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coacht

other surgery with DBS

10 posts in this topic

Hello all,

 

Have any of you with DBS had other surgeries? My wife broke her ankle and is having surgery. Of course she is 400 miles away and with this snowstorm there is no way I can be there. What has been your experience?

 

Coach T

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coach t,  i had a lot of surgeries before the dbs, not after. is your concern about the care she would get as a parkinsons patient?  I have had to go to the emergency room several times since surgery. If she is able to go to the hospital that did the dbs they would know how to care for her. However, she  might want to bring meds with her and a written schedule for the docs and nurses. also, there is a list of meds that they should avoid giving her that you can get from the NPF. I always told everyone immediately upon going to the ER that I was a DBS patient. Have a medtronic (or whatever stimulator device company she has) card with the phone for the docs in case they have any questions. and also if she is not supposed to have certain tests like mri make sure that it is all written down . I hope this info helps. I am sorry that you cant be with her. Is t here someone else that can be with her that you trust?

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Coach, I also had several surgeries before DBS, and none since, and I agree with everything that Siak also mentioned.......

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Thanks,

I talked to her and she had an epidural versus general anesthesia to cut down on side effects. It went well and she is to be discharged today.

Coach T

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I've had cataract surgery - no general anesthesia.  BUT, they did give sedation and, the doctor, when I told him about my DBS had absolutely no clue if it would be OK or not to use the equipment he was about to use.   I had asked the nurses beforehand and asked them to clear it with the doctor, they said they had.  When I got in there and asked the eye doctor directly--he had no idea.    I was prepared though!  I had all my doctors numbers with me and my Medtronics rep's number.  My husband dialed them all and handed the phone to the eye doctor--after a brief consult, he instructed me to switch off my DBS until after the procedure and all went well.  I was not about to go home that day without the cataract surgery being done!

 

Gotta go... Mum is awake!!

Kim

 

PS: Sorry if anyone has called and missed me--been run off my feet and had my phone switched off a lot to keep things down to a dull roar!

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Kim,

the anesthesiologist talked to Medtronics. I don't know what all they did, but things went well. She did have an epidural. I was afraid they would use electrocautery and fry her brain. She was discharged yesterday.

Coach T

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She must have taken one hell of a nasty fall..... I hope she's home this time......  am pulling for her... (and you as well)......

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Hello all,

 

I have been taking a bit of a break with everything that is going on. I never did follow up. She had to have another surgery to redo the first one two weeks after the first one since everything shifted. The surgery took longer than expected, the surgeon said he had a hard time lining things up. I said it was probably due to her dystonia since her DBS was turned off so the muscles contracted. She later had to have some of the screws removed since they had a high probability of breaking later. She was very weak after laying around for three months. She did improve and was a lot better by the end of June. She went to rock steady boxing for 10 weeks and did LSVT in August. We moved in August and even before the move her symptoms progressed. She had a fall, her dystonia was worse, cognition was worse. We moved in August and there were more stairs (for now), she would only use one leg to go up one step at a time and her (stronger) leg then became very stiff and remains so. Also, I don't know if it was the stress of moving or if it is just PD, but her cognition was a lot worse, now it has improved somewhat. One son read the article by the widow of Robin Williams and said it described his mother. Everything progressed faster than I had seen it in the past. A programming session helped a lot, but not for everything. Fatigue is worse for her now also. She needs to exercise every day, and stretch every day or more often, but she doesn't. It is a good thing the new house is handicapped accessible with a ramp and there is a bedroom downstairs next to a bathroom with a walk in shower. Sorry to be a downer, the DBS helped tremendously, without it I am sure she would be in a wheelchair by now with lots of side effects. The broken leg is what seemed to make things worse in that she lost so much ground being laid up.

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Hello all,

 

I have been taking a bit of a break with everything that is going on. I never did follow up. She had to have another surgery to redo the first one two weeks after the first one since everything shifted. The surgery took longer than expected, the surgeon said he had a hard time lining things up. I said it was probably due to her dystonia since her DBS was turned off so the muscles contracted. She later had to have some of the screws removed since they had a high probability of breaking later. She was very weak after laying around for three months. She did improve and was a lot better by the end of June. She went to rock steady boxing for 10 weeks and did LSVT in August. We moved in August and even before the move her symptoms progressed. She had a fall, her dystonia was worse, cognition was worse. We moved in August and there were more stairs (for now), she would only use one leg to go up one step at a time and her (stronger) leg then became very stiff and remains so. Also, I don't know if it was the stress of moving or if it is just PD, but her cognition was a lot worse, now it has improved somewhat. One son read the article by the widow of Robin Williams and said it described his mother. Everything progressed faster than I had seen it in the past. A programming session helped a lot, but not for everything. Fatigue is worse for her now also. She needs to exercise every day, and stretch every day or more often, but she doesn't. It is a good thing the new house is handicapped accessible with a ramp and there is a bedroom downstairs next to a bathroom with a walk in shower. Sorry to be a downer, the DBS helped tremendously, without it I am sure she would be in a wheelchair by now with lots of side effects. The broken leg is what seemed to make things worse in that she lost so much ground being laid up.

Sorry to hear it. Nothing made me weaker than 2 weeks of complete bedrest due to a spinal fluid leak.  I was young  and healthy enough to bounce back ok.  It took me a couple of months to get better, but I was in my 30s.  My 87 yr old neighbor broker her hip and is spending month's doing PT/recovery and slowly improving, yet her husband did something similar about 8 years ago, and he never got better and eventually worse.  They don't have PD either.  I think for some people it is really hard to bounce back by their nature and others just keep going and you don't know what keeps them going.  Like my 87 yr old neighbor. She eventually lost her husband and lives alone.  She was sure if she broke her hip, that would be it.  Yet, she keeps going.  Not sure how. 

 

I wish there were better answers for you, but glad she is getting some DBS benefit.

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