almont1
1 post
Apr 03, 2007
11:05 AM
|
Just had DBS surgery one week ago on March 26, 2007. I am looking forward to getting my battery pack turned on in the next couple of weeks. Anyone who tells you its a piece of cake is lying. Still, I would do it again in a heartbeat. Had it done at University of Miami Medical Center. If anyone has questions about undergoing the procedure, I'd be happy to discuss my experience with them
|
jimmymac
4 posts
Apr 04, 2007
8:33 PM
|
Congratulations...I am nearing my 1 year anniversary of my DBS and I too would do it all over again. I on the other hand would still contend 'it was a piece of cake'. Not like a walk in the park, after all it is brain surgery. However, everyone involved was awesome and knock on wood I had absolutly no negative experiences. It may not go that well for everyone, but I have yet to meet anyone who regrets having it done. Good luck on the remainder of your journey, keep us posted James
|
yoginni
3 posts
Apr 07, 2007
6:06 PM
|
Hello you two! Your exchange comes at a good time for me. My husband who was diagnosed 4 years ago at 38 may be considering DBS sooner than we thought. He is rigidity dominant, but also has pretty severe truncal dystonia--the latter could improve considerably with DBS. Doc scared us initially with the information that it can take up to 3 months (maybe longer?) after surgury to get the electric pulses set right. Glad you both are so pleased with the result of the DBS. If I may ask, how long did it take for you James to get things fine tuned? Concerns about his job security/insurance and other things come to mind when thinking of an extended recovery period. I am fairly new to this list and interested in hearing insights from you two and others that could help us as we ponder this option a soonerthan we thought we had to! Appreciate any help.
Last Edited on 7-Apr-2007 6:08 PM
|
tower_oh
10 posts
Apr 07, 2007
7:58 PM
|
Hi,
I had my DBS done 9 months ago. It wasn't a cake walk, but it was somewhat easier than I expected. As for programming, it took about 2 1/2 - 3 months before I really felt better. Since then, I've been to see my programmer about every 2 months for a little "tweaking" just to keep me up to speed. During those first 3 months, my symptoms were about the same as before surgery, except for the first few days after a programming session. I remember getting so depressed, and went in for an emergency "tune-up". She decided to try one of the electrodes that she hadn't thought would work. What a difference! The next day was my best post-op day ever, and I've been good for the most part since then. I have no regrets about having the surgery done, and this from a woman who swore she would never consider it. Be sure to check out DBS websites; you'll get lots of good info and help from them. Medtronic's site is good, and there's one on Johns Hopkins Medical Center. Also booklets from Parkinsons Disease Foundation and National Parkinson Foundation are both excellent sources of info and both are free. Go to their websites to order. Good luck!
Carolyn
Last Edited on 7-Apr-2007 8:07 PM
|
yoginni
4 posts
Apr 08, 2007
9:00 AM
|
Dear Carolyn, Thanks for relating your experience--the depression issue is evidently a major concern and glad the adjustment helped solve it. Exciting to hear how much better you are doing. After having so many problems throughout the diagnosis (too 18 months to get any doc to diagnose my husband) and later problems (18 months for docs to take my husband's harmful side effects from the Mirapex seriously) and then dystonia (7 months to get proper meds), I want to now take advantage of this super online community so we don't just have the usual trial and error experiences any more. I wish I'd discovered this website much sooner. We'll go to the websites you suggested and remain eager to hear other DBS experiences/tips.
Last Edited on 8-Apr-2007 9:02 AM
|
almont1
3 posts
Apr 11, 2007
1:46 PM
|
I am super excited since I'm going to get "connected" the day after tomorrow! Its a good thing the weather in Florida has been stormy, that way when they hoist me up to the tower, the lightning will be sure to hit me and connect with the bolts in my neck.... (Oh wait, that was the Frankenstein monster....) Anyway, I can't wait to hear the Doc say "Its Alive!" and I look forward to moving at a normal pace without taking huge doses of medication. Right now, even though I'm not turned on, I've had a nice microlesion effect (an immediate reduction in symptoms after surgery). My scars are healing very well (even the jagged one on my forehead.) On a more serious note, my surgery was unilateral, since my left side has been most affected by PD- and without medication, I am experiencing severe dystonia on my right side. So sooner or later, I have to have the surgery done on my left brain. Hopefully, I'll only need a fraction of the meds I'm now taking to control my right side for a while. Meanwhile, will keep you all posted on my progress.
|
yoginni
5 posts
Apr 13, 2007
6:11 PM
|
Almont1, I want to thank you for making me laugh at a moment when I wasn't feeling very cheerful! I now know if my husband goes this route we'll have to buy the warped Mel Brooks Young Frankenstein DVD to watch beforehand! (One of the best exchanges: "So what was the name of the brain you stole?"
