DBS Operation Update

These are the before and after photos of me getting a mohawk before my first surgery. Naomi has thought she might want to be a hairdresser someday, so I gave her an opportunity to cut my hair before it was buzzed off. When the girls started playing around with a mohawk, I told them to just leave it like that, since they would shave the middle in the OR anyway. The surgery personnel got a kick out of it, too. The girls who helped were Naomi, Anna, Irina, and Kathryn.

Sorry I have not posted an update regarding the surgeries and recovery. The second surgery went pretty much the same as the first, although I did insist on more anesthesia when they placed the frame on my head that time! They also thought they got a good electrode placement that time, and the test stimulation in the OR went well.

The third surgery was the placement of the battery packs and it was an outpatient procedure. Like I thought, it has been quite a bit more painful than the first two surgeries, though. Two new incisions were made on my head so they could get to the wires (and they shaved more of my newly grown fuzzy hair!) and it looks like they kind of poked holes down the sides of my head as they guided the wires down to the battery packs.

The batteries were placed in my chest, just below my collarbones. I ended up with a large bruise on one side for some unknown reason, and that side is also a bit more uncomfortable to date. The incision sites are sore and I also have a hard time turning my head due to the wires leading down to the batteries. I am hoping that is something that will resolve itself as time goes on.

I have an appointment next Tuesday, May 15, to have the stitches and staples removed. They will also turn the batteries on that day and begin the programming of the stimulators. It will take a while (possibly weeks to months) to reach the optimum settings, but I hope to at least have some indication of how well it will work that day.

Thank you all so much for your prayers and support. We have been overwhelmed with all of the help we received from our local church family. What a blessing they are to us!

And, in conclusion, I will share the wisdom we have gained from this experience:

It is not really a good idea to have a wedding and three surgeries within a time span of less than three weeks. (By God's grace we have managed quite well, but given the choice, we would have spread things out a bit more!).

Surgery Not As Expected, But Successful

Thank you all so much for your prayers for my DBS surgery. God was merciful in answering them!

Yesterday's DBS surgery did not go exactly as expected, but it would still be considered "successful." Any who know us will not be at all surprised by that, of course. ;-)

The stereotactic frame placement was more painful than I had expected and the drilling was quite a bit more intense than the "dentist's drill" it was said to resemble, but once we got past those two items, things began to move along.

It took a while to do the brain mapping, but they finally found what seemed to be a good spot. (It was very interesting listening to neurosurgeons talk among themselves...) They were quite excited to make such a good placement and when they turned on the electrical stimulation to try the electrode, the right side of my body actually stopped twitching and jerking! I was suddenly able to touch my finger to my thumb in rapid succession, rather than in a jerking fashion as I had done before! To say I was very happy would be a bit of an understatement.

However, sometime during the surgery I lost some spinal fluid. This can cause the brain to shift positions, although I am not clear on whether it actually did or not. Because of this loss of spinal fluid, they chose to stop the surgery at that point, in case the brain had shifted from where they had already measured and marked it to be.

I was pretty disappointed by this turn of events, but asked if they could do the battery placement at the same time as the second electrode placement. The neurosurgeon said he would consider that possibility, but when he came to see me in the NICU he said they had decided to do two more surgeries due to the increased possibility of infection with having the two surgeries at the same time.

So, the surgery was successful, although I will be having two more surgeries rather than just one. This has always been part of God's plan, though, and I submit my will to His. I had a number of opportunities to share information about our family and why we chose to make room for all of these kids, so perhaps God is not finished with that, yet.

Words of Wisdom

I recieved an email from a friend regarding the news of my upcoming surgery. Her response was the most wonderful one I have gotten yet and I would like to share it with everyone in the world:

"My dear sweet friend...what NEWS! Deep Brain Stimulation. Where do I sign up?

I need this! My brain is asleep and cannot comprehend the love of God for me...that He died, so I might live. That daily he gives Grace to live that day and get over all the days that were previous to this one. I cannot comprehend what it ment to send His Son here, and fiddle around with us, to get us on the right path. Maybe Deep Brain Stimulation would wake a sleeping sluggish soul..."

I simply cannot add to that. To God be the glory, great things He has done!

