Recently because of dizzy spells and blackouts I have to use a Rollator Walker. I mostly use it when I go shopping, Church, and when I go for a walk. I love the fact that it has a seat, I can sit down on the seat and rest, that is why I asked for it. Because of my lightheadedness and dizzy spells I can't walk for far distances. Like I have said Leukodistrophy has started to take it's toll on my body. I have seen others with my disease in wheelchairs but that is something I want to aviod. I still want to be able to walk as long as possible. Difficult things for me to deal with having a walker are getting in the refreshment line after Church. Also at my age of only 37 alot of people stare at me when I go to the store. As things start to progress even though I get the looks and stares I'm still greatful that I can still get around even if it is with my walker.
Recovering from my VNS procedure has been a lone and hard road. At first when the device was turned on it didn't bother me that much. The stimulation was at a minimum level that I could tolerate.
Unfortunately I was still having a lot of seizures. So when I went back to see the doctor recently, he had to up the dose of stimulation.
I have recently been suffering from dizziness, disorientation, feeling lightheaded, shortness of breath, hoarseness of voice, and more seizures. I'm not saying just yet that the VNS is not effective. I'm just saying that there is a long time to recover from the surgery, and all the adjustments from the device. I am very sure that everything will work out in the end. I am just writing this article so epileptics who want this procedure will know what to expect. So far there has been a lot of pain with the healing, and a lot of dizziness with the adjustments of the VNS device.
One thing I know from being an epileptic for so many years is that visits to doctors and specialists can be very costly, ever after insurance. Just for a MRI is about $500.00 after medical insurance pays. With epilepsy it seems like a never ending cycle. My VNS alone is about a $50,000.00 procedure, my insurance pays all but 2,000.00 and that doesn't include the turning on of the device and the adjustment appointments witch I have about every two weeks until my VNS is adjusted correctly. Since my surgery I have racked up an estimated $4,000.00 in medical expenses. On top of that my medication that I have to take. It is very hard for me to make it on a fixed income as an epileptic.I myself have tried to start working from home but to no success. I have and online T-Shirt Shop my sales have been slim to none. My wife works but I want to contribute to my families finances and do my part. I would go back to my old job but the amount of seizures I'm still having won't allow me to. One other thing that is quite costly is my medical supplies such as my adult diapers due to my incontinence. So you see there are a lot of expenses when it comes to epilepsy.
I just had my VNS turned on yesterday, I will tell you it's no picnic.When the generator was turned on right away I felt a jolt of electricity go up my neck and into my brain. I would have to say that I'm glad that I was sitting down because it was intense enough to knock me down. Other things I have experienced have been shortness of breath, dizziness when standing, feeling lightheaded, and sore throat. When I use the magnet the intensity is about double or triple of normal stimulation. When I went to sleep last night I woke up with a choking sensation in my throat. After waking up this morning I still felt very tired. Today I have already had two seizures, so I'm thinking that when I see the doctor in two weeks that he may have to raise the dose of electric stimulation.
I have also decided to put the helmet back on because of the breakthrough seizures that are happening. One day hope to permanently rid myself of the helmet, but now I feel it's the right thing to do right now for my personal safety.
I would like to say to those considering having a VNS implant that not everybody has bad experiences. I know some other people who I have met, that have had great results with the implant. These are just my personal experiences, and I'm only two days into this. I'm very sure that things could get better as I go along with this process. I'm just sharing this for those who may be considering getting this procedure. So you may have some things to think about before making a decision on if you would like to have VNS Therapy.
Difficult things for me to deal with having a walker are getting in the refreshment line after Church. Also at my age of only 37 alot of people stare at me when I go to the store.
