Steph,
This is a long post, but I want to relieve any concerns you may have about having surgery with Dr. Henderson and let you (and others lurking) know what to expect.
My experience with Dr. H
On October 31 last year, I had chiari surgery (craniocervical decompression, fusion, and stabilization) with Dr. Henderson ; then on December 1st, I had tethered cord release. I did have tethered cord.
Dr. H is busy and hard to get in to see, but well worth it. He truly, truly cares.
My daughter, my neighbor and my neighbor's daughter all had SUCCESSFUL Chiari and tethered cord surgeries with him. Dr. H is the absolute BEST in US, maybe anywhere. People come from all over the world to see him.
I have NOT heard of anyone who is WORSE after having surgery with him. Every other neurosurgeon defines a successful surgery as preventing the worsening of your chiari symptoms; Dr. H's patients GET BETTER.
The only tests that Dr. H ordered for me that you didn't list were:
(1) CT scan with rotational view 90 degrees to one side to rule out atlantoaxial rotary subluxation (ONLY one CT place in MD does this, and it is near Dr. H- he came up with it & "taught" them what he wants; no where else understands); and
(2) I had trouble urinating- if you do, maybe try to see Dr. Jonah Murdock for a urodynamics test to rule out neurogenic bladder. Dr. Murdock is AWESOME.
My symptoms
I was having all the problems you are having, plus some.
I had debilitating, constant intense pain in the back of the head, like I was hit in the back of the head with a baseball bat.
Plus, quoted from my medical record, except for [text in brackets]:
- double vision, photosensitivity
- trouble swallowing; choking
- imbalance [tripped walking, fell constantly; wobbled standing still, looked drunk]
- sensory loss [body and face numb]
- trouble urinating [neurogenic bladder]; irritable bowel syndrome
- hyperacusis [normal sounds bothered me]
- hyperosmia [heightened sense of smell]
- speech difficulty [slurred words- sounded drunk]
- trouble word finding, memory loss
- severe abnormality of sleep with severe fatigue to the point of narcolepsy
- diffuse weakness
- tremors
Dr Henderson's physical findings: [except for text in brackets]:
"....supraventricular tachyarrhythmia.....Sensation is grossly abnormal....unable to perform heel to toe walking....Dysdiadochokinesia [no rapid, alternating movement] ...motor [abnormal].... Reflexes [abnormal]."
"[MRI/CT's show] translation of the basion with respect to the odontoid process of approximately 5 mm......abnormal clivoaxial angle of 134.....Chiari malformation of approximately 6 mm to 7 mm...severe kinking of the medulla oblongata. On extension, the basion to odontoid distance increased to a near pathological level of approximately 12 mm."
Today- How I'm better
I have NOT had ONE chiari headache since I woke up.
My incision is TINY, (about 2 inches) ...today, it can barely be seen at all. My teen daughter's incision is even smaller- he made a point to try to avoid shaving her head at all.
This small incision helps you heal faster and lowers the chance of infection, too.
He closed our incisions with steri strips.
I am functioning better than I thought I would ever again (not normal, not perfect, but with EDS I thought I would not recover as well as I have).
The only thing I still have is muscle spasm headaches, some low back pain and narcolepsy.
Pain
Before surgeries
I was on serious meds AND STILL IN SEVERE PAIN ALL DAY!!!!
Today, I only take Fioricet every few days for muscle spasm headaches that originate in my neck (from EDS instability of neck & TMJ). Last month, I went to my pain doc and said I only needed Fioricet....he was shocked...said, "are you sure? I'm fine with still giving you these meds.. Are you really sure??"
Right after my surgery
The reason my pain doctor was worried about my pain is because I was in A LOT of pain after the surgeries...especially the tethered cord. I had to stay in the hospital longer because they couldn't get my pain under control. My pain was NOT controlled after the tethered cord surgery, even when I got home.
BUT I have major absorption issues from EDS & there were my 7th & 8th surgeries in 3 years (all others were common - c-sections, gallbladder, etc.).
So you may not have post surgical pain problems; most people I talked to have not.
The bottom line- my advice
PLEASE GET THE SURGERY IF YOU NEED IT- and only by DR H! He has perfected a technique that is different than any other surgeon.
A friend went to Johns Hopkins for Chiari surgery at the same time as me and he is MUCH MUCH WORSE than before and has not returned to work.
Finally
Sorry for the long post, but I hope it helps you and others making a decision to have a scary surgery. You are in the BEST hands with Dr. H and if you need this surgery and don't get it, you could end up unable to walk or worse.
Good luck and I hope you get better