DBS surgery soon

[cmm1957]

Husband having DBS on Monday, scared but hoping for best. Anything to get him off of Mirapex and have some relief from his Parkinson's symptoms. After 25 years of marriage it has been the worse year and a half of our married life with gambling compulsions out of control. It has destroyed our marriage and trust. I would say Mirapex was a miracle drug as far as controlling his symptoms, but it destroys lives. Hoping no more Mirapex after the surgery and maybe our lives can be a little bit more normal!

[Radioguy]

Husband having DBS on Monday, scared but hoping for best. Anything to get him off of Mirapex and have some relief from his Parkinson's symptoms. After 25 years of marriage it has been the worse year and a half of our married life with gambling compulsions out of control. It has destroyed our marriage and trust. I would say Mirapex was a miracle drug as far as controlling his symptoms, but it destroys lives. Hoping no more Mirapex after the surgery and maybe our lives can be a little bit more normal!

Best wishes to you and your hubby!

Just wondering, though, was Sinemet or Stalevo ever tried?

[Teretxu]

Hi cmm, I hope all goes well for your husband on Monday. Keep us posted. I wonder his doctor didn't take him off Mirapex, though, considering the wide range of other agonists on the market. I took it myself for a short time and all it did for me was make my legs, hands and stomach swell and change my behaviour. Nasty stuff for me!

[cmm1957]

He does take Sinemet and Azilect along with Mirapex. He was on a very high dose originally of Mirapex and doctor took him off when found out about compulsive gambling, tried Stalevo but couldn't sleep all night with dyskenisas. Tried just Sinemet, but didn't control his symptoms. He, therefore, went on a low dose of Mirapex because he could not move without it, but still has compulsive gambling. The neurosurgeon says its definitely the Mirapex, but I am beginning to wonder if it is just a symptom of the Parkinsons??? He was never ever a gambler in 25 years of marriage!

[stevem53]

Welcome to the board!

Compulsive behavior is a side effect of the Mirapex..There are a couple of folks in my support group who have had gambling/compulsive shopping issues, and when they got off the Mirapex the problems stopped

[one n dona]

requip causes same problems, good luck on the surgery, been there, doiing it, i know what your going through, but hang in there and remember its not his fault always remember he didn't choose this anymore than you did I know that doesn't help much but just to let you know your not alone in this

[DaleD]

Hi CMM,

I wish you the best for your husband’s upcoming DBS.

I had DBS in 2005 at age 59 after 20 years of pd . I have never regretted my decision.

Prior to the surgery I was taking Sinemet, Permax, Amanditine, Comtan 6-7 times a day. After the surgery I was able to drop the Permax and Amanditine completely and reduce the daily doses to 3. If I were not still working I think I could reduce the meds even further. My fingers get awfully stiff and it is difficult to use the computer or I would forgo the meds and endure the symptoms to lessen the affects that 22 plus years of Sinemet is going to create.

My prayer is that he will be able to rid the Mirapex from his meds with the surgery.

[cmm1957]

Hi CMM,

I wish you the best for your husband’s upcoming DBS.

I had DBS in 2005 at age 59 after 20 years of pd . I have never regretted my decision.

Prior to the surgery I was taking Sinemet, Permax, Amanditine, Comtan 6-7 times a day. After the surgery I was able to drop the Permax and Amanditine completely and reduce the daily doses to 3. If I were not still working I think I could reduce the meds even further. My fingers get awfully stiff and it is difficult to use the computer or I would forgo the meds and endure the symptoms to lessen the affects that 22 plus years of Sinemet is going to create.

My prayer is that he will be able to rid the Mirapex from his meds with the surgery.

May I ask where you had your surgery? Any speech problems afterwards?

[gaykir]

Hi CMM - I just had to respond because my husband (age 59) just had his DBS on Feb 7th. The reduction in drugs (especially Requip) has pretty much eliminated all his compulsive behaviors. His speech was initially effected but seems to be improving now that he is again using the Power Lung recommended by Vicky (I think) some time ago on the old BT.

The GOOD News :)

1. Dyskinesia is gone
2. Dystonia is much improved
3. “Off’s” are barley noticeable
4. Taking about 50% less drugs
5. No longer bound to the clock
6. Meals have less impact on function
7. Less obsessive behavior
8. More facial expression.

All this just 4 weeks post surgery. When he first had it done I thought we had made a huge error as he was pretty non functional. However, as he has healed the progress has been remarkable. No regrets here!!

Kevin had it done in Dallas Presyterian and participated in 3 weeks of rehab post surgery - a great DBS team and great program.

Best wishes on your husbands DBS. Rememeber - healing takes time!

Gayle

[DaleD]

Sorry I didn't respond yesterday. Had a seminar to go to and was wiped out last night.

I had my DBS in Seattle at Northwest Hospital. I have some speech problems but went through the Lee Silverman program with a speech therapist and that helped a lot.

I would trade the small speech and balance problems I now have for the less meds and little to no tremors.

Good luck.

[chasmo]

CMM1957;

I'd think that once your hubby is turned on, his MDS will stop Mirapex first. Talk this over with him. DBS is marvelously effective on movement disorders such as tremor and dyskinesia.

Dyskinesia is caused by excess dopamine, can you try a half a Stalevo??

There IS a protocol that will help your hubby. Keep after your MDS until you find it. I second Theresa's observation that there any alternatives to Mirapex, And yes his compulsive behavior should disappear once he quits Mirapex.
You deserve a medal for hanging tough!! I know it was not easy!!

Charlie Black 57, DX'ed with PD in 1990, bi-latera DBS-STN in 2002at UCLA

[cmm1957]

CMM1957;

I'd think that once your hubby is turned on, his MDS will stop Mirapex first. Talk this over with him. DBS is marvelously effective on movement disorders such as tremor and dyskinesia.