Committee's Decision

I finally heard from the surgery nurse today and she said the committee had indeed recommended me as a good candidate for the DBS surgery. I am still chuckling over the neuropsych testing, though. Today she said, "You could not have had any more flying colors on your neuropsych test." Imagine that. A "crazy" mother of 11 wowing the doctors on a neuropsych test! Sorry folks, but that is hilarious. I have spent so much time having doctors tell me I was just "stressed and depressed," and now that I finally get a neuropsych test done they are all shaking their heads over it in amazement. I think it was all of that "stressful" homeschooling that helped me ace their testing so well, actually. ;-)

I did ask some questions that were specific to UAB and this particular surgery, for us to consider over the weekend. The neurosurgeon who does this type of surgery has been doing it since 1997 and he currently does 3-4 unilateral surgeries per week, for Parkinson's and Essential Tremor. The Dystonia surgery is a bilateral one, however. They have actually only done four other dystonia patients, but have had good results in them all.

I had requested that the surgery be after Jennifer and Micah's wedding, so they were able to accomodate that...barely. If we choose to accept the date, they have it scheduled for April 18, which is four days after the wedding. We will think about this over the weekend and call them with our decision on Monday.

The risk of complications with this surgery is quite low - only about 1% - and the potential for improvement is around 50% - 75%, with some dystonia patients reporting up to a 90% improvement. Success is not guaranteed and perhaps the greatest risk is having the surgery and it not changing things at all, though.

Thankfully, my hope remains in the Lord and not the doctors. I trust Him for guidance and wisdom as we continue to pray over this decision. At this point it looks like we will decide to go forward with the surgery. Please pray with us that God will be glorified throughout the entire process, if we do make this decision in favor of the surgery.

Surgery Evaluations

Yesterday Bob and I traveled to Birmingham for the evaluations required in connection with the Deep Brain Stimulation surgery. It was a very long day and tiring day, so we were happy to come home and be treated to a supper of pizza (supplied by Charlotte Campbell, who stayed with the kids during the day) and sushi (made by Jennifer). OK, so maybe we have eclectic meals at times. Keeps things interesting! ;-)

The neuropsych testing was scheduled to last 4-5 hours, but we were finished after about three hours. I was beginning to think they were not going to believe my answers on their questionnaires (mood type questions - I answered them all with a zero, indicating that I had no problems with that part of my life), but Bob backed me up in his interview. They also were quite impressed with my cognitive scores, apparently, which lent credence to my psychological answers. At one point the technician mumbled something along the lines of, "I have never had to go this far before," (in regards to the memory portion of the test). I am certifiably sane now!

My brain was pretty scrambled after the hours of testing, so we had a lunch break before heading for the brain MRI. I told the technicians that the MRI noises made my dystonia worse, but they didn't seem too concerned. I put in my own ear plugs and used their headphones on top of those, but the noises still caused very intense dystonic spasms. Although it was a relatively short MRI (15 minutes), I was in tears and unable to walk by the time it was finished. At one point during the test the technician came and asked me if I was having a seizure, but I told her it was the dystonia. I guess they understood what I was talking about then...

There was a woman in the waiting room who was waiting for her MRI when I went in to have mine done. Her eyes got pretty big when she saw the shape I was in after mine, though! I tried to assure her that it really wasn't THAT bad, but she looked a bit dubious as they led her back.

The DBS surgery nurse came to talk to us and she videotaped me while I was having the intense spasms. I apologized for being so "bad", but she seemed excited at all of the dystonic activity. She said that the worse I was, the more likely the committee would be to recommend the surgery.

Before she left, she let us know that the committee is meeting next week and she would call me and let me know their decision. She seemed certain that they will consider me a "good candidate" and then the final decision will be left up to me.

I have learned much about this surgery over the past couple of weeks, but have not come to a final decision regarding whether or not to go ahead with it if the committee considers me a good candidate or not. Prayers for wisdom would be greatly appreciated.

An "I" Examination

Not long ago my ophthalmologist examined my eyes and sent me home with a prescription for glasses. Now it seems that I may need an "I" examination, also.

Yesterday, the Movement Disorder Specialist that I go to in Birmingham told me he was going to recommend me for Deep Brain Stimulation surgery for my dystonia. This totally took me by surprise, although I knew it could be an option "down the road". I am the type of person who likes to have my days and weeks nicely planned and this was NOT in my schedule (it requires a long evaluation period plus lots of medical tests prior to surgery and much afer surgery care). I also like to do my own medical research and this was not one of the options I had researched and thought he might mention. Hmmm, maybe that is why he gets the big bucks rather than me?