"Abby, Abby Normal." HA!) I would really appreciate hearing an update on how the "turned on" phase helps the dystonia on your right side. My husband's dystonia is not being managed well by drugs (needs more muscle relaxants and he must use more and more apokyn some weeks) and of course the more meds he takes the more side effects, which trigger more dystonia. Stinks to put it mildly. My thoughts are with you as you continue to navigate this new post DBS phase.
Last Edited on 13-Apr-2007 6:18 PM
|
almont1
7 posts
Apr 17, 2007
6:48 PM
|
Dear yoginni, A twisted sense of humor is absolutely essential in coping with this disease. I really did feel like the monster when they attached the metal halo to my head before the operation. I quoted Boris Karloff in THE BRIDE OF FRANKENSTIEN as I was being wheeled to the operating room:(in my best Karloff voice): "Hate (the) Living, Love Dead". I think it startled my neurologist...lol My favorite line from YOUNG FRANKENSTEIN is when Gene Hackman as the blind hermit yells out to the fleeing monster: "Wait! don't you wanna stay for expresso?" The more I'm researching this, I'm realizing it could take some time -up to 3 months to get the impulses just right. Meanwhile, I continue to learn patience. (And I stay for the expresso)
|
yoginni
7 posts
Apr 26, 2007
6:42 PM
|
Hello again Almont 1, Sorry didn't see your post sooner...work and home stuff (a 2-year old keeps one hopping!) have kept me pretty busy of late. Super that you were able to surprise/shock your surgeon with your humor! I agree with you that a sense of humor is important as is patience. Did you know that in Chinese the word for patience "ren" depicts a heart with a knife through it? Not as gruesome as it may seem, but maybe b/c I've hung out with Chinese so long I kind of get it. I think without my "ren" I couldn't have handled a lot of the challenges my husband's PD AND (most painfully) the medical system's damaging mistakes. I know that my husband is the one who suffers most and I try to tell him how I admire his bravery, but it is tough on me too. To get back to DBS, the 3-month adjustment time is what has my husband and me the most worried. So if I could ask you and any of the others, does one have to take off or cut back on work for those three months or until one is stabilized? Are you working or back to your normal activity level. I will appreciate updates from you to see how you are doing with your symptoms and if your wacky humor remains intact! cheers
yoginni
|
BobbyB
1 post
Oct 25, 2007
1:50 PM
|
I just had DBS for trunkal distonia last month. Has anyone on this site had this done? Or could someone direct me to a chat room on the subject?
|
edatbv
1 post
Oct 27, 2007
12:57 PM
|
I was scheduled for DBS in October, but due to Medtronics recall, I'm anxiously waiting! My docter is Dr. Paul Francel in Okla City ( wwww.dfrancel.net), who just happens to be an othopedic surgeon also. While waiting on the Movement Disorder Specialist and Psyc Examinaton reports, he went ahead and inserted two artificil discs in my lowerr back. I havn't been back free from pain in 6 years until now. I went home 2 days after surgery, end can't wait for the DBS. He does the procedure while you are asleep,(about 2 hours), as appposed to the conventional method. and has performed over 500 of these procedures. I hope to have good reports for you soon. edatbv
|
boots1261
1 post
Oct 29, 2007
10:28 AM
|
Hello out there. I am new to this site but not so new to this condiiton we call Parkinsons. I am 52 and have been diagnosed 11 years ago. I am starting to consider the dbs procedure a little more seriously. My quest ion is what effect does it have on some of the secondary parkinson symptoms. I know it seems to be quite effective for the cardinal signs: rigidity, tremor etc. but what about the odder symptoms--constipation,insomnia, fatigue, oily skin, clognition, uncontrolled sweating, etc. etc. LOve to hear your first hand experiences.
