MUCH TO BE THANKFUL FOR THIS THANKSGIVING November 29th, 2013 - two weeks after home now and surgery was November 12(recovery from DBS surgery). I have been home since Friday, November 15 excluding a day trip back to Philly (Penn Med) on November 18th to remove stiches and get my first adjustment by Medtronic’s (Dr. Andres Deik. pennmedicine.org/wagform/MainPage.aspx?config=provider&P=PP&ID=13442). First, it’s worth giving an overview again of DBS (Deep Brain Stimulation) and the following article does a damn good job of this the-scientist/?articles.view/articleNo/38047/title/Tuning-the-Brain/ . DBS is now an approved therapy for both Parkinson’s and dystonia, but we have only just scratched the surface of its full potential. DBS should not be taken lightly as it’s not a cure and not for everyone. Age, mental health and cognitive health play a LARGE part in this decision. Strength as a person also plays a large part as well as a strong family support system. It is, after all, a family decision: one in which the entire family must support as the recovery process is long and all consuming. Would my 23 year old son steps up to the plate as he lives with me? Further, I hate losing my independence; can’t drive for 4 weeks and can’t bend over or lift more than 5 lbs. for 4 weeks. This is the part that I personally struggled with the most; do I want to put my family through this particularly as there were developments in the structure that would make this even more challenging. Plus, the recovery time can be 6 – 9 months, a huge commitment. THE BAD - So I’m back on my regular medication schedule (2 pills, 25-100 MG Carbidopa/Levodopa every 3 hours and Citalopram, 10 MG 3 times a day). Having gone off these meds during the so called honey moon period was very insightful and a real blessing. It really revealed why I’m so against meds. Problem is my honey moon period only lasted a few days, that’s the bad news. The good news is that means my brain is healing and a very fast rate. I was told that I would very well n\be on my regular med schedule within a month. WHAT TO EXPECT IN THE NEXT WEEKS: While the has lesion effect is in play (brain swelling) and the stimulator on, the patient is not as reliant and his Sinemet right now but not to be upset in about a week he will be on his previous Sinemet regiment. This is a good thing because this is the future and it means the brain swelling is going down. We call it the honeymoon effect because the swelling in the area with a little stimulation it is resolving his symptoms but when the swelling goes down the stimulation is no way near enough to suppress the tremors. If the patient takes his medications on his normal every three hours he would be way to diskinetic (thefreedictionary/Dyskinetic )so it is trying to find the right balance of meds. It is very common to be diskinetic when they are used to taking meds every two to three hours. Please remember this is your future, this is a good thing. When your stimulation is at the max where it needs to be for you your medication is going to be down, and that is the goal. Housekeeping: Remember you do have an implantable device now. It is just like a hip or knee, before you have any dental work you need to take a prophylactic because if the bacteria gets into the gums and gets stuck to the device that is bad. Before any dental procedures you need to call for antibiotics, like omoxycyline. Just call us and we can call it in for you. You cannot have the sonic cleaner in the dental office to get the tartar off your teeth because that sonic can interfere with your system. You cannot have an electric cleaning of teeth; you have to go back to the old fashioned scraping. No MRI below the neck, EVER, because it can burn out the batteries. Re the batteries, they are not as sensitive to magnets as they used to be but they are still recommending that when you fly you will get a card from Medtronics that you should show the security at the airport so as not to go through the scanner. Medtronics recommends that you only have the wand scanner. MRI: You cannot have any MRI, never, never, never because they will burn the stimulators right out of your chest. You can have cat scans though. The best thing is that you are your best advocate, if you have to go to the hospital for anything you will tell the staff that you have PD and that you have implants in your chest. EKG: You can have an EKG but you have to turn off the stimulators because there will be interference. SURGERY: If you ever need surgery you turn off the stimulators and then turn them back on after surgery. You will never know that it is off because you will be asleep during surgery. FOLLOW UP VISITS: When your battery starts to change in about three years you will probably go back to Philadelphia to have them changed. That is considered outpatient surgery. You come in the morning and you go home the same day. They use the same incision so the batteries won’t sag down. The lead behind the ears is an anchor point. HEALING PERIOD: For four weeks you need a chance to heal. You can take a shower, no driving, check the incisions for four weeks. If you do everything right and take it easy for four weeks you should be ok for a long time. SYMPTOMS OF OVERDOING Your brain does not give you a symptom that you are tired, like other parts of your body. For example if you are in front of the computer too long and you can’t concentrate or you are getting a headache that is your cue to stop and take a break. Your brain’s cues are a little different. If we see that you are not acting like yourself, don’t know where you are, sleeping all day, not taking a shower, just not yourself, those are things we need to call about. If you notice that you are having trouble getting your thoughts together, for example “why did I come to this room and what did I come to get” that is normal because they did go through the frontal lobes and you will get some adema (nlm.nih.gov/medlineplus/ency/article/003103.htm )but that will resolve itself. If you are used to doing the NY Times crossword puzzle in two hours it may take you all day. Think of things in that respect. Don’t plan on sitting in front of your computer for 8 hours or watching TV for 8 hours, or reading a book all day. You have to break is up. Your brain will give you subtle cues; your head is throbbing, your eyes are tearing, you have to take a break. That is your brains cue that you are overdoing it. EXERCISE: As far as exercise, the only exercise you are to do right now is walking. When you see Dr. Baltuch in four weeks he will give you the ok to do whatever exercise you normally do. PRECAUTIONS - PREVENT STAFF INFECTIONS Don’t bend down to tie your shows. Even after your incisions are well healed, even years from now, always get out of the shower and check to see that everything is well healed. If you see a scab, this is not good. Be aware of this for the rest of your life. The reason to be aware is that staph infections don’t just live in the hospitals anymore, they are throughout the world. A patient hit his head in the shower, got an infection in the stiches and got a staph infection. Staph infections like moist, wet spots. Always make sure that your stiches look healthy. If you see any red, moist scabs call us because if we can get on top of this thing before it gets on the stimulator it is great. Once it gets on your stimulator it sticks like glue and no matter how we treat it we have to take the stimulator out, treat it, and then put it back in. This lasts for six weeks. So we like to give you as much information so you don’t ever get to that point because it ain’t fun. LAST WORDS AND THE GOOD: Facial swelling is significantly down (see pictures). One must truly heed the doctor’s advice as this is brain surgery. I over did it about a week ago feeling rather good at the time due to the honeymoon period, or so I thought and I paid the price. Rest, staying positive and keeping the larger picture in front of you at ALL TIMES at all times is the most valuable lesson I can offer. You will have your down days and days of depression. But remember that each day is a small step in the right direction and before you know, you will be better off and wondering why you did not have DBS sooner. Keep the faith, fight the short term battle and surround yourself with great friends and supporters. I want to thank all those who have volunteered to bring me meals while my confinement and recovery period are in effect. By December 18th, I should get my freedom back and driving privilege restored. Thanks to all those who continue to support and aid me in this battle, I hope that by me chronicling my own journey it will inspire others to take the leap. Special thanks to my cousin Laura Marie who is a RN and took off from her job the first 4 days I was home to care for me.
Posted on: Fri, 29 Nov 2013 17:23:00 +0000
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