Tuesday, December 29, 2015

Catching Up and Looking Forward

While it’s still December, I decided to update this blog one more time for 2015. :) I hope everyone had a wonderful Christmas. I know I did!

On December 23 I met with my neurologist here in Knoxville. It was only my second time meeting with him, but I was reassured that God (again!) led me to the perfect neurologist for me. Thank you, Jesus! I caught Dr. L. up on the happenings that have been going on in the past six months since I last saw him. He, of course, has been kept up-to-date by the doctors at Vanderbilt as well. I told him that I am equally ecstatic and terrified about the prospect of DBS. He said that’s to be expected. He told me that he’s had one previous dystonia patient that he referred to Vanderbilt for DBS and she has had a wonderful outcome. She, like me, had it affect one side of her body and mostly in her leg. This was of huge encouragement to me! Also of encouragement to me, was the fact that he gave my neurosurgeon a glowing review and high praise. But, he also reminded me that in dystonia patients the results of DBS aren’t immediate as in patients with Parkinson’s. Another reminder he gave: the device won’t even be turned on until about 6 weeks after the surgery. To this, he saw my impatient side. ;) Why can’t everything be done fast and instantly?!! But I told him, I’ve been waiting 10 years, I guess 6 weeks wouldn’t be that bad - but that’s still to be determined! ;)

Then, on Christmas Eve, I got an early Christmas present of sorts. My Vanderbilt appointment reminder and a mini biography of my neurosurgeon came in the mail. The letter literally began, “Congratulations…” I’m finding myself teetering between being excited and trying not to get my hopes up too high. I’ve been here before – thinking that a surgery would allow me to walk without assistance – only to have it not work. So, I’m really trying to be realistic about things, but at the same time I dream big.

However big I dream (and I do dream big!!), I must take one step at a time and January 7 is the next step. That’s when I meet with the neurosurgeon at Vanderbilt. According to the appointment reminder it’ll “involve a comprehensive overview of the DBS hardware and surgical procedure as well as a discussion about risks and post-operative expectations.” Please pray that everything goes well. I can still refuse the surgery at this point. I'm scared that I'll be scared enough by what he tells me that I will refuse it, but, as is becoming my motto in this process, I know that God's got this and nothing will happen that He hasn't already deemed to be.

I know I’ve been given a gift in being deemed a surgical candidate for DBS, but there is still anxiety about it. In my mind though, I can’t NOT do this. As I told Dr. L. I have to try it. If it doesn’t work, well, then, I’ll know I’ve done all that I can do. If I don’t do it, I’ll always have a lingering thought of “what if”. So, yes, I’m fearful, but I think my determination and hopefulness outweigh whatever fearfulness I have. Sometimes you have to do things you’re fearful of so that The Lord’s will is done and His works can be shown.

In case I don’t update again until January 7 or after, I hope everyone has a blessed New Year’s celebration. I, for one, can’t wait to see what 2016 brings!

Wednesday, December 16, 2015

Two Posts in Two Days

Your eyes are not deceiving you - this is a second post from me in as many days. This post is because I got a call from Vanderbilt today and I have an appointment set up for January 7 at 3:15pm with my neurosurgeon! If I had known yesterday that Vanderbilt would be calling me today, I would have held off on yesterday's post! Oh well - such is life!!

I also confirmed that there would be three procedures/surgeries involved. Two of them are outpatient and one is an overnight stay:

Stage 1 - MRI with bone markers (outpatient)

Stage 2 - awake implantation of DBS electrodes (inpatient)

Stage 3 - implantation of battery pack (outpatient)

I found all the reading material that had been sent to me in the very beginning and have been going over it again. I'm not sure yet if I'm scaring myself or just trying to be prepared for things. :)

Thank you for all the prayers!! Continued prayers for insurance approval of everything and complete success of the surgeries are very much appreciated. This is an adventure I never thought I'd be on, but in every step I'm reminded that God's got this!!

Tuesday, December 15, 2015


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.

Friday, December 4, 2015

An Answer

I got the call from my neurologist at Vanderbilt that I was expecting today. He said that the DBS Conference (I finally found out that that is the official name!) was held this morning and he brought my case up again to all in attendance. He presented the new findings and guess what?!!! I've been approved for deep brain stimulation surgery! Yay - a 1,000 times over!!!!

He again stated that my case is unique and they all agreed on that, but they also all agreed that if I was still game, DBS surgery would be the next step.

I've never been so happy or so scared about a surgery in my life, but I'm leaving it all in God's hands.

The next step is to get an appointment with the neurosurgeon. Vanderbilt is supposed to call me back on that. Today's call was only to inform me that I've been approved. :)

Now, more waiting and praying. Thank you all for traveling this road with me. There are still many steps to take before the actual deep brain stimulation and I'm trying not to get too excited (either in a good or bad way) about anything. It's not a done deal until it's a done deal!

However, today I'm celebrating a huge victory. I've said this before and I'll say it again: I don't know the future, but I know the ONE who holds my future. On this fact, I will rest!