonia no longer an issue. Have not had any foot dragging or freezing (!!!). I can button a dress shirt on a bad day.

Currently at much reduced medication. My "on/off" transition is very mild (amazing).

Long journey to go, so far all it good. I was feeling too good and returned to exercising too soon. Brain swelling is real, so take it easy for six to eight weeks after brain surgery.

Yes, I was taking Rytary before DBS, but found it nearly impossible to use. The interaction with alcohol (half a beer) felt like it was putting me into a coma, and the interaction with food was hopeless.

I try to get to the blog every other day. If you need anything else let me know.

I'm 12 days post Stage III surgery (Vanderbilt ) with a couple questions. I was warned about stiffness in the neck but this feels worse than I thought might hit me. So, has anyone else experienced a stiff and tight neck after neurotransmitter insertion, from the extension lead having scar tissue build around it? I move my neck around frequently. When I get up I can turn my neck a full 90 degrees to the right, but to the left I might be able to get 60. What did you do? What was your outcome (positive I hope)? Sent surgeon pics, he thought it would resolve itself basically but repeat pictures next week.
Thoughts? Comments?
Merry Christmas from the hills of East Tennessee!

Scott - I don't recall any significant problems with neck stiffness,
so it may have been that it has subsided since surgery or it hasn't
been a problem to being with (lead insertion on 10/13).

I went to the chiropractor for the 1st time this week because of
lower back problems and the Doc whipped my neck around just
like old times....

My wires go down the left side of the back of my neck. My battery is under my left pec. I had the whole thing done in one day. The only problem I had was that they had to open up a space to work behind my left ear and after that would hurt like hell at times. That was when pain killers became good friends.
They did tell me that some people have trouble with the wires in the neck. Mine are a little sore still if I press on them but otherwise they never hurt. It's all less with the passage of time. (had mine 10/13 also)

My problem still is the effect that the old meds have on me. I am still taking 4 50/200 ER sinemet every day and they make my legs ache in the muscles. I can walk thanks to the DBS but I still have the feeling of dystonia still lurking.
I think food still effects me like before. I understand that DBS does not fix that.

That's interesting, I was told no neck adjustments.

I'm about 8 weeks out (Surgery 10/26; battery 11/2; programming started 11/9). Brain swelling can come down, but have dropped to 1/3 of my medications. Too little or too much caused stiffness, so quite happy to be on three 25/100 during the day. One 50/200 ER at night.

Battery location (pec), cable on left side of my neck. Best medicine is a great Massage Therapist. I've always had Dystonia issues, but really helps to get those knots out.

That's really interesting. I will ask the Doc during the 'adjustment' appt.
if I can DEFINITELY still see a chiropractor. I also couldn't believe what I
was hearing when I brought it up previously.

Once again, food seems to be the biggest challenge. I have gone back and
forth, desperate to find a combo that works. After the last change to 2.5,
I seemed OK, not great, taking the single 23.75 in the morning as well as
one at night. I'm still trying to get back to that after 'falling off the wagon'
last week and reverting to 5 (total) per day. But, last week I did have a
legitimate excuse, my mother was near death, with severe dementia. They
explained to me that they can program out much if not most of tremor, but
when it comes to high stress scenarios like the above, there is just so much
they can do. That makes sense to me. And even then I was at less than a 1/3 of the regimen before DBS. So, no, I will NEVER complain about that, or anything else that is part of the DBS experience, so far.

If somehow I can make the total of 2 work again, I really think it could be
a key for eliminating the overall food complications. My reasoning is one
capsule early, say 8 or 8:30, and one at bedtime, should allow me to eat
starting at 9 and on throughout the day, as long as DBS is adequately
doing it's thing. And by the time I take the 2nd capsule as I get ready for
bed, I will hopefully be asleep before the other complications return.

I will be ready to try 3, then 4, soon if the 2 'plan' fails me. NO complaints :)

sorry to hear about your mother. Unfortunately everything that happens in our lives has an effect whether they are good or bad. I lost my sister to cancer in August and haven't really mourned yet but I do break out crying every once in a while. My parkinson's was effected and still is I think cause I live alone so my mind goes wandering a lot. My mom at 89 still is not too bad but as my only family left I dread anything happening. I always had my sister to rely on. My doctor suggested that I might try an antidepressant. Does anybody take one that they had good results with? thanks.

just curious how many grams of protein you ingest in 1 serving? if you have to have a continuous supply of l-dopa getting into your brain to be functional and can't depend on l-dopa being stored in the brain, then eating too much protein even with a DBS can negate the affect of the L-DOPA from your meds. those little amino acids from your ingested protein compete for entry into the blood with the L-DOPA from your rytary thru the small intestine, same competition getting past the BBB and those AAs from your food will overwhelm the l-dopa from your pills and eventually the l-dopa in your blood will be broken down. So maybe try taking an extra sinemet 25/100cr or 50/200CR an hour before eating or at the same time to give you some extra l-dopa? might not help since this isn't much L-DOPA but since it released fairly slowly might be less chance of dyskinesias if your're worried about that.

You know, I think what Soccertese stated is absolutely correct.

Not sure why it didn't occur to me earlier, until I saw his Post.


