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

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

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 & 18^th. 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 http://www.csfinfo.org/

http://en.wikipedia.org/wiki/Arnold–Chiari_malformation

http://en.wikipedia.org/wiki/Tethered_spinal_cord_syndrome

http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome

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

Blessings to you all,

Leigh Anne

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,

LA

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,

LA

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.

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

Pictures

Daily outing to Emma Key's

The bandages: neck, shoulder, sacrum

neck incision: suboccipital craniectomy w/ fusion to C2

Really bugging me

This weekend has been amazingly beautiful and the daffodils are up everywhere. Have any of you ever cut daffodils and put them in a vase of water colored with red food coloring and over a day or two the flower starts to turn red? I did that yesterday and David and Grace thought that was the coolest thing they had ever seen. David had never seen that before and over the weekend I found more people that had never heard of doing that. Hasn’t the whole world seen that science trick before?

Well, I guess the whole world does know what’s going on in Japan. All the people that need medical assistance, a soft dry place to sleep, clean drinking water, and food. God please look after these people affected by the earthquake and tsunami.

In the meantime, here I am in my cozy bed typing away thinking about what I really want to say and what I really should say. I’ll go for the latter.  My wounds are healing nicely and itching like crazy which is a good sign. My hair is growing back in at the base of my skull and that is making me rub my head against my brace like a cat rubbing up against the corner of a chair.

The meds. Today I just took Tylenol because of soreness but I do not have a headache, I feel my feet, my back doesn’t really hurt and I feel good. But tonight I had to go back to the heavies and take a Demerol. For some reason my ribs want to give me trouble at night. At about 9 PM I think it’s ribs #7 and #8 say, “ Okay, we are off duty, time for a shift change…”  literally. This is new and really bugging me. It’s just not fun when something irritates you.

It’s about now that I really want to unload and then I think about the victims of the earthquakes, I think about how families are sitting at the bedside of a loved one waiting for him to wake up from a coma, I think about friends who have recently lost a family member, and then I think about how all these people are feeling: sad, hopeful, lost, lonely, thirsty, hungry, hurting, desperate. Thank you Lord for the blessings you have bestowed upon us and please be with all that need your comfort and healing.

Time for me to get over my ribs bugging me! 7 and 8 and I are hopefully going to sleep.


If you would like to learn more about Chiari Malformation, Tethered Cord, Ehlers-Danlos Syndrome please visit  www.csfinfo.org 


Thanks for reading. LA

Very Thankful

The outpouring of love and kindness is overwhelming. Thank you all for helping my family and me get through this crazy event. As I’ve been saying, “We are so blessed in every way!”

Yesterday, I went in for my annual ob-gyn exam. Of course was scheduled about 6 months before my surgeries were scheduled. David dropped me off, took Grace to school, and came back to the doctor’s office to get me. The nurse brought Dave back to the exam room and Dr. Cousins and I were talking. She loves to give David a hard time but this time she looked at him and said in her Caribbean accent, ”Man, I was gonna tease you but I don’t have the heart to with Leigh lookin like dis.” Then she got very serious and explained to us how truly blessed we are that we were able to have Grace and that she is very appropriately named Grace. Then she laughed and said something like, “guess that answers the question of whether or not your gonna try for more babies!”  She knew we were not but it would be a medical nightmare for us to try after the Chiari, Tethered Cord, and EDS not to mention that I’m 43. The crazy thing was that Dr. Cousins was the one who kept telling me there was something going on with my having a low thyroid and low body temperature, and folic acid deficiency. She said, “ I never would have put this together – but now it all makes sense.”

I had a check up with another family doctor this past week and I told him about my reaction to the antibiotic vancomycin and my having “Red man Syndrome” (a reaction to the vanco) after it was injected. He thought that was really interesting because he’s never actually seen it happen. Of course, if a medical professional doesn’t know you have a form of EDS you may very well become an enigma. Very luckily, Dr. H my neurosurgeon is not caught off guard with these weird reactions as he has lots of patients with different types of EDS.

David and I left the office again feeling very very blessed. Although this has been a difficult time for us we have tried to keep a positive attitude about all my “new” medical issues. We just push through it. But each time I see a doctor whether it is my family doctor, gynecologist, or friend in the medical profession they all remind me of how serious these conditions are and how lucky I am. Maybe it’s just easier to keep my head in the sand and go with the fact that I’ll never be a down hill skier.

I’ve decided today is the day. No more pain meds for me unless it’s Tylenol or Advil. (I will keep the muscle relaxer as needed for unexpected muscle spasms.) Over the past week I’ve been cutting back on them each day so I think I can do this.

Have a great day everybody and enjoy this beautiful day anyway you can!

This is really going to happen...

It is amazing how David has just jumped right in to keep us on schedule to leave on Monday (2-14). He got Grace off to school and she was so excited because they were having the class valentine’s party and she had a playdate after school. I’m trying to choke back  the tears and Grace can’t get into the car fast enough to leave. That gave me comfort and joy knowing that she was happy.

David and I hit the road and eventually go thru DC and get checked into our hotel. Sigh, the fun begins. I look at the clock and realize that I have two hours left until my “cut off” for surgery. My appetite was not very big so I went down to the lobby and ordered a ginormous decaf Margaret Misto and headed back up stairs to eat my granola bar.

