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