Thanks!!!!!

just think about how little l-dopa your brain really needs. 18mg of long lasting requip is all you need, and i''m assuming there's a 1:1 equivalence between requip and l-dopa, i.e. only 1 molecule per dopamine receptor. so if your're at the point where your brain isn't manufacturing or storing l-dopa, you need a constant tiny supply getting to your brain. if you take too much you'll get dyskinesias so you take just enough l-dopa and it doesn't take much protein to interfere with this delicate balance. so the strategies have been eat too much protein and deal with the inevitable OFF's, i can be off for 4 hrs if i lose self control and eat a can of tuna fish. another is to eat very small amounts of protein and another of course is to eat more protein in the evening when being off isn't fun but manageable.
i have tried this and it has worked at time, if you know in advance when you are going to eat take more C/L 20MIN before you eat, starting with 50mg and advancing no more than to 150mg if 50mg or 100mg doesn't work. of course you have to be careful. you basically want to get a C/L headstart over the amino acids you are ingesting. if you couldn't take the extra C/L before you eat, then you can still take it within 2hrs after you eat. just a thought.

i can eat a meal of 3/4 cup of brown rice, 1.5 cups of mixed vegetables which can contain some legumes, i use frozen vegetables so the protein content is on the package, and add whatever protein i want to to get to 4grams of protein and this doesn't interfere. pretty boring. i do suffer thru many offs because i'm hungry!

i have friends with DBS who i watch in disbelief/envy eat a turkey sandwhich and have no off's.

me thinks you'll just have to bite the bullet, find out how much protein you can eat at 1 sitting and adapt recipes. i'll post a link to a site offering meals for pd'ers later.

Today I had a little setback. I found out I have an infection. That's nothing to take lightly.I had complained about a stiff neck and the dr was observing me. I had sent him a half dozen pics. A small spot on my head they pressed on, and it opened up.Then he pressed on the side of my head, and it was quite tender. The odd thing is when he pressed on the Neurotransmitter,it wasn't sore, and it had quite a bit of infection on it. They drained blood from me to use with cultures, to narrow the antibiotic down.When I come home, I'll be on a pic line to finish the course of treatment, over the next couple months.Not helping my cause!

Scottsuff,

Sorry too hear about your infection. From what I understand it usually starts in one place and follows the wires. The wires in my neck are still sensitive but don't bother me unless I push on them. So I don't. Going Wednesday for my next adjustment and will have them take a look see. On top of my head I have the bumps where the cage was screwed in to my skull.The doc said that these probably will not get much better. I'm a bit of a hypochondriac so all of this gets to me. Another reason I waited so long. They didn't shave my head like I thought they would because they only opened my skin where they drilled. Let us know how you are doing.

Hang in Scott, just a bump in the road to getting your life back....sending good thoughts your way....

Eric

again, thanks for sharing scott. i'm really benefitting from your experience as i'm sure many others are but for some reason won't click the thankyou tab.

Blog update Terrible Day
Scottsuf.blogspot.com

Ah Crap! It happens.

Did they have to remove the brain leads?

I just hope for the best, and a speedy recovery.

On the humor side of life, I was trying to figure out why your kids went to University of Texas, when you live in Tennessee. Oh, what... I'll just blame Parkinson's for that one. Super cool your daughter is going back to school to work on Speech Pathology.

I wish you the best.

Scott,
Sorry about the setback. Keep leaning on your great family, they will help you get through this. You are a strong, retired AF officer and will clear this hurdle. Good thoughts continuing your way.

Eric

Yep, they removed everything I heard that it happens to about 2% - 3%. I'm just a lucky dude. Your another Texan with UT confusion it seems.

Hi Scott - Just returned from Key West yesterday, very sorry to hear about the complications, please let us know when you start to feel better.

I do know one thing, the fact that you're a Vet and I'm not confirms that
you'll be just fine, just a matter of time. Hang in there, buddy, I keep finding
evidence of bizarre health issues that are cured somehow. And, I actually
hate to broach the following topic because I know many people will roll their
eyes or burst out laughing. But, I don't know of another online community
that will offer and intelligent response I've had ED since I was 40, and I
turn 59 next month. Since DBS, I have had no issues in that Dept. Has
anyone else had a similar experience?!

David

can't say i had a similar experience. sounds like you got the deluxe DBS. though
are you kidding? if not, you may have a "gold mine" there. just need to find a bioengineer who can wire one up without the need for brain surgery, find some investors ...

Well, I have to say, sounds like so much BS to me, too.

There has to be some kind of reference in the medical annals,
I just can't find one.

And yes, it didn't make sense to me to have that problem at the
tender young (LOL) age of 40, either, just like it doesn't make
sense that DBS would cure it. And just when you thought my
DBS 'experience' couldn't get ANY strange, consider the fact that
I had chronic skin diseases, with Rosecesia (red scaly skin- I know
that isn't the correct spelling) that has absolutely disappeared since
Oct. 16. However, for this particular problem, I recall running across
something that indicated this could be a early sign of PD, which does
make sense in my particular situation. Some others, such as increased
amounts of body hair in undesirable locations that are lessened
considerably after DBS may actually get me banned from the board
(LOL) but guys and gals, I couldn't make this stuff if I tried....@!

One thing that I do know. This may not be a cure. But nevertheless,
it is a miracle. No one will ever convince me otherwise.