Calling all young onset people...

Yep, you read it correctly. I visited my new neurologist (third visit) to switch from Mirapex and left with thoughts of brain surgery. Mind you, he's the director of the DBS program at our university hospital, but still...

I left feeling horrified and unbelieving that things could be so bad that he would suggest taking advantage of DBS now. I'm only officially 2 years in, though symptomatic and med free for 7 years prior. I don't know my Hahn & Yoehr whatever number they assign to our 'progression'(reality check, the right word is degeneration) - I am still unilateral with a dominant tremor, no freezing, or falling.

Why so early? True, I started levodopa therapy almost right away, as I cannot tolerate agonists at higher doses. I could never have maxed out on agonists for a few years before dipping into the PD Fort Knox Pharmacy. My meds when I'm on work phenomenally well and,so much so, that when I saw this new neuro, he was not even sure I had PD- I had to visit him again after a 12 hour drug washout.

The problem is of course inadequate delivery of Sinemet where we have on/offs, and no even, steady supply of what our bodies need most. I have to dose way more frequently than I would like (still at lowest dosage of 25/100) and have some mild dyskinesia; it was a rude awakening to realize that this was only drug that really worked for me and that in reality other things like Comtan give you an extra 30 minutes- not at all worth it. So now 2 years in, my life depends on eating little yellow pills every 2-3 hours; less than thrilled, but hey, we adapt. The drug works fine and Requip may buy me an hour- dyskinesia at minimum. So why DBS, why now?

Perhaps, the scariest thing is that my neuro is makes sense to me. I have a 10 month old who wears me out in the best possible way- I don't want to be wracked with dyskinesias in 2 more years or not be able to play ball with him in the yard. I want to be at every stupid, muddy, <soccer> practice there is, and not hiding a shaking hand or keeping my good one on a pill cutter in my pocket. I want to bake him cupcakes from scratch until we run out of icing and have stomach aches, not worry about that tingling in my fingers that signals a 'time out' for any activity. Hey, I'm already an older mama, that's what was in the cards for me, I do not need any help in the feeling old department. Financially, I must continue working. It's weird because I don't feel that disabled now but know that my professional life, in fact, near everything I can do, is tenuous at best- there is a very thin ply yarn silently, relentlessly unraveling as I type.

In other words, I could get near to my pre-PD 'life' back for 5-10 years and be much better in the years my son will most likely need me the most. I only hope that within that time we will have newer treatment options open to us. If not, I go back on Sinemet and hope for a second honeymoon.

These are some things I learned about DBS with some questions.

There is a trend among MDS to recommend surgery when symptoms are still relatively mild in belief that when DBS is removed, that we will essentially remain clinically stable. There are some studies that support this and of course the scads of clinical trials seeking to prove neuroprotection.

According to my neuro, DBS is only as effective as your best response to medication is, so for now I would be symptom free. As the drugs lose their ability to mask our symptoms, so does DBS. In other words, with DBS we have an optimal window for pursuing and gaining the best benefit. I was surprised to learn this and even more surprised that we are not told this early on.

Of course, I tell myself it's crazy to do all this now...it's brain surgery, risk of hemorrhage, infection, etc. but younger means we are at less risk for these things. I know there's always a trade off with our treatment and worry about what that might be.

Am I crazy to even contemplate this now? Geez, right now I'd sell my soul to Daniel Webster to not have to get up tomorrow and start my day with a pill. When I look at my son, it feels right for me. I didn't think I'd have this is an option, sort of saw it as a last resort.

From a patient advocacy side, is it right to 'push' DBS early on? Should we be concerned about this? It's not like everything is disabling right now, but the unknown relationship I have ahead of me with Sinemet scares me, and I am realizing that the stress of that unknown is really making things worse.

I would appreciate any strong opinions, DBS stories, any subtle guidance, warnings, little known side effects, happy shiny anecdotes, a crystal ball, and most definitely a shot of really good bourbon.

Laura

Hi Laura,
Personally I think the decision of when to have DBS is a personal one and only you can answer the "when" part.
Compliance on your part and a healthy positive attitude which you seem to have from looking at your posting is also (I think) desirable if not a necessity.
I had DBS 6 yrs ago and will be forever grateful for the normality it allowed which I'd up until then thought was gone for good.
One of the group members here Charlie founded a website called yahoodbs...whatever. Help me out here Charlie! You might get some help from them esp. if you're in U.S. which the majority of the members are.
Lee

Laura;
My first impulse is to recommend trying Sinemet CR or Stalevo to get a longer, more stable level of levodopa. This is only because I have been able to use a single regular 25/100 carbi-levo to get started in the morning and accompany that with 50/200 CR, giving me at least 7 hours of really good time. Before going off, I take another 50/200 CR, and in my case, accompany that with a 25/100 CR. This gives me another 6 or 7 good hours.

The impulse to suggest for you what works for me is strong, but probably inappropriate. Because you are the age of my children I have to admit some fatherly feelings toward you, and that could get in the way of my giving you truly objective advice. I am 72 years old, having been diagnosed 9 years ago and have been on carbi-levo from the start with consistently good results and apparently slow progression (OK, degeneration). Also, I am bradykinetic, posturally unstable, non-tremor dominant. Although I have no plans for seriously exploring DBS this year, I realize that waiting too long could put me in the position of no longer being a candidate.

