It's a beautiful morning...

     It is a beautiful March morning; it seems that spring is beginning to bloom and I LOVE IT! As I drove our daughter to school this morning we were listening and singing along to Shiny Happy People and I thought about how amazingly blessed I am. For the most part, I feel GREAT!
     As for my Chiari Malformation, I do not know how the herniation is doing but my symptoms are much fewer and further between, as are my symptoms from Tethered Cord, POTS, and EDS. Don't get me wrong, I still have pains and symptoms but these days when a symptom pops up it doesn't hang around very long and I just ride it out. For instance, my back was aching pretty badly by the end of the day yesterday but after a good night's sleep I awoke feeling well rested and no backache. THAT IS HUGE!  The good night's sleep is huge, too as I used to wake up all night long and not really sleep. Now I rarely wake once during the night. My neck incision is still trying to heal and I am back on antibiotics for the 7th or so time but it is getting better...again. (I would really like to wear my hair in a ponytail.) Now, all that being said, I am trying to take care of myself. It's not fair to my family for me to NOT take care of myself.
     I am a different person since all this medical mess happened to me. My confidence, tolerance, and thinking have changed. My confidence is lower, my tolerance to certain situations is higher, and I have to remember to really think about something before I do it. Yesterday I attended an MS luncheon/fundraiser and heard a fabulously motivating speaker, Bobbi Doorenbos. She spoke about self pity, pain, and purpose. These things are very close to home for me. The awesome thing that we have in common is that we are both moving forward in our lives despite a devistasting diagnosis and discovering/looking forward to new purpose. She spoke of the book The Butterfly Effect which I have not read but I will! That resonates with me because if a tiny little butterfly's fluttering wings can have an effect on the other side of the world then certainly I can have a positive effect on others in at least a small way.
     I am not sure how I'm going to do that but awareness for Chiari and related issues is on the list for me. As you may have read in my blog it took me 22+ years to be diagnosed with Chiari and for a doctor to realize that was my part of my health problem. Last month, David and I took our daughter for a "screening" as our pediatrician had recommended. The specialist said,"Why are you here?" We told the doctor my story, our daughter's "symptoms" and that we wanted her screened for Chiari Malformation, EDS, and Tethered Cord. (To diagnose Chiari you usually need an MRI  but not necessarily for the other conditions.) Immediately the doctor asked me if I had sacral dimples or a hairy patch on my lower back and I said no. Then he tells us that unless you have one of these two things then you do not have tethered cord implying that I did NOT have tethered cord. Immediately he lost credibility with us as you do NOT need to have either dimples or hairy patch to have tethered cord although many times people with tethered cord do display one of these. Tethered Cord is diagnosed not by external signs but by having a urodynamics study to see how your systems below the waist are functioning.
     Then doctor begins to address Ehlers-Danlos or EDS and examine our daughter. He determines that she has "Joint Laxity" but not EDS. After that doctor says there is no need for an MRI to check for Chiari because there is no founded reason for one, insurance would not pay for it, and if we chose to have one it would be at the hospital, under sedation, and an out of pocket expense. Then doctor tells us that doctor's integrity is at stake if an MRI is ordered under false pretense as doctor sees no reason for MRI. Additionally, doctor says,"Anyway, it's not considered Chiari unless the tonsillar herniation is 9mm." WRONG! http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm  The National Institute of Health does not put a measurement on Chiari and Chiari symptoms may be present even if the herniation is very small. In other words, size does NOT matter with regard to symptoms or permanent damage.
     This is a doctor that is uninformed and practicing medicine as insurance companies dictate. That is not the kind of doctor I want and there are many of them out there. As a patient you must educate yourself, screen your doctor, and be your own advocate.
     Our child was given a fabulous bill of health and told no medical testing or restictions were needed. This is GREAT but I ask myself if this is prudent given our family history and symptoms that are being displayed. There is more to this story that I will share another time.
     I guess I have flapped my wings enouth for this morning and hope it helps someone. Have a GREAT day and make the most of it.
     May The Lord bless you :)
              Leigh Anne

IT IS a Happy Valentine's Day :)

Happy Valentine's Day! Almost everyday since my last post I've meant to update my blog and think about what I'm going to put in it and then life gets in the way. This is a GOOD Thing because I have a life again :)

Last night, David and I were talking and I said, "Do you realize that at this moment one year ago we were getting our last minute details together for us to leave to go to Maryland for my surgeries."

