Back from the neuro...

[Teretxu]

As some of you know, I had an appointment at my neuros yesterday to discuss DBS surgery. There are three neuros and one neuro-psychiatrist on the team. Until last year they kept telling me that I could wait a little longer before undergoing surgery, because new and promising treatments were on the horizon. Yesterday, to my surprise, Dr. Salvador stated pointblank that there's nothing truly revolutionary about the new drugs and that they are very disappointed at how slow alternative treatments (i.e. growth hormone injections) are being taken up by the scientific community. It seems like every promising procedure towards finding a cure remains "in diapers", it will take another 5 to 10 years before there is any breakthrough.
So, he considers that not only should I get DBS surgery, but that at this time there is no other reasonable alternative to alleviate advanced PD other than surgery.
You heard it folks!
I have submitted my paperwork yesterday, will repeat all scanning and testing prior to surgery in due course (might take several months as public health systems are slow) and hope to become a bionic woman before year end.:cool:

[vlhperry]

Hate to see that pretty brunette hair laying on the floor of some beutician's floor. Good luck. The new way of listening to the brain while inserting the probes is phenomenal and makes accuracy very accurate. I am sure you must be excited.

Best of luck.

Love,
Vicky

[BEMM]

"You're a better man than I, Gunga Din!" I'm sure you are making the right decision, and I am sure, after reading all the accounts here of the vast improvement DBS makes, that you will be happy when it is done. Hair grows back! I have the greatest respect for your courage, and for the courage of everyone who has DBS.
More power to you. Your happy self is suffering too much these days. It will return.

Hugs from
birte

[paula_w]

Hi Teresa,

Welcome back! I've been holding back on DBS as you have but don't think I can last much longer. But the reality is, there is nothing else and never was [available]. There may be someday, but until then media hype abounds. We must remain hopeful and supportive and I wish you a very successful experience.

sincerely,
paula

[mamafigure]

Best wiehes to my quilt partner. I hope that this truly helps.
Mama

[stevem53]

Good news..Bad news..Good news that DBS continues to be a life saver for many, and I hope that is the case for you Teresa..Bad news..another 5-10 years for a breakthrough..Theyve been telling us that for too long, but unfortunately it seems to be the case

[GregD]

Teresa,
Only you and your team of doctors can make the correct decision for you. I hope everything goes well and wish you the best.

GregD

[DaleD]

Teresa,

I hope that your preparations go well as you contemplate/plan this important step. I wish I could assure you that everything will go as smoothly for you as it did for me. There are more and more DBS's being performed every day and the number of complications is dropping steadily.

Good luck and my prayers will be with you.

[DJM1]

Teresa, I'm sorry to hear you're having such a hard time. I haven't been on the forum much so I don't know what your symptoms are to cause you to be at the point of DBS. I did want to tell you that Stalevo didn't work for me at all. From the very first dose, it caused me some major problems. It's funny that I take the same meds that are in Stalevo (Comtan and Sinemet) with good results but the Stalevo really wasn't a positise experience for me.

Also, have you tried any study meds? I'm part of Kiowa Pharmaceutical's testing of a new drug, Istradefylline, aka the KW-6002 study. Istradefylline works on a system (adeno?) that no other med works on. It is an awesome drug, Teresa! So awesome that I went through medically unnecessary surgery last summer just so I could qualify to stay in the study. So, if it's available to you somehow, get it! It makes me a different person!

Wishing you all the best as you prepare yourself for the next step ....

Donna

Donna

[olsen]

Teresa, Congrats for making the decision--must be a relief for you. the only thing I remember from the old BT about post-op DBS was a recommendation from chasmo (charlie) to WASH your hands OFTEN....that does not sound so bad, right? my best wishes, madelyn

[chasmo]

yup, washing your hands with anti-bacterial soap, changing your bed linen nightly, keeping pets off your bed, etc are common sense things to do. IF you keep your hands clean and resist the urge to pick or scratch your incisions, you will not get an infection. (almost guaranteed!)

Charlie

[jeanb]

Teresa,

Good luck to you - I think as time passes, many of us will make the same decision to undergo dbs surgery. I'm glad it is available to us!

Let us know how everything goes. Best wishes & thinking of you. :hug:

[EmptyNest68]

Good luck Teresa! Thanks for keeping us updated....
Steph

[Teretxu]

Thanks for the replies and the encouragement, guys! I won't have surgery until after September, but I'm happy I've made up my mind and I'm somehow looking at things differently already, taking everything more in stride maybe.

Hugs
Teresa