What were my thoughts on the way home? Mostly along the lines of, "I don't want this surgery, I don't want to have to make these trips time after time after time, I am scared to have someone drill into my head, I don't want to have my head shaved, etc." Of course there were also thoughts like, "What if they don't consider me a good candidate for this surgery, what if insurance won't cover the costs, what if the surgery does not relieve the symptoms..." Are you getting the picture here? Way too many "I's" and "what if's", right? According to my wonderfully wise mother in law, I now need an "I" examination.

The doc pretty much blindsided me with his declaration, but he was not responsible for my reaction. I was. It was not a God honoring one, either. This is one reason that I went immediately to those folks who I know would be willing to pray for me, to ask them to pray for strength and wisdom. Of course I also prayed to my Lord and Savior, as I needed much of His wonderful grace at that time. I talked to my husband, who is always willing to help me see things from a biblical perspective, and then I had a good night's sleep.

God's mercies are indeed new every morning. So, did I wake up today ready and raring to go with the evaluation process?!! Uhhh, I am afraid not. This will certainly be a journey and I pray that God will teach me along the way, allowing me to grow closer to Him with each step.

So, as I begin this new journey, I pray that God will show me how He can be glorified through me or those around me. I have to admit that at first I drew a total blank on this topic. Then, as sleep began to heal my tired body and mind, I was able to part the clouds of doubt and frustration and begin to see some ways. Here are a few that have come to mind today. First of all, I need to share my journey with others, including the joys, trials, and lessons I learn along the way. If I allow others to see my weaknesses, then God can show them His strength. (II Corin. 12:9-10)

Secondly, if I do need to shave my head I will recognize that it is the inner person which God looks at and not outward adornment (I Peter 3:3). I have decided to not cut my hair until the surgery (if indeed it is done) and then allow the kids to help me shave my hair and send it to Locks of Love. This will not be easy, but by the grace of God I could do it.

Thirdly, I will be open to God's will. That is easy to say, but can be so very hard to put into practice. What if this treatment is not chosen or does not work and then I am left with the problems I have now, perhaps multiplied many times? Oops, that was a "what if", wasn't it? God doesn't need to hear those, as He has a plan. It is a matter of me submitting to His will, whether it is pleasant and fun or not. I can do all things through Christ, who strengthens me.

Lastly, I can assure you that I will falter, probably on a daily basis. I will confess those faults and go on, not allowing them to deter me from following Christ. I will remove the "I's" from my vocabulary by having "I" surgery along with brain surgery. Even if the brain surgery does not happen, the "I" surgery is still essential to my health and spiritual well being. By the grace of God...

Throwing Caution to the Wind

This morning when I got up, my spasms were much worse than they usually are in the mornings. Since I was obviously going to have to do something about it, Bob told me to go ahead and take the morning dose of my new medication, rather than waiting until tomorrow to start it.

I did, and the spasms stopped exactly twenty minutes later! It was just like a switch was flipped - they stopped almost that suddenly, and were real close to being completely gone. For the first time in over a year, I sat in Sunday School with my hands casually relaxed in my lap and my eyes focused on the speaker (Just imagine - that trip to Philly could have been avoided if I had tried this medication earlier...It sure was a fun trip, though). My head did not bob up and down, so I made sure to let the pastor know that didn't mean I suddenly stopped agreeing with him, though. ;-) It was simply amazing and a huge blessing to be in church the first morning I tried this medication in the morning (God's timing, of course).

The medication wore off at precisely 3 hours, 40 minutes after I took it, but those were some precious moments and now I know there IS a treatment.

Please pray that I will be able to handle the side effects of the medication (need to make sure that the chest pains I had were gastro related, for one thing...) and that this may help the doctors narrow down the specific type of dystonia I have. I will be taking this medication at least four times per day and I will always have "off" times, but this is sure a lot more relief than I have had in the past!

I am hereby no longer "cautiously optimistic". I throw caution to the wind and praise to the Lord!

Cautious Optimism

After a year and a half of increasing and continual muscle spasms, we may have found a medication that can help, and some answers along with it. As the title says, I am cautious about this optimism, because there are so many "if's" that go along with it.

