What to Expect With Chiari Surgery
In people with severe symptoms or with a syrinx, surgery is advisable. The goals of surgery are to stop or control the progression of symptoms caused by herniation of the cerebellar tonsils, and relieve compression of the brain stem.
In patients with a syrinx, the goal of surgery is to prevent or control progression. Symptoms related to the obstruction of CSF should decrease as flow normalizes.
Posterior fossa decompression This is the main surgery that most Chiarians usually have. It is a surgical procedure that removes bone at the back of the skull and spine to widen the space for the tonsils and brain stem.
The surgeon opens the dura ( brain covering) overlying the tonsils and sews a patch to expand the CSF space.
Spinal fusion I had this done as well. I was fused from my Occipital bones down to my C4 vertebra. It may be performed in addition to decompression surgery in certain patients with spine instability. The neck area of the spine may be unstable due to scoliosis, Ehler-Danlos syndrome, or another bone abnormality. Rods and screws are inserted to structurally reinforce the skull and neck vertebrae.
Shunting is used to reroute CSF. The shunt includes a flexible tube with a 1-way valve that directs the fluid out in the desired direction. For a syrinx in the spinal cord, one end of the tubing is placed in the syrinx. The other end is placed outside the spinal cord. For hydrocephalus, one end of the tubing is place in the ventricle of the brain. The other end is placed in the abdomen (called a ventriculoperitoneal shunt). A shunt remains inside the body after surgery. However, shunts pose risks and often become clogged or dislodge. Repeated surgeries may be necessary.
Transoral decompression is a surgical procedure to treat basilar invagination. The surgery is performed through the mouth, to the back of the throat, to remove an abnormal odontoid bone (C2 vertebra). This is a surgery I will be having done in the future.
What happens before surgery?
During the office visit, the neurosurgeon will explain the procedure, its risks and benefits, and answer any questions. Next, you will sign consent forms and complete paperwork to inform the surgeon about your medical history.
You will be scheduled for pre surgical tests several days before surgery.
Morning of surgery
Shower using antibacterial soap. Dress in freshly washed, loose-fitting clothing.
Wear flat-heeled shoes with closed backs.
If you have instructions to take regular medication the morning of surgery, do so with small sips of water.
Remove make-up, hairpins, contacts, body piercings, nail polish, etc.
Leave all valuables and jewelry at home
Bring a list of medications with dosages and the times of day usually taken.
Bring a list of allergies to medication or foods.
An anesthesiologist will talk with you to explain the effects of anesthesia and its risks.
Ask your doctor about anything else if you are unsure.
*What happens during surgery?
Step 1: prepare the patient
You will lie on the operating table and be given anesthesia. Once asleep, your head will be placed in a 3-pin skull-fixation device, which attaches to the table and holds your head in position during surgery. A strip of hair is shaved along the planned incision. The scalp is prepped with an antiseptic.
Step 2: make a skin incision
A skin incision is made down the middle through the neck muscles so that the surgeon can see the skull and top of the spine. The skin and muscles are lifted off the bone and folded back.
Step 3: remove bone
The surgeon removes a small section of skull at the back of your head. In some cases the bony arch of the C1 vertebra may be removed. I had this done as well. These steps expose the protective covering of the brain and spinal cord. Bone removal relieves compression of the tonsils.
Step 4: open the dura
Next, the surgeon opens the dura to view the tonsils and cisterna magna. Some surgeons perform a Doppler ultrasound study during surgery to determine if opening the dura is necessary. Sometimes bone removal alone may restore normal CSF flow.
Step 5: reduce the tonsils
Depending on the size of herniation, the stretched and damaged tonsils may be shrunk with electrocautery. This shrinkage ensures that there is no blockage of CSF flow out of the 4th ventricle.
Step 6: attach dura patch
A patch of synthetic material or the patient’s pericranium (a piece of deep scalp tissue just outside the skull) is sutured into place. This patch enlarges the dura opening and the space around the tonsils. The suture line is covered with a dural sealant to prevent CSF leak
Step 7: close the incision
The neck muscles and skin are sutured together. A dressing is placed over the incision.
