When I first visited Dr. Fraser Henderson in October of 2011 I was in every way desperate. I was in bed 20+ hours a day and could not function. Because of Danica's journey several dear women who followed our story here on this blog and connected with me privately about my own mention of similar symptoms and chronic pain pointed me in the right direction. I knew all the right scans to ask for to finally make a real determination about how I might find some relief. Because of my compromised brain stem and instability the brain decompression and fusion of the skull base to C2 was performed on November 21st, 2011. During those first visits in October we discussed tethered spinal cord. I had indicators on my imaging including at the thoracolumbar junction a 30 degrees of kyphosis on forward flexion which is very abnormal. I had a syrinx in my lower thoracic spinal cord. Scoliosis of the syrinx in the lower cord is an indicator of tethered cord syndrome. In the lumbar spine I had CSF present below the S2 level with a 6mm Tarlov cyst and increased CSF space throughout. These are also indicators of tethered cord syndrome. Dr. Henderson referred me to a urologist locally, Dr. Murdock, and he diagnosed me with detruser sphincter dyssynergia consistent with neurogenic bladder. This also suggests a tethered spinal cord.
At my 10 week follow up with Dr. Henderson from my first surgery I explained although I had complete relief from the suboccipital vicegrip on the back of my head and neck and much feeling returned to my arms and hands I felt even more aware of my lower spine issues. It literally felt like someone was tugging my head backwards. I had a lot of neck pain that seemed unrelated to just surgery recovery. Also the weakness in my legs when I swayed my back in at all or tried to walk or climb stairs would bring me to my knees. My bladder issues, the most pronounced being the inability to completely empty my bladder, continued. We decided to move forward with scheduling the surgery. This visit was on January 23, 2012. I still felt like I had much farther to go in my recovery from the first operation. I think I was especially unready emotionally to go back in because the decompression/fusion surgery is huge and the complications and healing process are so varied and all consuming.
In hindsight I wish I had scheduled the tethered cord surgery sooner. As time wore on my symptoms truly did become worse. This is often reported in patients who have the decompression/fusion first. Still, right up until the morning of March 28th I waffled mentally about what I was about to do. Much of this came from negative press surrounding tethered cord surgery in general from other institutions. I had read too much on the internet and become confused. Also, Danica's most recent MRIs in Cincinnati had "ruled out" tethered cord as the cause of her continuing bowel issues. I still have a mother gut feeling she too has this condition. I have not had the energy to pursue with other specialists, but that will need to come this year as well since we plan to send her fulltime to preschool in the fall.
After a grueling car trip to Maryland and paperwork snafu after paperwork snafu and a PIC line debaucle I was ready to just be put under and get the show on the road. One of the many symptoms of my EDS is a very bad TMJ issue. This has gotten much worse since my November surgery. I can barely get my mouth open two finger lengths. Apparently the intubation went horribly wrong. The anesthesiologist told me post op it took him five tries to get the tube in. My throat was completely raw and one of my bottom front teeth was chipped.
The operation performed by Dr. Fraser Henderson was a microsurgical laminectomy, partial S1-S2, electrophysiological mapping of cauda equina, untethering of the cord, dural closure with tissue; dissection of Tarlov cyst; dural patch graft and sacral laminoplasty.
The recovery went pretty much as expected. Dr. Henderson keeps his patients lying completely flat for three days following surgery to minimize the risk of CSF leakage and meningitis. My pain level on day two was much greater than the day of surgery. They did a wonderful job of keeping me comfortable and listening to my particular needs. I have to tell you I am a really good advocate for myself and others when it comes to medical care. I have knowledge of almost every drug possible and keep any nurse or PA on their toes. Another side effect of EDS is the varying rate our bodies metabolize drugs. I build a tolerance very quickly to IV and oral pills and often need my doses more frequent than others or a bolus to get me through to the next regular dose. I know what drugs work for me and what drugs do not. The team at Doctors is wonderful about understanding EDS patients and accomodating for these special needs.
My PIC line did go bad on day two. Remember how I knew something was wrong? I just thank God it got me through surgery. This is one of the situations where the day nurse was not very good at listening to me, and I kept insisting the PIC was bleeding and leaking fluid. She changed the dressing and it bubbled again. I was pretty mad. I insisted they remove all the surrounding dressing and look. Sure enough, it was blocked. One of the special radiologists that does PICs came to my room to get me and take me back to do one in the other arm. Even though I had a sign on my door letting people know how sick perfumes and other chemicals make me he came striding in with a half a bottle of POLO on. My reaction was instantaneous. I turned completely red and hot and my throat closed up and I was gasping for air. This was actually a good thing in the long run because it is important for medical staff to really see how dangerous my reactions are getting.
My surgery was on Wednesday and Saturday morning I was so ready to head to the hotel. My favorite nurse in the world, Sudha, was there, and she was so on point. The paper work was all ready and the prescriptions and when Dr. Henderson strode in to see me and give the final okay I had already peed twice with the cath removed and was raring to go. I have to just say here again that the work this man does is not normal work. He is different from you and I. Every facet of his being is committed to his patients and research and the work he does. He draws strength from God. This is his calling. I love this man and pray for him every single day. The stresses put on the few surgeons in the United States who have given their lives over to helping EDS patients with Chiari and tethered cord are under attack in many ways right now. I would ask that you would pray the work they do will not be hindered and patients like me who truly need these surgeries would be able to access the help they need.
I am really sick in other ways, but I am amazed at the results of the surgery and the relatively quick recovery. My incision site is small and healing beautifully. I did get a UTI from having a cath for so long, but that is pretty par for the course for me. For as long as I can remember I have curled my toes under. My calf muscles have always been so super tight and cramped easily and also my feet and toes. I could never lie flat in bed and had restless leg syndrome. Walking or standing for long periods of time had become impossible for me. The relief in my neck is the most pronounced. I have not had ANY neck pain since my surgery. Literally the cord pulling my neck back and so tight was clipped and now my head and neck can relax. My legs and feet feel so much more normal.
Bottom line is I needed this surgery, and I am so thankful I had it done. I'm sure as recovery progresses I will notice even more improvement in areas. This surgery is not suggested lightly these days, especially in light of litigation. If your trusted doctor builds the case for you I would suggest you consider the relief it could bring.
I hope this has helped a little for those on the fence about one of the many issues facing us who share this strange mixed up diagnoses. Do your research, listen to your body, trust your gut and have courage!
A special thank you to everyone who donated to help with my surgery and who prayed so faithfully for my family and I. Our hope remains!