David said, "Oh my gosh, you are right!"

My response was, "I never really thought about what my life would be like one year after my surgeries. I'm so blessed and my life is so different now and much more normal." I thanked him and I thank The Lord and Dr. Henderson for my surgical successes. That was such a huge event in our lives and our entire family live with the results of that event every day.

Over the last year we have had so many blessings, changes, and hurdles. But for the most part everything has been very positive. Grace is blossoming in her new school, we have made many new friends from so many different realms of our lives, and we try not to take ANYTHING for granted because we know how quickly life can change.

Here are the highlights of my recovery:

I have officially been diagnosed with Ehlers-Danlos Syndrome - Classical (Classical EDS) type by my geneticist Dr. Claire Francomano at the Harvey Institute of Genetics in Baltimore, Maryland. I think she is also the BEST in her field. That testing consists of going over much health history, lots of measuring of body parts, pokes, and prods but not blood testing. I am a 9 of 9 on the Beighton Scale. (My rheumy here said I was 4/9...ha!) My knees and shoulders ocassionally pop out or sublux and it seems that I'm a little more predisposed to bursitis. But the really bad thing for me is that I do not absorb vitamins which creates many issues over a long period of time. Hence, I try to live a healthy and "relatively" holistic lifestyle. Dr. Henderson says EDSers should go Gluten Free but oh goodness that is difficult. www.ednf.org

I have also been officially diagnosed with Postural Othostatic Tachycardia Syndrome (POTS) by my cardiologist Dr. Klein, here in Greensboro, NC. He was amazing and I think took on my case out of sheer interest and curiosity. That testing consisted of me fasting and going to the hospital the next morning for a tilt table test (TTT) which is supposed to last about 2 hours. In a cath lab type area, I was strapped down on a narrow table and had an arterial line put in - ouch. You start completely horizontal and are raised to a 45 degree angle or so and then to a 90 degree angle. Your heart rate, blood pressure, and the amount of time it takes for you to pass out (or throw up) are measured and as I mentioned it usually takes about 2 hours. It took me about 5 minutes before I started sweating and starting to pass out. They immediately returned me to a horizontal position and tried to make me comfortable ... the test ended. I heard Dr. Klein behind the glass talking to my GP, Dr. Kim on the phone with such excitement in his voice...."She has POTS, YES, She has it."  Dr. Klein came in with this big smile on his face and said, "I didn't think you had it but you do. Eat lots of natural salt and drink lots of water."  I was terribly terribly sick the rest of the day. My doctors are starting to believe me.

My neck incision is "still healing."  This is probably because of the EDS and not the actual surgery.

The winter weather and cold fronts have been quite an adjustment for me as I now get pressure headaches when a low pressure system comes through. My body comes to a halt. I do have to take medication for these headaches and the nausea but this doesn't happen too often.

The muscle spasms are fewer and further between which makes life much more comfortable :- So basically I'm not on any painkillers or meds. Or at least I don't take them.

I have had the Spectracell micronutrient testing (http://www.spectracell.com) which is extremely helpful in showing vitamin deficiencies which are a horrible problem for the human population, as well as EDSers.

On the up side of things, I am usually able to feel something "coming on" so I am able to prevent an unpleasant situation from becoming a bad situation.

If you see me out and about and ask me how I'm doing I will most likely say, "I'm great! How are you?" I don't want to bore people with my health issues and but I do want to raise awareness about these cruel and horrific conditions that don't always end your life but do steal your quality of life. Thus, I have made a t-shirt that is made of organic, eco friendly fabric, and dye. It says... FASCINOMA profits benefit the Chiari Syringomyelia Foundation. www.csfinfo.org

I have so much more to add but will let you digest this first.

