For all of us with MPNs, we face many challenges and unknowns. Sometimes we have related and unrelated medical issues that complicate things. Dealing with a variety of specialists, many of whom have no idea how the MPN will impact the treatment hey are providing is really a big problem. In the last year and a half I have had multiple surgeries. A Green Laser PVP that triggered reactive thrombocytosis and other issues - worsened by how the doc performed the procedure without any thought to the MPN. I had to have a heart surgery (catheter ablation) to deal with paroxysmal atrial tachycardia that was both successful and handled very well by a doc who did consider the MPN in his treatment for me. Most recently, I had to have a hemorrhagic brain tumor removed. The treatment team at Johns Hopkins Hospital included the Director of Neurosurgery, the Director of the MPN Clinic, The Director of the Neurofibromatosis Clinic , and my regular care doctors. It is hard to overstate what a profound difference it makes when you have the right team providing your care and when their practice is informed by understanding your unique presentation of an MPN.
I had the tumor resection on June 17. It was an open brain procedure (craniotomy) where they created a bone flap, exposed the brain and went in to get the tumor. I am fortunate in that they were able to go in underneath the brain to get to the tumor. They did not have to cut through the parenchyma to get at the tumor, which was periventricular near the right occipital horn. The presentation was a bit more complex in that the tumor wall was enmeshed with optic nerve fibers running along the wall of the ventricle. Therefor, they had to leave some of the tumor wall behind to protect the optic nerves. They still do not know what kind of tumor this is. Other than to say it did not look "aggressive" (e.g. is not a glioblastoma), the word is we will just have to wait for pathology to complete the assessment. Should find something out next week when I see the neurosurgeon. It is likely some form of lower grade malignant glioma. I suspect it is a grade 2 tumor based one everything we know, but time will tell. I have a coexisting genetic condition , Neurofibromatosis type 1 that predisposes me to certain types of CNS tumors. Pilocytic Astrocytoma and Pleomorphic Xanthoastrocytoma are two NF1-related tumor types on the list of possibles. One of the neurology teams thinks it looks more like a PXA than anything else, but that is just an educated guess. Hopefully it will end up being something that does not require follow up chemotherapy or radiation.
I am recovering well for a 63 year old guy who just had his head cut open and a tumor sucked out. They discharged me two days after the surgery and I went home with family to recover. The large skin flap that is stapled together hurts a bit, but I refused all opiates (detest them) and am fine with just Tylenol. There are some minor visual side effects, but they are expected to be temporary. I tire very easily, but seem to be gradually getting my energy levels back up. I am not pushing it, am abiding by the activity restrictions (though they chafe), and am just going to give myself time to heal and recover. One thing that has made a big difference is that prior to surgery I started practicing Qi Gong. I have a terrific Sifu (teacher) who started me out with some very gentle basics that are making a big difference. The 10 forms and the Six Healing Sounds are having both physical and mental/emotional benefits. The Qi Gong is promoting healing and the mindfulness that comes from it's practice is calming at a time that would otherwise be very stressful.
We are all dealing with conditions that can be difficult, stressful and confusing at times. It is really a blessing to have a group pf people who understand what we are going through and can offer support, information and a shoulder to lean on. We are indeed stronger together. Thank you and all the best to all of you.