One type of dystonia is Dopamine Responsive Dystonia (http://www.dystonia-foundation.org/defined/dopa.asp), and it is usually initially discovered with a trial of levodopa. I have had three doses of this medication so far and each time I took it the spasms stopped within only a few minutes. It was totally amazing! It is like a pain medication, though, in that it wears off in about four hours and you need another dosage.

My doctor is starting me out slowly, which is a smart thing. The dose I take right now is at bedtime, to give my body a chance to get used to it. Next week I will start a morning dose, and will need to clear my morning schedule, since it does seem to make me pretty "crazy" (woozy-like). I am hoping it is one of those side effects that wears off once your body becomes acclimated to the medication, since I will eventually be taking it four times a day.

I did have a point at which I wondered if I was allergic to the medication, too. I had all of the signs of an allergic reaction, except it did not get so bad that I couldn't breath, thankfully. I have liquid antihistamine handy now, in case it happens again.

The spasms return promptly once the medication wears off (usually a bit less than four hours) and today they are pretty bad. I think that is due to a lot of running around, though, and I hope to rest the remaining part of the day.

On another good note, Ollie had cataract surgery today and we were amazed at how easily it went! She is so eager to have good vision again and what a wonderful age it is we live in, when God has equipped doctors to be able to return a person's sight at the age of 81!

Medical Update

"My hope is built on nothing less than Jesus' blood and rightousness..."

Actually, I have to confess that I have not done a good job of maintaining a steadfastness in the statement above. It is a daily struggle to not place my hope in the next bottle of medicine or doctor's appointment. I don't like having Dystonia and being a "jerk" all of the time. Whatever novelty there might have been in going from doctor to doctor for a diagnosis has long worn off (well, there wasn't much of it to start with). I continue to be thankful to God for bringing me to a good doctor who knows what my movement disorder is, though.

Yesterday I had a three month recheck with this doctor in Birmingham. The medication he gave me three months ago does not seem to have affected the spasms much at all. The side effects are bothersome (dry mouth and throat, short term memory loss, nausea, blurred vision) so I was quite happy to be taken off of it. Of course it will be replaced with a different medication for me to start once I am fully off of the old one. The two medications have a very different mechanism in how they affect the brain so it could be possible for one to help but not the other.

The doctor made it clear that IF this new medication helps it will not totally alleviate the spasms. At some level I knew that, but hearing it was kind of like a slap in the face. I am beginning to realize that I have been putting too much hope in the medications and not enough in the Lord. My goal has been to find a treatment that will take the spasms away rather than finding out how God can use me throughout this illness. Unless He chooses to bring this illness to an end, it will be with me the rest of my life. The intensity of the symptoms will likely ebb and flow, but it will probably never go away completely.

There are other medical options besides drugs, namely Botox treatments and Deep Brain Stimulation (DBS). The Botox is specific for certain areas and would probably be limited to the spasms in my head and neck, if we chose to try that treatment. DBS is like having a pacemaker in the brain and is used specifically for those with Generalized Dystonia as compared to having Dystonia in only one area of the body. I am not in a hurry to consider that as an option, since it involves surgery.

For now, I will continue to work with the medications - coming off of the old one and starting the new one. The doctor also said something that kind of surprised me. He said, "Don't go to the ER if the spasms get worse." I asked him why and he said that because the spasms are made worse by stressful situations, going to the ER is one of the worst things you can do for them. I had pretty much come to the same conclusion on my own and I told him how I currently deal with flare ups (go into a dark and quiet room and lie down, taking a Valium if necessary). He commented that this was a good way to handle it - that I should "take a chill pill." Ha! I loved that comment since I very often tell this to the kids, so I asked him if I could consider this to be an official medical term. ;-) From now on I can tell the kids that my doctor has told me to take a chill pill so, as Doctor Mom, I can tell them the same thing.

I really appreciate all of the prayers and concern many of you have blessed me with. The main challenge at this point continues to be with my legs and feet. The muscles freeze up when I walk, making me walk much slower than usual. It is a bother, but I am thankful to still have the ability to walk and drive.

I continue to be thankful for our recent Sunday School series on Biblical Contentment. Although I fail on a regular basis, these lessons will hopefully help me to regain my focus along the way.

