On Monday we met with Morgan's neurosurgeon (Dr Petronio) at Children's in St Paul, not exactly what I wanted to spend my extra day of a long weekend doing but happy to get in without missing school & work! We spoke at length about the pros/cons of Selective Dorsal Rhizotomy (SDR) surgery, the risks, checking her shunts are working, etc.
He is highly recommending this surgery also. She is an ideal candidate (fits all of the candidate criteria - age, medical history, level II spastic cerebral palsy, etc) and more importantly he weighed in on the long term effects of spasticity/CP if she did not have the surgery. If we did not proceed she would experience more muscle stiffness and deterioration over time and especially during adolescence. Her muscles in her leg wouldn't keep up with bone growth which results in muscles that are shorter than they should be and impacts joint range of motion and causes bone deformities (likely resulting in a bone surgery down the road). It also becomes more painful over time as a result of changes in joint position and deformities and most likely her walking would get worse over time - she would walk more crouched and more up on her toe or feet turned in.
Dr Petronio has done over five hundred of these surgeries (and goes to Jamaica every year to do them with Dr Gormley who we saw at Gillette's) and probably the most experienced around which is definitely reassuring! There are different levels of this surgery and he does perform single level laminectomy (vs multi-level) which is a little less invasive and smaller scar. The surgery takes about 3 hours and typical recovery time is 3-5 days with total of 4 to 6 week inpatient stay for rehab. We spoke about checking her shunts flow/pressures per the recommendation of Gillette's neurosurgeon and he has never experienced CSF leakage through incision site but does agree it is best to go into the surgery understanding this. We have known from scans for a couple of years the shunt in her fourth ventricle is not actually placed in the ventricle so not convinced it is functioning properly but will leave it alone unless she starts displaying shunt malfunction symptoms. There are risks of course (as with any surgery) which he reviewed, the most serious, but rare, being paralysis.
I have also spoken & messaged with a few different families who have undergone SDR and their feedback is very positive, one said "it was the best choice we have ever made". I have learned a lot from these people regarding the procedure, the recovery and inpatient rehab time and schedules following and it was helpful to learn from their experiences to know what questions to ask! There are facebook groups also I have joined and it is very encouraging to watch the videos of these kids and see the outcomes.
The short of all of this is that we have decided to move forward and I scheduled the surgery yesterday for Wednesday, March 13th at Gillette's in St Paul.
Lots to do before this. Just prior to the surgery she needs a full MRI of brain and spinal cord and we decided to do this sedated so that they can tap her shunts (insert needle into her shunt reservoirs to extract CSF and measure pressure) at the same time, we have this scheduled for Thurs, Mar 7th. She also needs pre-op exam and we have a lot of planning for missed school, work and schedules. Gillette's has already been very helpful and sending more information as well and will schedule tour and prep appointment the day before.
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
