don’t wait too long to investigate DBS

[Gallowglass]

I just want to share my thoughts about DBS. I’m going to be in absolute agony for 2 more weeks. My DBS equipment is implanted, but it can not be turned on for two weeks. My symptoms are now so painful and debilitating. It’s not funny. Awful painful constant dystonia! I started the process nine months ago. Got the testing. It took months and I did not push things because I was unsure so it took three months . Then I got a green light and made an appointment with the surgeon, but the appointment was delayed twice due to my home flooding twice in a row in 2 hurricanes. I am now homeless .

The surgeon worked me in as soon as he could. And that for took 4 more months Each step took a long time and each step of the way my symptoms got much worse. I can no longer walk without a walker. I’m in constant pain due to dystonia and I have kinds of other weird symptoms. CL still helps a little but it’s almost down to no good effect. None of the add on drugs helped me .

I fully expect to feel much better once they turn this thing on and my doctor told me that it should work well for at least 10 years if not more I’ll be able to travel and leave a normal life with any luck at all I deeply regret, dragging my feet at the beginning And urge everyone to look at the early rather than late. Will update this later!

[Erniediaz1018]

i’m sorry you’re going through this. Thanks for the update. Keep us posted.

[Gallowglass in reply to Erniediaz1018]

Thanks! I do believe that trials are gifts intended to make us stronger and all suffering can be offered .in reparation for sin and for the good of souls. But I sometimes fail to suffer as well as I’d like!

[TracyLaine in reply to Gallowglass]

Amen! Praying for you and looking forward to your update after everything is switched on!

[Pixelpixie in reply to Gallowglass]

Respectfully, that’s hogwash.

[Gallowglass in reply to Pixelpixie]

Why do you say that?

[Pixelpixie in reply to Gallowglass]

Sorry, reply intended for TracyLainie

[Gallowglass]

I plan to report on. Z2/28 or 2/29. All prayers gratefully accepted .

[Juliegrace in reply to Gallowglass]

The programming can take time to work, so I would temper your expectations. Mine helped almost immediately, but then there were some setbacks which were very frustrating. I am four months post surgery and three months since programming began and I am very happy with the results. I, too, wish I would have done this two years ago and saved myself a lot of unnecessary suffering.

[Sherry1960]

Hang in there, Gallowglass! Julie grace is right. Programming will take awhile to find your sweet spot! I am 2 1/2 years post DBS surgery. I had painful dystonia in my feet. I have not had feet cramping since! All glory to God! DBS won’t heal us. This insidious disease keeps progressing. But DBS certainly helps some of the symptoms..

[00Mark]

Good luck! Can't change the past but you seem to have a good attitude to your vicissitudes. 🙏

[DogsWoode]

Thank you for your story. Good luck as you continue your journey. You've entered the tunnel now.....beautiful light ahead. We await your next update.

[PalmSprings]

All best wishes and hoping for a great result!