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waruna01 last won the day on April 16

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About waruna01

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  1. I am not making things up. What I said about most DBS patients will eventually need meds is from UF Florida Guide to Parkinson’s handbook. I think everyone should read this free book in full before considering DBS. If I said anything about DBS, I found those in a book or research article or they are based on personal observations from my dad who is currently still in the hospital after catching in infection during DBS battery replacement. He he now on 5th round of surgery for the same battery replacement. The infection is using the DBS hardware to grow and multiply. The infection is antibiotic resistant.The surgeon is desperately trying to save his brain leads by replacing, relocating the wire and battery for the 3rd time and it seems the every where it gets implanted, infection latches on to it and multiply. If it doesn’t heal this time, all his DBS hardware including the leads will have to be removed for a month to clear the infection. Infections need a foreign body to grow and multiply. DBS harware is an excellent resting place. Those of you who are considering DBS, please also factor in these hidden side effects of DBS. These are not disclosed to most patients prior to surgery. https://parkinson.org/sites/default/files/attachments/Deep-Brain-Stimulation-Guide-Parkinsons.pdf
  2. relax. You seem paranoid. Is your smell still good? Can you smell cofee? Banana ? Then forget about Parkinson and reading about it on the internet. If you still have these symptoms after few years, then go see a doctor. There is no benefit of an early parkinson diagnosis. I am pretty confident your symptoms are not Parkinson’s related. Parkinson symptoms takes years to manifest one by one not all at once
  3. Becareful about making recommendations about DBS if you had it within thr last couple of years. Full effects of this sugery take 7-10 years to manifest both good and bad. 9 out of 10 people need medications post dbs. There may be atypical parkinson patient who can eliminate medications for few years but rest assured they will be back on medications after 5-10 years. Wait and see...
  4. One of the major mistakes people make after DBS is reducing the medication. Your body needs levodopa to function properly and it carries a heavy weight than DBS. Some DBS centers don’t recommend reducing medications post DBS anymore. They keep levadopa dose unchanged. DBS only supplements medications. DBS cannot produce this to your body. When medications are reduced post DBS, over time it can lead to sucidal tendencies. It will take several years for this to manifest as most patients enjoy a honeymoon period right after DBS where they can substantially reduce medications due micro lesion effect. This slowly fades off over time and your body will begin to show the side effects of reducing medications. Your body needs levadopa more so than DBS. Most centers are reluctant to pass this information to patients as reduction medications is the most crucial marketing element of DBS. If your body still need the same medication dose post DBS, why have DBS in the first place? See the dilemma?
  5. I was wondering Azilect generic price has come down lately
  6. You are tying to solve two major problems at the same time. Either solve your DBS problem first or work on fixing your family issues first. You cant handle both at the same time. If you want to go for another round of brain surgery based on the opinion you got, go right ahead. Reason I recommended another opinion was sometimes sub-optimal lead placement can sometimes be correct through cleaver programming techniques. Reason I recommended UF is they specializes in sub optimal lead placement DBS cases. If they also recommend revision surgery, then you need it for sure. If you are going to open up your brain, its wise to spend couple thousand dollars for a second opinion. They may have financial assistance of some kind.
  7. This discussion is getting off topic but until you sort things out keep your DBS setting at minimal levels. Ask your prorammer to Reduce the frequency to 130 and pulse width to 60. This is the best setting for most DBS patients. Turn the voltage down on the side that that is not implanted correctly to the lowest tolerable level. This will reduce the DBS induced side effects. You really need a second opinion before the revision surgery from a DBS troubleshooting center to see if the revision sugery can be avoided. You don’t want another brain surgery if it can be avoided. We are here to help anyway we can.
  8. Get a second opinion from a reputed troubleshooting center. Sometime there is one electrode out of the 4 ( if its medtronic) that is actually within or very close to the the target STN or GPi that they can use to correct the issue. Not all 4 electrodes need to be within the target. This is why highly recommend UF Medical center. They specializes in DBS cases gone wrong. It was well worth it when I took my dad. They may have more resources if you need revision surgery.
  9. Get your DBS issues sorted out first. Go to UF Florida DBS Troubleshooting center. Their charges are reasonable even if you dont have insurance. It may cost you anywhere from 2000-3000 which isnt so bad. If they say you need revision surgery, you know the next step. Sometimes poor lead placement can be corrected from programming. There are special programming techniques for poor lead placement. When you have your health in order, worry about your family next. One thing at a time.
  10. Few lessons learned here: Be careful about expedient neurosurgeons that recommends this surgery too fast. There's many out there. They like to toy with your brain so they can gain the experience. If the neurosurgeon has performed many DBS surgeries within a short time, its a red flag. Dont jump into DBS bandwagon very young without trying meds for at least 7-10 years. If you can beat this decease with meds, exercise, and dieat alone, - kudos to you !!! Avoid this surgery when you have other financial and family problems in life as post DBS life will consume lot of time and energy to fix any side effects that may arise with DBS. Without a large family support group carry you through if problems arise post DBS. This surgery is highly complex. You are on your own if things go wrong. Medtronic, your neurosurgeon, or your programmer may not able to solve the problems if things dont workout well. YOPD Parkinson's progress very slowly. So dont rush into DBS when you are under 60. If you must get DBS, consider getting it on the side where you have most Parkinsons symptoms so you only need one lead. This can cut the post DBS risks in half.
  11. Codrin lungu might have some contacts at NIH that you can reach out to. https://www.ninds.nih.gov/node/14659
  12. If you have insurance , they may pay for a revision surgery. You should do it at center that specializes in revision surgeries. Swedish Medical center had one but Sierra Farris who did the programming is no longer there. Only other place I know is UF Medical Center Dr Okun’s group. It may cost couple thousand dollars but I think it’s worth a trip there to get this fixed. There are various programming strategies for suboptimal lead placement.Pam is very good at this. Sierra Farris was great when she had her office is Denver but it’s now closed. It’s premature to get DBS this early without at least being on meds for 10 years that’s when meds tend to lose its effectiveness and dyskenisa kicks in and this surgery may be worth while for some folks. YOPD Parkinson’s progress slowly and one should be able to stay with meds alone until mid to early 60s. You should now really consider a revision surgery at this point if an expert center like UF recommends. Now that you got DBS, only way out is to get fixed. They specializes in DBS cases that gone wrong. Your health comes first. Worry about family later. Many neurosurgeons and some folks who had DBS here are way too expedient about recommending DBS to others. Caution must used as this surgery is highly complex for someone to handle alone. This why I recommend that you need a big support group if you are considering this surgery in a previous post. Message me if you need any help.
  13. Go to UF Florida medical center. They have a great DBS troubleshooting center. Many neurosurgeons are too expedient in recommending this surgery. So be careful.
  14. You need troubleshooting if have unusual side effects. Normally people sleep lot more after DBS.
  15. There are special centers that does DBS troubleshooting like they do in UF Florida. Find a center near you or go to UF Florida
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