What happens after surgery?
You will wake up in the recovery area. Your throat may feel sore from the tube inserted to assist your breathing during surgery. Blood pressure, heart rate, and respiration will be monitored. If you feel nausea or headache after surgery, medication can be given. When your condition stabilizes, you will be discharged in the care of your family or a caregiver, usually 2-5 days. I was in the hospital 5 days. Every person is different. Some people have more complications than others. My surgery was only supposed to be 8 hours, and it turned into 14 hours.
- After surgery, pain is managed with narcotic medication. Because narcotic pain pills are addictive, they are used for a limited period
- Regular use of narcotics can cause constipation, so drink lots of water and eat high fiber foods. Stool softeners and laxatives may be bought over-the-counter.
- Ice packs for 20 minutes can help relieve neck and shoulder pain and muscle spasms. Muscle relaxants may be prescribed. I couldn’t use ice packs with my fusion it was too painful.
Avoid activities that increase pressure in the head:
Bending over, with head low
Straining / pushing during a bowel movement
Do not drive after surgery until discussed with your surgeon and avoid sitting for long periods.
Do not lift anything heavier than 5 pounds (e.g., gallon of milk), including children.
Housework and yard-work are not permitted until the first follow-up office visit. Avoid gardening, mowing, vacuuming and loading / unloading the dishwasher, washer, or dryer.
Do not drink alcoholic beverages while on pain medicine.
Your doctor will advise you of any other restrictions.
Shower and wash hair with mild shampoo after surgery unless otherwise directed by your surgeon. Avoid water directly on the incision or rubbing the incision dry. No tub baths, hot tubs, or swimming pools. I wasn’t able to wash my hair after surgery. My pain wasn’t controlled well, and I ended up having to shave my head.
Sutures or staples, if used, will need to be removed. Ask your surgeon or call the office to find out when.
When to Call Your Doctor
Fluid may accumulate under the skin around the incision. A visible swelling that is soft and squishy may be a sign of cerebrospinal fluid leakage. A clear sticky fluid may leak from the incision. Call the surgeon should any drainage occur.
If you experience any of the following:
A temperature that exceeds 101º F
An incision that shows signs of infection, such as redness, swelling, pain, or drainage.
Decreased alertness, increased drowsiness, weakness of arms or legs, increased headaches, vomiting, or severe neck pain that prevents lowering your chin toward the chest.
If something doesn’t feel right, call your surgeon. If you pain is out of control, go to the ER.
Before you leave the hospital, appointments with the neurosurgeon will be scheduled 10 to 14 days after surgery to remove your sutures and check your recovery. Recovery from the actual surgery varies from 4 to 6 weeks, depending on your general health. After surgery, you can expect headache and neck pain from the incision that may last several weeks, to a few months to years. Every person is different.
Organizations, Message Boards, Resources
The University of Chicago Medicine
Columbia University Medical Center – Columbia Neurosurgeons
Treating both pediatric and adult chiari malformation.
Conquer Chiari Pediatric
Columbia University Medical Center – Neurosurgeons of New Jersey
Treating both pediatric and adult chiari malformation.
American Syringomyelia Alliance Project
Chiari & Syringomyelia Foundation
Mayfield Chiari Center
The Chiari Institute
Associazione Italiana Siringomielia e Arnold Chiari – AISMAC
Canadian Syringomyelia Network
Chiari Connection International
Chiari Support UK
British Syringomyelia & Chiari Society
United Kingdom Arnold Chiari and Syringomyelia Association
World Arnold Chiari Malformation Association
AZ Syringo & Chiari Support Group
Carrie’s Chiari Connection
Chris’s Chiari Blog (UK)
Life with Chiari
Many organizations provide free or reduced travel assistance to those in need.
- Air Care Alliance
- Angel Flight
- Children’s Flight of Hope
- National Patient Travel Center
- Hope Flight Foundation