What now....

Linear Accelerometer was applied to my AVM on Thursday, August 7, 2008 - instead of the Gamma Knife; seems they are equivalent.

The procedure is less intrusive than embolization and, from what I heard from all the pre-op docs, side effects will take longer to appear. Any impact could be seen in 6 to 8 weeks- and could be similar to the ones I had with embolization or worse- as the irritation of the brain could be more intense.

Follow up of the AVM will be done every 6 months using MRI scans- but any final determination regarding the status of the AVM will take about 2 years.

Life goes on - I am now focused on Big Bend in November and my appointment with the ENT doctor on Monday, August 11th to see what is the mass they found on my right sinus cavity.

One day at a time....

Treatment

December 17Th- the 1st embolization was done, after a long wait for schedule availability.

Procedure went well - a new embolization will be required.

Surgery happened in the morning, was awake by noon and released from the hospital the following morning.

Most uncomfortable part was the urinary catheter and constipation 24 hours after the surgery.

End of January had 3 of 4 events of numbness of left foot and left hand (no loss of strength and some loss of coordination); ended up in emergency room and after Cat Scan, MRI and EEG, no specific cause was found. Was prescribed Kepra- anti convulsant drug, at a low dose. As of mid march, the numbness had  not recurred.

AVM Update - Challenge of first opinion

Background
After the second opinion, which agreed with the diagnosis but differed with the treatment, the question was the need for embolization prior to Gamma Knife Radiation.
Why embolization
According to Dr Rossenwasser, size is important (at least in treating AVM's).
My AVM is small (~3 in). Ther are only two 'cures' for AVM- Surgery and Radiation Therapy (Gamma Knife). What they know is that there is a minimum radiation required to successfully destroy the AVM. The larger the AVM the additional radiation required. It is more than the size - it is about the volume and the topology of the AVM. The borders of the AVM need to radiated with enough strength to be effective.
Effectiveness of the radiation therapy is calculated by the volume to be irradiated- in my case the estimate is that given the size of my AVM I would have 70-80% success probability with a single Gamma Knife radiation.
Embolization will reduce the volume of the AVM. 6-8 weeks after embolization, radiation would be applied. Embolization reduces the size of the AVM and makes the success probability higher.
Options are to do 2 radiation procedures, spread over 12 months, in order to guarantee a much higher rate of success of the procedure.
Dr Rossenwasser was involved in the review of the paper that questioned the effectiveness of embolization prior to radiation. The way I understood his observation on this paper is that the results had to do with the strength of the radiation used in the comparative studies- very low to measure the effectiveness of radiation.

Risks

Timing
October is the first window for embolization; radiation would most probably happen after my return from Australia.
Embolization is an overnight stay at the hospital (and, based on my prior experience with catheterization, 1 or 2 days at home).
Next Steps
Discuss with Ken
Wait for Rossenwasser schedule

AVM Update

The history
February, got some low level headeaches and felt somewhat off balance.
April, visit Dr Morrios (my excellent GP) who, after a neurological exams can't find anything- suggests a Brain MRI
May, MRI results come back- Dr Morris suggest that I go to the best guy in Philadelphia - Dr Rossenwasser to look at my AVM (Arterial Venous Malformation).
Mid June(20): Angiogram performed. I was told by Dr Rossenwassers nurse that an embolization (to reduce the flow of blood to the AVM) will be made and the Radiation (Gamma Knife) will be applied.
AVM
AVM is a congenital malformation of the Arteries and Veins, can happen anywhere, but in the brain it is delicate because of the risk of bleeding. Not genetic in nature. My case, after the MRI review and an Angiogram, is located in a low risk area of the brain - no motor or speech areas- more of the thinking area. In normal cases, arteries will take high pressure blood with oxigen to the brain and the capilaries will distrubute the blood through the brain; through the capillaries the blood pressure will decrease and oxigen content will drop. With AVM, there is a 'nidus' of veins that 'shunt' the arterial blood to the vein, at high pressure and fully oxigenated; the risk is that the vein (or the 'nidus') will rupture because of the high blood pressure.

Last update and next steps
July 16: Visited Dr R. Solomon in Columbia Presbeterian- Ken and mami came with me. Dr A\olomon agrees with the assessment that this is a small AVM (smaller than indicated in the Angiogram) and that the radiation option, given my age and the size and location of the AVM, is the best option. No concerns regarding inmediate bleeding risks (no aneurisms). His recommendation is radiation WITHOUT embolization. His argument is that embolization will 'hide' the full extent of the AVM making it difficult to plan the radiation therapy, the risk of the catherization for the embolization and the fact that the glue used will 'protect' part of the AVM from radiation. He stated that, in his experience, embolization + radiation, had lower success rates than pure radiation.
On August 14 I will meet with Dr Rossenwassser. If the difference of opinion is not resolved, a we will need a third opinion. I hope we do not get into this.