Aysha - 11/03/10

Aysha has started physical therapy again. Her left side is still weak and not functioning normally. She has extreme difficulty using her left hand and will not use it on her own. Most tasks she is doing one handed. Her left leg is also weak, we are doing regular exercises to keep it as strong as possible. She still has a limp and the knee hyper-extends, she will be fitted for a brace tomorrow.
She is attending school, she goes to class with a walker to assist her.

Aysha - 09/29/10

Aysha had another CT scan last week. The swelling has not gone down significantly. The swelling is where the AVM has been treated with radiation and is the cause of the swelling. The neuro-surgeon is hoping the radiation is working. This area of the brain controls her left leg. She is having extreme trouble using the left leg normally. Also she has trouble using her left arm. At this time we don't know if this is temporary or not. The steroids to reduce the swelling has been tapered off. No further steroids are being planned.

Aysha - 09/08/10

Aysha will have another CT scan tomorrow (9/9/10). She has been limping a lot more lately. Her left side seems weaker. Will see what the doctor says after reviewing the scan. Nothing else to report now. We will also check if physical therapy needs to be increased.

Update: Aysha is being admitted now. CT scan shows edema in the brain. MRI, angiogram is planned. No further information at this time.

The diagnosis is that the swelling is probably from the radio therapy taking effect. They will start steroids to treat that. The thought is the swelling is in the area of the brain that controls her left leg/side. MRI will be scheduled for tomorrow.

Steroids have started for Aysha. It will continue for 10 days. MRI scheduled at 2PM 9/10/10. After review of MRI, release planned later in the evening.

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

Aysha - 01/21/10

Aysha has an appointment with nuerosurgery doctors at the University of Chicago on 1/27/10. After her last procedure, surgeons found another one centimeter AVM next to the first one. This AVM is now supplying another vessel. Dr. Shaibani at CMH is now recommending the radio surgery procedure and soon thereafter another embolization for the new AVM. These procedures are being planned at the UC Hospitals.

Aysha - 01/6/10

Aysha had an angiogram today. Surgeons found growth of the AVM. At this point we don't have information on how to treat this growth. Doctor stated that this probably can't be embolized as before. Not sure what the next step is at this point.