I had my Doctors visit yesterday, and it was interesting as usual. My neurologist knows his stuff, but he is a little Qirky.I got some news I did not expect though. He is going to send me to a DBS specialist because he thinks that it will help with my type of Dystonia, even though he will admit he is not sure what kind we have.
This movement disorder specialist is supposed to be one of the best in the country he can install the DBS Device and program it. They say it is a new DBS system, but the only thing new about it is the placement of the leads, and they are not Positive it would work. Another Downfall is I would be in a Coma for about three weeks, or however long the Device took to start working, because they do not want me to wake up and have a storm, Which for me brings up another question? If he can program it why can't he stop the storm relatively quickly with the device.
I do not have to have the device put in, but with the medications I am on he has to prove that we are doing everything that we can.
So my next step is to wait for this doctor to call and first they will give me a Psych evaluation, for those who know me you have got to feel sorry for whomever gets that job, they may end up in a Psych ward themselves after they are done. After the Psych evaluation I will meet with the doctor and he will explain to me in detail how the procedure works and if I am I candidate for it. The one thing my Doctor did say is that in Dystonia patients the battery does not last as long so they would have to replace it quite often. My Doctor has one Dystonia patient that had the surgery and has had the battery replaced 7 times in a year and a half, which to me seems like a crazy amount of times for as little time as she has had it. He also told me that the battery can never Die or I will never get back to the point where I was before I got the DBS put in.
I am already familiar with letting a battery die they did that to my sister and she has been worse since that happened. I think, and she can correct me if I am wrong, she has a wireless charging battery now so they do not risk it dying again.
There are Pros and cons to having the surgery done. On the one hand maybe it will help and I can get back to Normal or on the other hand, as my doctor has said, they do not know what kind of Dystonia that we have. There are more components to what we have than most.
My Wife is against the surgery because she sees me everyday, and does not want to see me in a coma for any length of time, and I understand that, but she said she would not stop me from having it done if it was something that I wanted
So I have all the pamphlets that I am going to read before I go visit this new Doctor and we will go from there.
Please keep us in your thoughts and prayers as we carefully consider all of the options that we will be presented with. We both are trying to keep an open mind, but that is very difficult, and if I do decide to have it done My wife will need alot of prayers along with the rest of my family, because they have been through it before.
My family saw my sister go through it and I do not think they relish the thought of watching another family member do the same thing.
The surgery in general works for genetic dystonia, that is maybe what he meant. The success rate for it us much higher in those who don’t get it from a brain injury and who have it genetically. The reason for the cons is because they can’t turn you up to the stimulation you need all at once. It’s far too much for the brain, and it takes a dystonic brain a while to get help from the stimulation. I was on the same program for a month or two before that program allowed me to walk. Totally honest here- my heart sank when I read that this morning, but one big reason I had the surgery was to see if it was a possibility for our family. Secondly, going forward, if you continue with the seizures, the only option of stopping them will be a coma anyway. My doc has seen it happen. Then after putting the patient in a coma,they did DBS. The psych evaluation is important...sometimes those with depression or anxiety aren’t candidates so here be honest with your doc and see if he thinks those area results of the dystonia. If they are, then any improvements will help it. If they aren’t,DBS has a side effect of depression. I went in with my eyes wide open. I knew that it may not help at all...I was willing to take that risk. My hubby wouldn’t help me come to an answer. I did a lot of praying, and a God worked everything out well. My seizures don’t stop without the DBS so even with the battery problem , I’m very thankful I had the surgery. It’s definitely a personal decision....Mom and daddy had to watch it all as well as my hubby. They probably should have kept me longer at the hospital, but I was glad to recover at home.Being in a coma for three weeks is a much smarter way to do it. Just remember to think long term...eventually the dystonia is so bad that the surgery isn’t an option. Do you want to stay at your current position? Do you want the chance to improve if given it? Do you want to just let the dystonia ride and see what happens? Weigh your options without emotions if you can....I will definitely be praying as you go through the steps...by the end of the steps I really felt like it wasn’t an optional surgery anymore. I do have a nine year rechargeable battery. My settings would drain a battery in six months or less. The surgeries were becoming more difficult, and I have to get it changed early. God will give you the answer...I believe that because He did for me. Love you.
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