Since my current neuro has moved, and he has referred me to the top MDS in town, I may be confronted with more seriously considering other treatment approaches when I see him.

Robert

try Stalevo as a constant release, you should be evening out the Ldopa rush as much as possible.

I know it is a personal thing to decide whether to have DBS but with the associated risks of brain surgery you have to be 110% sure. This form of communication is not ideal but you sure don't sound 110% sure to me.

Personally I would try every drug option, the fact that your Neuro hasn't even suggested CR drugs but has suggested major brain surgery staggers me. I wonder at peoples motivations sometimes and I would seek advice from another MDS.

No one will ever persuade me that DBS is anything other than a last resort.

Neil.

Hi,

Thank you for the kind replies all. I should clarify that I am on CR! However,
for some reason, my initial neurologist started me on the lowest dosage at 25/100. I questioned right away that it should be more given the need for more bioavailabillty in an extended release formula. Neither neurologist has redressed this, and I think it's because my symptoms are so well controlled at the low dose.

I suggested Comtan and was told unequivocally I would get an extra 30 minutes tops with it. In my mind, not worth adding yet another pill to the mix.

My system is very sensitive to any agonist. I do get a withdrawal effect when it wears off and unless I dose right when I get that 'message'. It impacted my ability to teach until I figured out that the only thing that alleviated the room-spinning was to take a dose of Mirapex. Because of this phenemenon, I am very reluctant to ramp up the dosage of an agonist. I've been on 2.75 mg and can't fathom going up to 4.5 - I'd be sleeping all day or fighting to stay on the road.

For whatever reasons, meds are very suboptimal. I can't think of another clinically viable approach to extending the benefit of levodopa. Well, short of a pump infusion and then even that is being 'sold' as an end stage, wheel me out in a coffin or urn, treatment.

I guess any of us faced with this choice early on would be reluctant, but the potential benefits are beginning to outweigh risks for me. Note: this all serves to prove how woeful our treatment options are in the first place.

The stress from waking up each day not knowing when my relationship with levodopa will start to decline and in turn make it near impossible to maintain my livelihood- I am essentially on my own- obviously makes things worse for me. I know that if I didn't have this added pressure, my meds might actually work longer.

There is a Parkinson's Center around 2 hours from me that takes a more holistic approach to management. I wonder if I could get some of the stress in my personal life under control if it may make a significant difference in meds? It is certainly worth a try as a last gap stop measure.

Laura

Laura,
I cannot hope to tell you what meds would be best, or which way to go, but I have two comments to make.

The first is about your CR - this formulation of sinemet does not suit everybody. I was on it for ages, and only realised when I came off it that I was actually quite undermedicated. For those it works for it works really well, but for some like me our bodies/brains do not absord it properly. So the change to ordinary sinemet makes a huge difference.

The second is about Comtan. I would disagree about only getting half an hour extra benefit from this. Perhaps others can confirm this. I go a lot longer, and over time have found that my off times, with the exception of going overnight unmedicated and the usual morning issues, are less off than before. The difference between before Comtan and how I am now is huge...

If it were me I would try more options before resorting to surgery, it can take time, even a few years, to find a good meds regime and from the sounds of it your symptoms are controlled quite well, just don't last long enough...

Good luck with whatever choices you make.

Lindy

if i were you i'd try to talk to as many dbs patients of that neuro that i could. and of course consider the affect on my kids i came out worse - that would be the 1st thing i'd consider and ponder if it might be better to wait until they are older.

Laura,
I don't have any first hand information about DBS but I do know a little about surgeries in general and about how many things can and do go wrong. If there are alternatives, I would try them first.

There may be nothing for you that is better than surgery, and I have met several people who have had DBS and even after years with PD they appear to be perfectly "normal". But doctors can be quick to suggest cutting when there remaln other avenues yet untried that can have good results with far fewer risks.

As with everything else knowlege is power. You will know when it is right for you.

Laura - get a second opinion! Certain surgeons who perform DBS have been pushing for younger patients for quite awhile now; it is not a new notion (and you can't discount some of their motivation being its high cost and value to their practice). But it is not accepted as the right way to go by many. I'd give some thought to going to the Cleveland Clinic, as one option, for an evaluation.

I'd also check out Jackie Christensen's book "Life With a Battery Operated Brain: a Patient's Guide to Deep Brain Surgery for Parkinson's disease"; you can get it at amazon http://www.amazon.com/Life-Battery-O...3839533&sr=8-1

Her blog is here: http://livingwithbob.typepad.com/ Jackie is a young mother with two boys.

Please don't enter into this without doing MUCHO research! Do not think that you do not have time - you do - a lot of time! So take it!

Laura,


As you can see, many patients who communicate with each other tend to use DBS as a last resort, but you need to do what is right for you. I do caution you to do it for your own reasons, not because a doctor talked you into it. They all do.[try]
I left an appt one time with my doctor sticking his two index fingers into his head and making a goofy face. But i still haven't gotten one.

paula