Today

Today I was supposed to have had my post Baclofen pump surgery follow-up. But I didn't have the surgery, so there's no need for the follow-up and I am very happy about that. I became more and more skeptical of the surgery once I found out that Baclofen is really for pain management and I would have to have the pump refilled every 3-6 months (depending on the size of the pump that I had inserted.) That would mean trips back to Vanderbilt that often. I'm very happy that it turned out it wouldn't have worked any way. I really have no pain whatsoever, unless of course, I fall or run into things. :) So, I bailed on Kristen who did have a follow-up with her surgeon and doctors three months out from her surgery. Kristen and I have really bonded over rare disorders and road trips. OK, so we've only been on one road trip together, but it's one I'll never forget - that's for sure!!!

Now, I'm waiting on insurance approval for DBS (deep brain stimulation). Please pray that EVERY step and procedure would be covered. There are actually 3 surgeries involved with DBS. Yes, I know. I HATE that part of it, but by golly if it allows me to walk assistance free, I'll do it! I've heard from the doctors that some insurance companies only cover part of the procedures and it can take up to 90 days or more to get approved by them. I'm hoping and praying that mine will be a lot shorter. I know lots of people are praying for me - so let God's light shine down and may my insurance approval come swift and may it be a FULL approval.

As for the actual deep brain stimulation surgery - I'm terrified, excited and hopeful all in one. Like I mentioned above, there are 3 components/surgeries involved. The below is a description I copied straight from the NIH web-site: National Institutes of Health

The DBS system consists of three parts:
•A thin, insulated wire called a lead, or electrode that is placed into the brain
•The neurostimulator, which puts out the electric current. The stimulator is similar to a heart pacemaker. It is usually placed under the skin near the collarbone, but may be placed elsewhere in the body
•Another thin, insulated wire called an extension that connects the lead to the neurostimulator.

Surgery is done to place each part of the neurostimulator system. In adults, surgery takes place in two stages (two separate surgeries).

Stage 1 is usually done under local anesthesia, meaning you are awake, but pain-free. (In children, general anesthesia is given.)
•Your head is placed in a special frame using screws to keep it still during the procedure. Numbing medicine is applied where the screws contact the scalp. Sometimes, the procedure is done in the MRI machine and a frame is not used around your head.
•Numbing medicine is applied to your scalp at the site where the surgeon drills a small opening in the skull and places the lead into a specific area of the brain.
•If both sides of your brain are being treated, the surgeon makes an opening on each side of the skull, and two leads are inserted.
•Electrical impulses may need to be sent through the lead to make sure it is connected to the area of the brain responsible for your symptoms.

Stage 2 is done under general anesthesia, meaning you are asleep and pain-free. The timing of this stage of surgery depends on where in the brain the stimulator will be placed.
•The surgeon makes a small opening (incision), usually just below the collarbone and implants the neurostimulator. (Sometimes it is placed under the skin in the lower chest or belly area.)
•The extension wire is tunneled under the skin of the head, neck, and shoulder and connected to the neurostimulator.
•The incision is closed. The device and wires cannot be seen outside the body.

Once connected, electrical pulses travel from the neurostimulator, along the extension wire, to the lead, and into the brain. These tiny pulses interfere with and block the electrical signals that cause symptoms of certain diseases.

As you can see, the above information says that it's only two surgeries, but I've been told Vanderbilt would do three. This may change of course, but as it stands right now, there would be 1 surgery to place the head frame and wires, 1 surgery to place the neurostimulator, 1 surgery to connect all the wires and turn everything on. I, of course, may be mistaken, as I'm not a neurosurgeon, but this is what I believe to be true at this moment. :)

It's a lot to take in and absorb, but I'm trusting the Lord that everything will work for His glory and in His timing. I'm excited to think what this may bring, but I'm also realistic. I know it won't cure my dystonia, but to be able to walk assistance free - I would count it as a miracle from God. There wouldn't be a day that went by that I would not tell someone of the miracle that took place. But, even if this does not lead to the miracle of me walking assistance free, I'll still count it as a blessing. God's consistently and constantly showing me His grace, His mercy and His miracles.