Dyskinesia is caused by excess dopamine, can you try a half a Stalevo??

There IS a protocol that will help your hubby. Keep after your MDS until you find it. I second Theresa's observation that there any alternatives to Mirapex, And yes his compulsive behavior should disappear once he quits Mirapex.
You deserve a medal for hanging tough!! I know it was not easy!!

Charlie Black 57, DX'ed with PD in 1990, bi-latera DBS-STN in 2002at UCLA


Thanks for the support. Its Sunday evening, really getting nervous about the whole thing. I don't even know if my husband knows how hard its been on me. He just thinks I'm a jerk because I was always checking upon him and never trusting him. His whole demeanor has changed, he's not the man he was. Hoping he will get back to his old self. 25 years of marriage is a long time, a lot of ups and downs but nothing ever like this. This was the true test! Say a prayer for us! Let you know how he made out soon.

[made it up]

All the best for a good outcome with the surgery.
If it helps cmm I could be (some would say still am:eek: ) a prize ***** pre DBS. But I truly think I'm a little bit nicer post op.
Not sure if it was something that is related to removal of anti parkinson meds but methinks so.
Good luck!
Lee

[Jim0918]

I tried Mirapex when it first came out. I was having sleep attacks at stop lights while driving, would get obsessive and be up all night cleaning, all kinds of obsessive behavior. All this stopped when I stopped taking the Mirapex. You couldn't pay me to go back on it. Best wishes for your situation.

[cmm1957]

husband had his surgery today. It didn't take quite as long as expected. He had the bilateral DBS. When I saw him in ICU he looked great. He had a great response with his rigidity, he can move his legs great while he was laying in bed. We will see what happens in the next month. The important thing is he got through it.

[BEMM]

Glad to hear that the surgery went well. Just sending you best wishes and adding my hopes you yours, that your husband recovers quickly, and that the DBS will be as helpful as you hoped - or even more. It must be a great relief to have it done and over with.

All the best.

birte

[Teretxu]

Great news! How relieved you must be! Say hello to your hubby for me, I wish him a speedy recovery.

Teresa

:Dancing-Chilli:

[cmm1957]

Great news! How relieved you must be! Say hello to your hubby for me, I wish him a speedy recovery.

Teresa

:Dancing-Chilli:

Good luck with your DBS. My husband is now 6 days post op from his DBS and is doing unbelievably well as far as symptoms from surgery. I never could imagine that someone could undergo brain surgery and walk out of the hospital (no wheelchair?) two days later. Of course, they put him back on his medicine until next week when he gets turned on. It will be interesting to see when he goes off medicine how he responds. We are about an hour and a half away from hospital in Pennsylvania, but well worth the trip to have a great doctor. Will keep you posted as to his progress.
Cindy

[one n dona]

so happy things are going well good luck hon and best of luck to both of you

[paula_w]

What an encouraging thread and thanks so much for sharing your experience cmm. Did you say where your husband had it done in Pennyslvania? I appreciate all of you telling us where you had yours done. Gaykir, Dale, and anyone else who did - thanks for chiming in. Dale I can see my stats possibly matching yours in terms of how old I might be and how long I've had it when I finally take the step.

Each time I read about the bravery this surgery takes [yes and i am not just flattering you all - it does take tremendous bravery], I move a little closer to accepting that I can do it someday.

God bless you all and thanks so much for sharing!
Paula

[DaleD]

I never could imagine that someone could undergo brain surgery and walk out of the hospital (no wheelchair?) two days later.


Cindy,

I was amazed too how quickly I recovered. I got out of surgery at 11:00am and was dismissed at 3:00pm the following afternoon. At 8:00am the next morning (less than 2 days prior to going into the operating room) my son and I drove down to the Civic Center in Seattle. We walked around the World's Fair site for a couple of hours, took the monorail to downtown and walked around the shopping areas until I became too tired to continue. I don't want to infer that this would be what everyone would experience as we are all different and the affects of the surgery would be different for each of us.


Each time I read about the bravery this surgery takes [yes and i am not just flattering you all - it does take tremendous bravery], I move a little closer to accepting that I can do it someday.

Paula,

I don't think it took bravery to have the surgery. I think you come to a point that you have to accept that you are are becoming a handicapped person and every day for the rest of your life is going to be restricted greatly in what you can do. I refused to accept that and wanted to continue to work and be able to get around on my own. The only way I knew that the possiblity existed was through DBS. The decision turned to one of hope and excitement of what it would be like not to have to live with the affects of the disease that I was currently experiencing.

A poem I wrote and posted on BrainTalk some time ago explains it:

Aspirations Before DBS
Diagnosed at 39,
Still in my prime.

DBS at 59,
Is there still time?

Time for new love,
Sent from above?

Time to share joys,
And make lots of noise?

Time to be relearn,
The things I still yearn?

Time for rebirth,
To enjoy this earth?

Time in every day,
To stop and play?

Though life is short,
The news to report.

That DBS can give,
A new life to live.

Life After DBS
20 years living with aches and pain,
Now with DBS my life to reclaim!

20 years not knowing about tomorrow,
Now no need for excuses to borrow!

20 years shaking of a limb,
Now I can read as I sing a hymn!

20 years shuffling my feet,
Now I can run, oh so sweet!

20 years body was rigid,
Now thawed, no longer frigid!

20 years parsing out pills,
Now far fewer prescription refills!

20 years having little hope,
Now I have goals, no need to mope!

20 years being alone,
Now no fear that the kids are grown!

How many years without a cure in sight,
How many more for those with this plight?