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