So finally we have a date for procedures to start on 9/2/09. Our surgeon has conferred with his colleagues, he has taken MRIs, CT scans to conferences to discuss with experts. What we understand is that open surgery is not possible because of the location of the AVM. So they have planned on embolization to block of the AVM to reduce risk of re-bleeding. Then radio therapy to start the process to thicken the AVM thereafter. The procedure will take place at Children's Memorial Hospital in Chicago, with the radio therapy at Northwestern Hospital. Although the radio therapy session is not confirmed and we need more assurance that this is necessary right away.
http://www.neurosurgery.pitt.edu/endovascular/treatments/avm.html
http://www.irsa.org/avms.html
Sunday, August 23, 2009
Saturday, August 1, 2009
Aysha - 8/02/09
There is still no schedule for the surgery. Doctors are evaluating the recent MRI and angiogram. After the angiogram, the vascular surgeon gave Lia his perspective. He stated that his view is that embolization is the route to take and IF possible open surgery. We have an appointment with the neurologist with specialization in epilepsy on 8/8/09.
Aysha is doing OK, she did mention headache two nights ago when going to bed. It did not persist for long. We were told if this happens again and persists to take her to Children's' Memorial emergency room. I have not seen any improvement in the vision problems and often mentions double vision, especially when she is looking in angles at things.
Aysha is doing OK, she did mention headache two nights ago when going to bed. It did not persist for long. We were told if this happens again and persists to take her to Children's' Memorial emergency room. I have not seen any improvement in the vision problems and often mentions double vision, especially when she is looking in angles at things.
Tuesday, July 7, 2009
Aysha - 7/07/09
Aysha had her appointment with the neuro-opthamologist. They stated that she did have some damage to her optic nerve. But apparently its still functioning well enough that her vision has not degraded much at all. The issues she is having is not able to look at higher areas in her line of vision without tilting her head up. Hopefully this improves with time. There are other problems but thats the main one right now.
On 7/8/09 she will have the arteriogram at 23o PM in Childrens Hospital in Chicago. She is supposed to be fully sedated for the procedure. And possible hospital stay after that.
On 7/8/09 she will have the arteriogram at 23o PM in Childrens Hospital in Chicago. She is supposed to be fully sedated for the procedure. And possible hospital stay after that.
Wednesday, July 1, 2009
Aysha - 7/01/09
We received a call from the nuerosurgeon today. Dr. Alden talked to his colleagues. He mentioned there is another possibility now, open surgery to totally remove the AVM is an option now. He stated the gamma knife(radio surgery) is effective maybe up to 80% after a 3 year period, after that another session may be needed. But of course, chances of re-bleeding are still there in the meantime, as it is now. So, MRI/angiogram/ct scans are being scheduled for the next few weeks. And choices to make thereafter on the path to take.
Tuesday, June 16, 2009
Aysha - 6/16/09
No real updates yet. We had met with Dr. Alden on 5/27 and he said call back in two weeks. He was going to meet with his colleagues, discuss this case and propose the plan of action. He was to speak to Dr. Hunt Batjer, who is the chairperson of the neurology department at Northwestern.
Aysha's is already done with Kindergarten. She has also completed her OT/PT at RIC. We have to make appointment with neuro-ophthalmology to check on the occasional double vision and squinting problems she is having.
Aysha's is already done with Kindergarten. She has also completed her OT/PT at RIC. We have to make appointment with neuro-ophthalmology to check on the occasional double vision and squinting problems she is having.
Wednesday, May 27, 2009
Aysha - 5/27/09
Aysha met with Dr. Alden at Children's Hospital today. He will look at the CT/MRI CDs in detail. He will also confer with other more experienced surgeons to discuss the best plan of action. She will also have to meet with neuro-opthomologist to check into eye/pupil movement issues.
Aysha will attend a few hours of school a day to finish of her kindergarten year.
Aysha will attend a few hours of school a day to finish of her kindergarten year.
Sunday, May 17, 2009
Aysha - 5/17/09
We want to give thanks from the bottom of our hearts to all our family, friends, colleagues for Duas, prayers, thoughts, concerns, visits, calls for Aysha. All of your assistance in every way is greatly appreciated. Thank you.
Aysha is progressing well. Doctors decided that she didn't need speech therapy any more, so she has two times a week now in OT/PT. To be clear, she has full mobility albeit some slight unsteadiness at times. Doctors have told her to 'keep both feet on the ground' so to keep her activity limited in the near future.
Aysha has an appointment with the neurosurgeon on May 27th to start planning on the surgery. Dr. Alden is associated with Northwestern University and Children's Memorial Hospital. We will have to understand the pros/cons of embolization and radiotherapy.
Aysha is progressing well. Doctors decided that she didn't need speech therapy any more, so she has two times a week now in OT/PT. To be clear, she has full mobility albeit some slight unsteadiness at times. Doctors have told her to 'keep both feet on the ground' so to keep her activity limited in the near future.
Aysha has an appointment with the neurosurgeon on May 27th to start planning on the surgery. Dr. Alden is associated with Northwestern University and Children's Memorial Hospital. We will have to understand the pros/cons of embolization and radiotherapy.
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