I slept well. We got to the hospital on time, registered and the ball was rolling. It’s party time now. “Strip your clothes off, put them in this bag, gown open in the back, here’s the cup, there’s the bathroom, you know what to do.” The nurses and everyone were super sweet. They called David back and we were just hanging out taking with the nurse and waiting for the next flurry of activity. I scratched my head and I scratched it again. Then I think, ”I’m not a head scratcher.” I ask David if his head is itching and of course it’s not. Then I feel the first bump, I tell the nurse, and guess what…this is the next flurry of activity. “Check her chest,” the nurse says. My chest is beat red, as is my face and body. By this time I’m throwing up and my head literally feels like it’s exploding.

The nurse has stopped the drug and trying to comfort me. Dr. H has gotten there at this point and is telling the staff what to do and talking to David and me at the same time. I was in so much pain I couldn’t talk, cry, scream, or open my eyes. I was communicating with David by pinching and squeezing as hard as I could. After I finished throwing up in the bed pan I composed myself and smiled at Dr. H and asked how he’d been since I saw him last. He chuckled and looked at David and said, ”There’s our girl” He continued explaining that Ehlers-Danlos patients are often very sensitive to drugs that other patients are not. I turned over, flashed my back side, and he used a magic marker on my sacral spine area and an area next to it to mark the spot for the lumbar puncture. He said is there anything else you would like before we head into the OR? I asked him if he would say a prayer and he did and it was beautiful! I was confident that The Lord would keep me safe and guide Dr. H, too.

I kissed David and said I love you and the next thing I remember was smiling at him and holding his hand and David saying, “You did GREAT!”

God IS Good!!!

The outpouring of kindness, generosity, and love is overwhelming. Thank you all for everything – every thought, prayer, message, and your support. I could not begin to make it through this without you all. 

Is it really over?

Friday, February 18th was the day of my "brain surgery." My appetite had been little or non-existent, but water, ginger ale, and coffee were still very much in demand for my liquid menu. My surgery was scheduled for sometime around 2:30PM so I had to go from midnight to mid afternoon with nothing to drink. NOTHING can you say torture?
Around 8AM the nurse came in with my breakfast tray - oops... sorry you don't get any. Noon, the nurse comes in with my lunch tray - oops...sorry, you don't get that either. Well thanks a lot! My mouth was literally so dry that I could not talk. Have you ever had that happen to you? It is miserable. It is like your tongue and the roof of your mouth are velcro. Anywhere you move your tongue it just gets stuck there - very pleasant.
Finally the sweet nurses came to take me to pre-op. David, Lee, the nurses and I  were laughing so hard at the nurses. They got me into the pre-op and again I asked for some TUMS - but they hooked me up with something better that tasted like sweet tarts :) Then for the first time in 4 days I was allowed to stand up and walk around a little.
Of course I don't recall the operating room but do remember coming out of the anestisia and hearing the words NG tube.

Tubeless

Leigh Anne no longer has any tubes coming from her, or any machines connected.  We are hopeful to be released from the hospital to the hotel later today and may be able to travel back to NC Wednesday.

I hear the Daffodils are starting to come up, can't wait for spring in North Carolina!

On the Road to Recovery

Lot's of action and progress today.  Leigh Anne sat upright in a chair for an hour or so this morning and took a short walk down the hallway this afternoon.  They also removed one of her IV's.  We are having trouble finding a comfortable setting / position for the neck collar she is wearing which is causing both of us to be a little grumpy.

Leigh Anne say's she loves everybody!

Suboccipital Craniectomy with fusion to C2 complete

Leigh Anne is in recovery, Dr. Henderson said everything went well and as planned.  She has a difficult 24-48 hours ahead of her as she has taken quite a "smack"

Suboccipital Craniectomy with fusion to C2 underway

Leigh Anne entered surgery around 3:00 this afternoon.  Just prior to going in she was able to get out of the bed for the first time since Tuesday.  All are in great spirits.

The Calvary

The Calvary arrived last night in the form of Lee Morphis, one of Leigh Anne's closest friends from Greensboro.  Lee has rejuvenated both of our spirits and has been a welcome help.  Leigh Anne is doing much better today, resting more comfortably and very talkative.

Her surgery is scheduled for 2:30 this afternoon.

Prayers

The second day is always the worst

They say the second day after embarking on a new fitness regime, or working in the yard after a long winter, is the worst for sore muscles.  I guess the same can be said for surgery.  Today has been tough for Leigh Anne as she struggles with an all over body ache caused in part by the operation, but mainly by being on strict bed rest.  Fortunately medications have helped keep her as comfortable as possible.  It has been a very quiet day.

Our former Pastor and friend David Fischler paid a visit yesterday afternoon lifting both of our spirits.  Very good to see him.

We have not yet confirmed the time of tomorrow's procedure and will update as soon as we know.  Leigh Anne is maintaining a positive attitude and we continue to be blessed with prayers and well wishes from around the world.

Lunchtime

Garden salad with hard boiled eggs, ranch dressing and fruit cocktail.  Leigh Anne is resting comfortably on her back and sides, in very good spirits.  Dr. Henderson saw us at 7:00 am this morning and confirmed everything went well yesterday.  She will be on bed rest until the second surgery Friday.  She does get to lift her head 10 degrees tomorrow, which she is already anticipating.

She is especially enjoying the compression stockings on her legs and the electric ice pack on her back.  Now time for her afternoon meds.

We are humbled and thankful for all of the support we are receiving from our friends and family, those in Greensboro especially.