Thursday, October 25, 2012

Crab Balls

Just had some yummy Crab Balls for supper here in lovely Lanham, Maryland at Jerry's Seafood, a "fine" dining establishment. I ate there one other time last spring but chose the Crab Bomb over balls as I had voracious appetite that day. Today, not so much.

When I had the Crab Bomb I was also here in Lanham to see my neurosurgeon aka Superman, Dr. Ahhz, The Man... for a little check up for my cervical incision (from my post-occipital craniectomy with fusion to C2 using harvested ribs 7&8.) It seemed as though I had an internal stitch that never dissolved and I was not healing. So, I went back to NC had a local plastic surgeon open it up and clean it out (debridement) and close it up - out patient surgery. Six days later I got out of the hospital on a boat load of antibiotics and a PICC line in my arm. Six weeks later the PICC line comes out and I finish my antibiotics,  I'm all healed and better. That puts us around mid June, 2012.

Here we go again, my incision decided it was still angry and flared up again... so I am back to the doctor, back on antibiotics and they tell me it will probably be for the rest of my life. Whoaaaaaa. I plan to live a long time!  This is the kind of thing that happens to those of us with EDS (Ehlers Danlos Syndrome - Connective Tissue Disorder) . We don't heal properly... and such.  Time to call The Man with the plan! My fabulous neurosurgeon in Maryland.

Two weeks ago I saw Superman and he said we're going back in. Apparently, there has been an infection that has tunneled down to my hardware (the titanium plate in my skull and the two rods to C2). Thus, the thinking is there is an infection in the hardware. Soooo, in the morning, bright and early with the birds chirping and the sun rising, Superman will take out my hardware and replace it. Apparently, now there is a low profile model of my hardware so I'm getting an upgrade. Additionally, he is going to revise the rib graft that is between the rods because my fusion is very thin. I believe this is the dirty work of EDS yet again.

The OR is scheduled from 7:30 - 11:30 so by the time you have your "Crab Bombs" for lunch I should be in recovery :)

David will be updating my blog to keep you posted on my status. Thank you so much for your care, support,  and most of all your prayers!

Thanks for reading,
Leigh Anne

Thursday, March 8, 2012

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!  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

Tuesday, February 14, 2012

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.

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 ( 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.

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

Friday, April 22, 2011

Chiari & Tethered Cord Battle Scars – My tattoos ;)

I’m proud of my scars! This past week I traveled to Spartanburg, SC about 2 1/2 hours away from here to go to our niece’s debutante ball. The drive by myself was very liberating. I didn’t even talk on the phone but did listen to a lot of really good and really loud music.

When I got to my parents’ home I cried…again. It was the first time I had seen them or any of my family since the week before my surgery Feb. 15 & 18th. The last time I saw my family I was really afraid that might be the last time I saw any of them without possible major surgical complications. I was terribly afraid of stroke.

The risks that go with Tethered Cord and Chiari surgery are not small. “Dr. Ahhz” is in my opinion one of the world’s BEST and GREATEST neurosurgeons but things can happen when you are in surgery no matter who you are. The big risks that were on my mind were stroke, meningitis, and surgical site infection. I never really thought too much about paralysis, cardiac arrest or sleep apnea but those are biggies, too. Oh, and let’s not forget allergic reactions and death.

What people often don’t understand is that if you have EDS there is no telling what’s going to happen with you with surgery. EDS is a collagen deficiency on the cellular level so much of your body is or maybe affected by it. Your tissues may be incredibly thin, you may not heal properly, you may have severe allergic reactions to common medications, and many more complications depending upon the type of EDS that you have.

With all that going thru my mind I did a lot of thinking, praying, and trying to get some “life details” together before I left for my surgery. I am so very thankful that I have come thru these surgeries healthy and well. I am happy and I feel good! (It will take about a year to get my energy level up.)

At 8 weeks to the day post op, seeing my parents was quite emotional for me. When I sat down and talked with them I realized how little they really understood about the Chiari and Tethered Cord surgeries. So, I described to them the procedure for each incision site and the special details that went along with each one. (As simply as I understand it.)

The Tethered Cord surgery incision is located at the base of my spinal cord. At that time a spinal tap/lumbar puncture was done to check my cerebral spinal fluid pressure. The incision was made and my neurosurgeon dissected down to the point of attachment of the spinal cord to other tissue/bone and released the attached spinal cord. This involved opening the dura or covering of the spinal cord and going into the arachnoid space of the spinal cord. After the surgery I was required to lay completely flat but could turn on my sides for three days to prevent cerebral spinal fluid leaks, csf pressure build up and other complications.

There is an incision at my left shoulder blade. This is where portions of ribs 7 & 8 were removed and used for the fusion of the sub occipital to C2. Additionally, nerve roots T7 and T8 were purposely cut to prevent further pain. That feeling has taken a while to get used to but seem fine now.

The sub occipital and cervical area for the Chiari surgery site has the most significantly sized incision although my hair is now covering much of it. “Dr. Ahhz” opened that area, cut away part of my lower skull (the sub occipital) to make room for my cerebellar tonsils, screwed in a titanium plate, repositioned the angle of my skull to my spine (corrected the clivo-axial angle), and fused the sub occipital to C2 using my ribs 7 & 8, titanium rods, and screws. This fusion is to provide stability for my head so that I will not be a bobble head from the muscle instability caused by the EDS.

My adult height used to be 5’7” and I shrank to 5’5” partially because my head had settled down on my spine. I am happy to report that after the surgery I am at 5’6”! Yippee.