Please feel free to e-mail or facebook me if you have questions.

God Bless you and have a GREAT day :)
Leigh Anne
leighannebuchanan1@hotmail.com

I have a new lease on life

Have I told you that I feel like I have a new lease on life? Well I do, especially before about 3 PM when I’m out of the house.  My energy level is not up to where it used to be but I’m trying to be positive and hoping it will return soon. And, I’m off all the meds except for one that has no mind-altering side effects. Oh, I’ll just tell you. It makes my bladder work. Yup, I said it. If I said one tenth of what I was really thinking in this blog it might be slightly interesting/entertaining. But in the interest of being politically correct and polite I’ll try to tone it down a little even though I’m feeling more like a late night HBO monologue.

Right now I’m honestly thinking, “I’m almost 44, I have a 5 1/2 year old little girl that runs circles around me, I have a Zipper head, I haven’t had an adult beverage in 80 days, Japan is a pitiful mess and dealing with nuclear fall out, we are at war with Libya, and the Cleveland Park Train crashed and a child was killed and people were hurt. AND I can’t drive.”  That’s it… It’s the end of the world as I knew it. “And Lord please be with all those people that need your love and support!”

Now all that said: Thank you, thank you, thank you to everyone that has helped me/us get through this. We could not have gotten this far without your help! First Pres. WPC Moms and staff have totally kept Grace in a very happy place - thank you for all the play dates! Friends from all around have kept David and me happy with dinners and treats. This is where I start crying again because I am so lucky and blessed.

Chiari, Tethered Cord, and Ehlers-Danlos Syndrome are not pleasant and I am incredibly fortunate to have had the surgery that I did by the neurosurgeon that I did. And, I have a fabulous Chiari support family many of whom are from Spartanburg and I didn’t know before I was diagnosed. They help me understand what is physically happening in my body and why I may have a particular feeling or pain or why I may need this or that. For instance: I have the pill that helps my bladder work because of the Tethered cord and the fact that I had a Foley catheter in for a week. Thanks Lee for helping me out with that J

I’ve starting having an external burning pain on my left, front, lower ribs, which I’m told by my new Chiari sister Katy, is my ribs/nerves. That will go on the list of questions for my follow up with Dr. H the end of April. Hopefully I won’t have to take medication for this. I hate taking medicine mostly because my grandmother to whom I referred earlier was all about holistic healing. I know holistic healing doesn’t always work and that your body may need medicine and surgery every now and then but who really knows what the cost/benefit of taking a drug really is? I can tolerate a little sunburn type sting on my ribs without medicine but if it gets to the point of inferno and I can’t wear clothes then that’s going to be an issue.

The muscle spasms surprise me occasionally but are nothing like they used to be. The incisions seem to be healing nicely but my neck incision stays irritated from the brace. What should I call this thing, a brace, a collar, a nuisance or a protector, and giver of relief? I have a real love/hate relationship with this thing.

It’s funny because when I’m out of the house people stare at me and while I walk by them of course I say, “Hello” but I think they are thinking, ‘Hey look at that girl with the neck brace on … she must have been in a wreck… lawsuit.”  And then I think, “My nails look really nice and I’m feeling good today. Brain surgery”

Last week I spoke with the nurse at my neurosurgeons office and was given the “go ahead” to take off my neck brace for 3 hours at a time. However, I must still sleep in it, wear it in the car, and wear it during light exercise like walking. Driving is another issue. UGH! WHEN CAN I DRIVE? And, how long will I be in this thing? The purpose is for the rib graft to fuse to the vertebrae which may take a little while.

If you would like to know more about Arnold Chiari Malformation, Tethered Cord, Ehlers-Danlos Syndrome (EDS) and related issues please visit www.csfinfo.org

Thanks for reading and God Bless you and our great country! Leigh Anne