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


  1. Leigh Anne,

    I am a Chiarian and also have survived decompression surgery, meningitis, hydrocephalus, a large syrinx, have had multiple spinal taps, and a lumbar drain. My neurosurgeon told me my syrinx has returned, and my cerebellum is dropping within the last month. I'm going to the Chiari Institute in Long Island next month. I don't have a diagnosis of EDS as of now, but have been screened by a geneticist for it. I question if my Dad & Sister have EDS, but my sister doesn't have a chiari.

    I have answered a lot of false positives for the tethered cord syndrome. I wanted to ask you more about what you went through and how you came to find your diagnosis.

    Thank you so much - from one survivor to another,

    Gina Thomas (

  2. Hello Gina,

    Thank you so much for your comment. You would not believe how many times I have tried to reply to your comment and it would not save. We have changed our server settings and such and that had something to do with it. Anyway, I'm finally answering you.

    My neurosurgeon is Dr. Fraser Henderson and he and Dr. Murdock who is my urologist diagnosed the tethered cord using urodynamics testing. Both doctors are in Lanham, Maryland and I wouldn't go to anyone else! The urodynamics testing is not very pleasant but is a wonderful indicator of the severity of your tethered cord. (My EDS geneticist is Dr. Claire Francomano at the Harvey Institute of Genetics in Baltimore, Md. and she works with the doctors at TCI, also. You may want to check her out.)

    For me the hardest part of the TC surgery was laying flat as to not "spring a leak" of cerebral spinal fluid. But again, that's just inconvenience. I had wonderful results from the surgery but I also think that I was an excellent candidate for the surgery.

    Please don't dismiss the fact that you may experience issues that may seriously complicate any surgery that you may have. Blood clots for example.

    I'm so sorry your syrinx has returned and I'm wondering about your cranial stability. Feel free to email or facebook me.

    My thoughts and prayers are with you on this lonely and painful journey.

    Take Care,
    Leigh Anne