|
sharon62
1 post
Jan 01, 2008
7:08 PM
|
My husband is 69 and has had Parkinsons for 14 years. He has been offered the DBS surgery at the KU Med Center in KS with Dr. Nazarro. He is on very little medication - only taking meds 3 x a day but the doc is hesitant about upping the meds due to a bout two years ago when medications were changed and he experienced hallucinations. After consulting with Dr. Pajwa at the med center and adding Sinemet to his meds, the hallucinations ceased. The improvement is said to be in the 20-30 percent range. What experiences should he expect following the surgery?
|
Lisa
1 post
Jan 02, 2008
3:14 PM
|
My Husband had DBS 2 years ago for dystonia. He is doing remarkably well with little to no tremor activity. He is now suffering from severe headaches that are not cured by any manipulation of the device. We have tried everything. Has anyone had this issue and were you able to resolve it? Any suggestions would be so helpful.
|
Peace<3
1 post
Feb 24, 2009
6:18 PM
|
my dad has parkinsons since he was 32 (i was 8 my sister was 4 and my brother was not even a year old)so he has had parkinsons for a total of 8 years now. his worst symptom would be diskonesia in his right knee which causes alot of pain...some of his other symtoms include the usual hand tremors, diskonsesia of the arms and legs, shufle walking, and the 2 most recent symtoms: 'head-bobbing' and speech slur..anywayss, my dad just got DBS 4 days ago. he said that all he remebers about the surgery was the doctors putting the crown thing on and adjusting it and them remebers 'waking up' (he was never asleep, he just didnt remeber anything in between..) and hearing the surgons say they need to 'sew that up'... so overall it was really easy for him and he mentioned that it was way easier than what people say and the youtube videos say. and my dad was lucky enough to have his pacer thing turned on low. but even though its on low setting, he is already able to see imporvment such as being able to smell again (tangerines are his favorite lol..), and as he found out today he is able to drive really well with his right foot (he is a rightie but was forced over the years to be a leftie due to tremors on his right side) and his knees dont hurt at all, he is able to sit still in his seat, he still has some problems with speech and head bobbing but that may go away when his pacer thing is adjusted soon. the down side is that he is having "throbbing head aches" and his neck hurts due to the wire that was 'shoved" up his neck to his brain. and he is really iritable, like just a minute ago he said i was typing too loud... lol..so ya..so far so good. hope i helped somebody..i would be happy to give more details or something if anybody wants info, i can also ask my dad anything about the surgery or recovery..just ask :)
Last Edited on 24-Feb-2009 6:28 PM
|
Peace<3
2 posts
Feb 24, 2009
6:25 PM
|
almont1:
my dad is the exact same way. he always has a sense of humor with his parkinsons. like whenever he chokes on something he will get the heimlich maunever and will joke afterwards that he needs Mrs. Doubtfire next time (for anybody who hasnt seen mrs doubfire..ur missing out..great movie lol) and he always says, "u wonder how i stay thin? parkinsons. it keeps me moving" ...a sense of humor will get u thru anything :) and my facebook quote: "a day without laughing is a day wasted" :)
|
kgs914
4 posts
Feb 25, 2009
1:44 PM
|
Hi, I've been living with Parkinson's for 10 years, migraines a bit longer. If you haven't already tried it, I would suggest Maxalt. It has never failed me in terms of relieving migraine headache pain. Good luck !!
----------Ken
|
almont1
11 posts
Mar 02, 2009
9:26 AM
|
It has now been 2 years since I had my DBS and I can honestly say that I dropped the ball when I accepted the fact that it did not help me at all. I accepted the fact that my neurologist spent no more than 5 minutes on adjusting the frequencies and that only once did I derive any benfit from these 5 minute sessions. The side effects of having the implant turned on were so bad that I have had the thing turned off for most of the time. Finally, at the urging of my aunt, I went to the Neurology Dept at University of Florida. The difference in care was astounding. First of all they videotaped me off- meds/off dbs, off meds/on dbs, on meds etc. They actually listened to what I had to say. Instead of having a busyand expensive neurologist do the adjustments in 5 minutes, they have a wonderfull nurse practitioner who spent 2 hours checking all the settings on my device on meds/offmeds.It was the first time anyone had checked to see if there was a setting that helped (there wasn't).