While at home, I showed my incisions to anyone who wanted to look and told everyone my “elevator story” of Chiari, Tethered Cord, and Ehlers-Danlos Syndrome. I am so fortunate that I don’t have a terminal illness but Chiari, Tethered Cord, and EDS steal your quality of life and yes in instances do end it.

As of today, my surgeries have been amazingly successful! There are so many stories of Chiari patients that have had multiple surgeries that have gone wrong. It is very important to understand that if you are in need of any of these surgeries make sure that you have a very experienced and competent neurosurgeon. DO YOUR RESEARCH! Your brain will literally be in your neurosurgeon’s hands! Have it done correctly the first time!

Thank you to “Dr. Ahhz”! He and THE LORD did an amazing job with me!

Overall, the ball was beautiful, I wore high heals, and yes – I did dance! Remember, I’m only 8 weeks post-op J

I’ve enclosed some links for the above conditions.  If you are interested in more information please visit

Thank you again for all of your thoughts and prayers. Feel free to ask me any questions!

Blessings to you all,
Leigh Anne

Friday, April 15, 2011

A good mess of emotions :-)

Right now I’m just a mess of emotions. But they are good ones. I’m so excited because for the first time in 9 months or so I’m going to drive two and a half hours by myself to see my family. 9 months ago I could not get behind the wheel  for that length of time. I basically drove to preschool and the grocery store.

This morning as I prepare to leave I realized how much of my life I’ve missed and I hopefully now have back. At that moment I fell to my knees in tears thanking The Lord for getting me through this.

Thank every one of you for every thought and every prayer. I have felt each one of them and I am truly humbled.

Happy is a Great Place! Life is tough but God is Good! I’m going to make a t-shirt with that on it.

Love and blessings to you all,

Saturday, April 2, 2011

It was a quick trip

The trip to Merry Land was a pretty quick one. We got up there, I had my CT scan and made a new friend in the waiting room, and then saw my Neurosurgeon.

In the examining room he looked at my neck/head, shoulder, and lower spine incisions. He thought the shoulder and lower spine looked very good but didn’t like the neck/head. He said it wasn’t infected which was wonderful news. However, it’s just very inflamed and hard as a rock underneath. He mentioned perhaps I was allergic to the vicryl sutures underneath but was then able to touch and manipulate the incision site with out too much discomfort to me. We discussed my cervical glands and the fact that after the antibiotic they are still a little swollen and it seems that many EDS patients have this.

We moved into his office. It’s pretty cool that I saw him an hour after my CT scan and he already had the images on his computer. Apparently the images were unremarkable. For the incision site I’m instructed to put Vitamin A& D and Cortisone on it and wash it with saline water.  Also, I explained that I’m very fatigued in the middle of the day and he said it would probably take a year for me to get my energy back. We discussed that my neck is/was very stiff and I had little range of motion. I’m scheduled for physical therapy the next day - Tuesday.

My physical therapy was wild. I saw Dr. Yon (that’s not his real name but that’s what I call him.) He examined my neck incision site and felt all around my neck, shoulders, and upper back. Dr. Yon determined that the reason my incision was rock hard was because I had a muscle that had knotted up in there. I think it’s my right sternocleidomastoid muscle and clavicular muscles that are really in knots along with my traps.

Dr. Yon manipulated the muscles with his hands and then pulled out the needles. Yes, needles. I had Dry Needling preformed on me. The needle is inserted directly into the muscle’s trigger point and it makes the muscle release immediately. It was not the most comfortable thing to have needles tapped way down into your neck but it worked. I know you are thinking that sounds like acupuncture but it’s not. Dry needling is quite invasive where acupuncture is more topical and based on meridians, chackras, and such. (At least that is how I understand it.)

After the first needle the headache that I had became much more painful. Dr. Yon explained this to be referred pain. As he released the muscles more and more then headache grew worse and worse. My muscles were putty by the time he was through with the needling and he had deeply manipulated these muscles by hand. I had much more range of motion after the therapy and a huge headache.

Then in his thick accent told me to quit wearing the collar except for when I’m in the car. That made me very happy. He referred me to a physical therapist here in Greensboro.

While I was having my PT, David took Grace to the Natural History Museum and The Mall. We met back up and hit the road. A quick and action packed trip.

Overall, I’d have to say it was a great trip with great news. I’m looking forward to more physical therapy to keep my muscles happy.

Thank you all for your thoughts and prayers. I appreciate every one of them.

Blessings to all,

Thursday, March 24, 2011

My new lease...

If I put myself into a cocoon will I come out a beautiful butterfly and flutter on the warm breeze in the sun?

My new lease may have had a loophole…we’re renegotiating.

Sometimes when you feel better right off the bat… it catches up with you and your body says…. “Oh no you don’t. You’re not quite as ready as you think you are!” Why don’t I ever learn?

My neck incision seems to be a bit inflamed so it’s time to go back to Merry Land for a CT scan to see how it’s doing on the inside. My fear is that the fusion is not taking. I have a sensation of movement beneath the incision but it might just be scar tissue. This fusion may be taking longer than we originally thought but I have confidence that it will fuse properly.

Having the surgery was still the right thing for me to do but it’s tough changing your lifestyle. The simplest things are different now.

Instead of pulling Grace back on her swing now I have to remember to just push gently. Then I remember that I’m lucky to be able to be outside with her.

Instead of bending over to pick up something up off the floor I have to think about how to best do it. Heaven forbid it’s over ten pounds or I have to just leave it there. That’s difficult for me because when I want something done I want to do it now. However, I am learning patience (and of course I’m learning it the hard way.)

The outpouring of kindness and support from friends and family is overwhelming.  We appreciate it more than you know.

Thanks for caring, LA

PS – Please pray for our military, those affected by the crises in Japan, Libya, and around the world.