Blessings
Ramona

Pride vs. Humility

Having an illness that outwardly affects my body as much as dystonia does is proving to be a huge lesson in humility. Slowly I have begun to realize how sinfully full of pride I have been (and still are). I often try to hide the spasms when I am around others, which of course tends to make them worse in the end. I bought a cane the other day, although I have been very hesitant to use it. Why the hesitancy? My pride gets in the way. I don't want people to look at me and wonder what the "problem" is. I want to look normal (OK, OK, stop laughing. No one with a dozen kids at home looks normal, do they?) Mostly though, I don't want my kids to worry about me.

Last night during our family time I confessed my sin of pride to the family and shared my plan for putting off that sin and replacing it with humility. I have renamed the cane - it is now a "humility stick". Everytime I use it I hope to put off my pride and put on humility. I will most likely have to do that on a daily (hourly?) basis, but I know that God will be my Rock during this time.

A good friend wrote me an encouraging email and mentioned that my "reach exceeds my grasp". I have spent a lot of time mulling that phrase over and I now see what she meant. Indeed, she was very accurate. I am continually taking on more than I can physically handle. Learning to live with Dystonia is going to mean admitting that I cannot do all of the things I want to. I need to shorten my reach and concentrate more on what I can hold in my grasp. The strength of that grasp may even change from day to day, hour to hour.

Perhaps God has given me an illness that draws the attention of others so that I can shine His light more brightly. When I am weak He is strong. I need to keep reminding myself that people are not seeing my weaknesses. Rather they are seeing the strength God has generously blessed me with to embrace His plan for my life. I fail each and every day, but God's mercies are new every morning!

In Need of Some Prayers

Dear Friends and Family,
I would like to share a brief prayer request with you regarding the neurological illness I have (dystonia). Twice this week I have had what are called "Dystonic Storms". Basically they are extreme body spasms from my toes up to my head. We were able to ride the first one out at home, but today I ended up in the ER with the second one.

Please pray that I will not become discouraged by these episodes and that I will continue to look for ways to share God's love through them. Also, please pray that the doctor in Birminghan will be able to give me some ways of dealing with these at home rather than having to go to the ER.

I also need to learn how to avoid these, if all possible, so pray for me to have the wisdom to discover how to best do that.

Thanks
Ramona

Today's Gift

Show me your ways, O LORD;
Teach me Your paths,
Lead me in Your truth and teach me,
For You are the God of my salvation;
On You I wait all the day.
Psalm 25:4-5

Today God gave me a gift. After having struggled with neurological problems continually for over a year now, I finally have a name for the illness. A Movement Disorder Specialist at UAB told me this morning, after careful consideration and a consultation with his partner, that I have Generalized Dystonia. I am so thankful that God allowed this doctor to have the wisdom and knowledge to make a diagnosis. Not knowing what the illness is has been a huge challenge for me over the last year, since one of my greatest temptations is a desire to be in control of my own life. I confess that I have ranted and raved in many sinful ways, demanding that God share this information with me. However, in His infinite wisdom He chose to make me wait and learn many lessons along the way.

Having this gift (the name of the disease) does not change my physical condition one bit. It will be helpful in allowing me to concentrate on learning more about it, though, and finding ways to manage the illness. Knowing what it is also helps the doctors to know how to better help me with medications. Dr. Nicholas gave me a new prescription today that I will be taking for the next three months, to see if it helps alleviate the symptoms.

What is dystonia? Here is a brief description: "Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords." The full description can be found at http://www.dystonia-foundation.org/defined/. The doctor today told me that the cause is a "chemical imbalance in the brain." Apparently the type of dystonia I have (generalized - adult onset) is "very rare" and mine is an atypical case even of that. Of all the body parts listed above, only my vocal cords are not involved at this point and the spasms are continual throughout the day.

Doctors do not have a cure for dystonia and it is considered a life long disease. Unless God chooses to heal my body I will most likely have it the rest of my life. Of course we will pray for healing, but mostly that God will use this illness as a way for me to shine His light in this "jar of clay". Medications may help alleviate some of the symptoms, as there plenty of medicinal options to choose from. I hope to do some nutritional research too, now that I know what direction to search in.

Thank you all so much for your prayers this past year. God is indeed merciful and faithful in His answering of them. I would appreciate continued prayers as I serve the Lord through this illness and learn ways to better deal with my physical limitations.