Aysha - 08/07/10

There has been no tests or monitoring since last blog post. Aysha is being tapered of the clonazepam . By the time her school starts on August 24th she will have twice daily of the medication in half doses. Her weakness on her left leg is easily noticeable. We probably need to increase the physical therapy for that, will have to ask the doctors. Also the vision issues are noticeable, in that she has a tougher time to keep eye contact and focus.
I was reading an article in the Tribune about CT scans. It's about the amount of radiation one receives for one CT scan. One scan of the the head is equivalent to 115 X-rays. Aysha has received approximately 40 CT scans in the past year and a half. Add the actual radio therapy to that total also.

Link to study
FDA

Aysha - 06/09/10

Aysha had an MRI today. As per the neurosurgeon, the MRI did not show any improvement of the AVM and also there was not any further growth neither. So its a matter of continuing to keep monitoring. Next MRI is planned for March.
Aysha has an EEG scheduled for next week, after that the plan is to taper of the medication she is on. The medication is to keep gelastic seizures from occurring. Therefore the tapering will have go slowly.

Aysha - 05/01/10

Aysha's results for the CT scan did not show anything alarming. The doctors stated they did not see any swelling or bleeds.
Aysha also had appointments with the neurologist at Childrens' Memorial and neuro-ophthalmologist. The plan is for Aysha to be tapered off the Clonozipam medication after school is done for the year. The side-effect of this drug is tiredness and slower processing of information. This is also something school nurse and teacher have mentioned about her.
Opthalmologist's test showed gradual improvement of her convergence vision problems. She will have to continue doing her eye exercises along with the other physical therapies for muscle strengthening.

Aysha - 04/21/10

Aysha has a CT scan tomorrow. School nurse noticed some twitching of her eye while she was reading. The urgency was from concerns by neurosurgeons. An appointment with the nuero-ophthalmologist was moved up to next week as well. Her vision has not really improved at all, in particular is focusing on things that are closer to her. She has problems with convergence.
She will also have to start physical therapy as her left side is noticeably weaker. This is causing various different muscles to not be developed properly.

Aysha - 03/14/10

Aysha will have MRI/CT scans in 3 months again to continue to monitor the still existing AVM. There seems to be some confusion about the status of her AVM from family and friends. So, the latest procedure done is trying to remove the last part of the AVM. But this process of using radiation takes 2/3 years, meanwhile the 1cm AVM is still there with risk of bleed. Since the best option is not available to us (location is inaccessible), which would be to remove the whole AVM at once, we are left with embolization and radio therapy.

Aysha - 03/10/10

Aysha's radiation surgery went well as per surgeon. Doctors stated they were able to treat the target area they intended. She was sedated early in the morning and continued all day. She had a frame (halo type device) drilled to her head to keep it motionless during MRI, CT scan and actual radio therapy.
She is in PICU currently, the sedation is slowly wearing off. She has slight fever, vomited a little bit and complained of pain in back of head. Doctors are checking, but these are expected side effects. She has been communicating well and in good spirits.

Aysha - 02/18/10

Update: Surgery has been scheduled for 3/10/10.

Its been awhile since last post. Aysha had another appointment yesterday with the neurosurgery doctors. The doctors met with all their colleagues and reviewed her case. The options they are suggesting is radio surgery. In actuality, options are limited given the situation. Another embolization is highly risky if not impossible now. Even radio surgery has too many negatives for a parent to think about. This procedure will aim to remove the remaining AVM in 1-4 year period. Of course, radiation is being introduced to the brain.... chances of tumors, etc. The site of the AVM can have adverse effect on her vision and left side mobility, which has already shown deterioration.
Surgery is being planned mid March. Please pray for her.

en.wikipedia.org/wiki/Gamma_knife
http://www.gammaknife.org/lgk_patients_stream.wmv
http://www.uchospitals.edu/online-library/content=P08476
http://www.irsa.org/avms.html