Diagnosis: lead implanted in brain is slightly off the optimal position-
treatment:surgery to reposition lead resulting in a real reduction in symptoms and side effect of meds. So in 2 days of tests Univ of Fla confirmed what I had supected all along for almost 2 years . There WAS something wrong with my implant. I have no one to blame but myself for waiting this long to get a second opinion. I have learned that its up to meto be pro-active in thetreatmentof my disease- andif any Dr tells u after a 5 minute consultation that everything is as it should be, when u know its not; FIND ANOTHER DOCTOR.DON'T TAKE NO FOR AN ANSWER. And make surethat wherever u have ur DBS has a comprehensive, multi-dsciplinary follow-up team.
|
Warren
9 posts
Mar 02, 2009
1:24 PM
|
How long were you out of work after DBS surgery? I am having it done the end of this month and I am trying to get a realistic date to be able to return to work.
|
almont1
12 posts
Mar 03, 2009
2:53 PM
|
I think it depends on whether ur having bi-lateral or unilateral leads implanted. The only really invasive part of the surgery is the pacemaker in your chest. I only spent one night in the hospital and was given home rest for a week.
I can't stress enough that the real work starts when the device is turned on. Be absolutely sure that they have a comprehensive team that will try everything to get u on the right frequency. Good luck! here' a link tht might help: http://health.groups.yahoo.com/group/DBSsurgery/
|
Warren
10 posts
Mar 04, 2009
5:31 AM
|
Thanks.
|
peg7777
1 post
Mar 11, 2009
12:21 AM
|
My mother has had parkensins well over 20yrs. I believe she is in stage two and getting worse. She has finally given thought to the DBS procedure. What will I have to face once mom has surgery? Watching her suffer with parkensins slowly taking over... How strong emotionally do I need to be?? Can some one please send me more info and experiences? Maybe some Doctors or clinic Names. Thank you!! peggie_rew@yahoo.com
|
Annita S
1 post
Jun 28, 2009
5:27 AM
|
I'm scheduled for dbs in august. Can anyone tell me how good UAB Birmingham is with their surgeries. I hope headaches are not common. I'm having hte side effects but I do pretty good, still play the organ at my church. will it effect this too. Thanks.
|
ShakyBanker
15 posts
Sep 06, 2009
9:09 PM
|
Annita S.- I am also a patient at UAB Birmingham and will be evaluated for DBS surgery 9/22. I would love to hear from you about your surgery and how you are doing. Anyone else post surgery that would be willing to post an update I would appreciate it as knowledge is power! Thanks...........Linda
|
,nannaclaus
3 posts
Sep 19, 2009
7:52 AM
|
nannaclaus I had DBS in April at UAB. It wasn't unpleasant at all. I HAD IT FOR LEFT SIDE ONLY
|
CatKnapp
2 posts
Nov 07, 2009
12:16 PM
|
I had dbs surgery September, 2008. I've had PD for 24 years and never before would consider having DBS surgery but the meds just weren't working for me anymore. The experience was a nightmare - both the surgery and the year of adjustments to my stimulator since the surgery. I've experienced NO improvement whatsoever. Not in my wildest dreams did I expect this outcome. I wonder if I'm the only with this experience?
|
mdavis5231
413 posts
Nov 07, 2009
1:36 PM
|
CatKnapp: I was dx'd 16 years ago and had DBS in '03. I am very sorry that your experience has been so profoundly negative. It really is a case of added injury to insult! From everything I know about the etiology of PD and the technology of DBS therapy, there should be SOME measure of relief for you. Not knowing where you are, who did your DBS, or what resources you may have, I can offer you this: YOU NEED BETTER PROGRAMMING!!! I derived very diappointing results too, until I was re-programmed by Dr. Rob Izor here in Houston. Dr. Izor has since set up a practice in Austin which offers specialized DBS programming. IMHO, Izor is a wizard and a genius and is worth the cost of seeing, no matter how high. After all, this is your quality of life at stake. Here is his info: http://www.neurologysolutions.com/
http://austin.bizjournals.com/austin/stories/2005/06/13/story6.html If you cannot see him, perhaps he can consult with your neuro. Please don't give up until you get the results you want!!! Best of luck. Mark
Last Edited on 7-Nov-2009 1:38 PM
|
pasban
35 posts
Nov 09, 2009
9:53 AM
|
Just had first lead placed at KU Med by Dr. Nazzaro.
Not piece of cake but less than I expected in the way of discomfort. Great doc. Will spend the time you need to know what you are getting into. Lead two and controller in mid-December. Looking forward to it and getting turned on.
|
