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.
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hunter5582
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I am so pleased that you have got through surgery OK. I had been wondering how things were for you as I remember reading some time ago that you had a brain tumour in addition to PV. I do hope that the pathology reports are favourable and you heal well from this.
The staples are out of my head (horray!!) and pathology report is in. They are not 100% sure, but it is likely a pilocytic astrocytoma. this is a grade 1 tumor associated with my Neurofibromatosis type 1. While rare overall even for NF1, it is the most common type of CNS tumor associated with NF1, but usually found in childhood. Very rare to find one in a 63 year old. Just my luck - I have a rare form of blood cancer then have a double rare type of brain tumor to boot. The good news is that the only follow up needed is to monitor with MRIs. No chemo - no radiation needed. A few trips through the tube every year beats the heck out of chemo/radiation!! I am going to all it a win. The tumor is gone and I am healing up fine.
I sure have learned a lot in the last year about MPNs. NF1, brain tumors, IJAK2 and inflammatory cytokines, and so on. I think the most important things I have learned is to maintain a positive attitude, to educate and advocate for myself, to get support from family and friends, and to rely on the resources like this forum. The other folks here in this forum have been a terrific support. I sure am glad I found y'all.
So pleased you’re through surgery and sending E hugs. Will certainly have a look at Qi Gong. I do believe stress is an evil caused by so many things: our ailments, family, work, etc and badly affects our health and the way we perceive or think about things has a direct bearing on our health. Thank you and wish you a speedy and total recovery. Kindest regards Aime x😺😺
Thanks. Please do look into Qigong. It is actually a very broad term that covers a lot of things. I started with the 10 forms and the Six Healing Sounds. I will be moving on to include the Eight pieces of Brocade and Tai Ji Quan 24 forms. (The latter is also commonly called Tai Chi). The benefits are physical, mental and spiritual (The Three Treasures - Jing, Qi, and Shen). The underlying philosophy is just as important as the physical forms. All the best to you.
Hi - Who was your neurosurgeon? I ask as I have been treated at Johns Hopkins as well (also my brother is a retired neurosurgeon). And I may have mis-read, but what is PVP? I have polycythemia vera, but not sure what PVP is. Hope to hear from you as Johns Hopkins is always an option for me.
PVP would be a typo for PV. Dr. Jon Weingart was the neurosurgeon. Great doc. In fact, the entire Johns Hopkins neurology team has been fantastic. The techs, nurses, docs and other providers have all been truly outstanding. FYI - Dr. Jerry Spivak is the MPN-Expert hematologist who has become a consultant on my case for the PV treatment planning. I I have a good local hematologist who provides my on-going care, but I am only his 5th MPN/2nd PV patient in a 20+ year career. Dr. Spivak takes a different approach in that he looks at the individual profile of each MPN patient to determine appropriate treatment. He does not rely on the "standard protocol." He has an experience base with MPNs that few docs can match. His input has been really helpful.
I’m glad the operation was successful. I wish you the very best. You good calming and giving yourself time for healing. You still young I’m older that you. Q1 I’ve not heard about this. I have some stress would try it too.
Qi Gong is a broad term that includes a number of different things. Modern Tai Chi is one form of Qi Gong (aka Gigong). I have started with the 10 forms and the Six Healing Sounds. Together, even this small beginning has speeded my recovery and made a stressful time easier to bear. It is important to find a good teacher (Sifu) who can teach both the physical forms and the underlying philosophy of Qi Gong. Here are a couple of links to learn a bit more.
Just reading your posts Hunter and I am so thankful to hear you came through your surgery so well and it was a grade 1 tumor and no chemo required! Wow.....I can not imagine what the last 2 months have been like for you. You are a very positive and knowledgable person, and thank you for all your encouragement and words of wisdom to all of us on this forum!! Wishing you continuing good days and I am definitely going to check out Qi Gong.
So pleased to hear you got through all of this & hope you’re still well. I’ve also been diagnosed with a benign brain tumour & a few months ago diagnosed with Essential Thrombosis. So super scared to have craniotomy with added complexity of an MPN. Reassuring to know I’m not alone
Just having one of the two is scary enough. Having them both most certainly adds a bit more interest to one's life. That would be "interest" as in the old Chinese curse "May you have an interesting life." I most certainly understand what you are feeling right now.
I am doing quite well at this point. the tumor turned out to be a Grade 1 Pilocytic Astrocytoma that was negative for all 27 cancer genes. Quite fortunate in that I would be at higher risk for the malignant form of this tumor (Grade 3 Anaplastic PA). I now know more about the tumor, the surgery, and the recovery. I have fully recovered from the surgery and at this point there is not evidence of recurrence. Due to the other condition I have (Neurofibromatosis type 1), there is significantly increased risk of recurrence, so I will be monitored routinely with MRI for the rest of my life. I will stay aware, but frankly do no worry about it.
Recovery from a craniotomy varies widely. It depende a lot on where the tumor is. Mine was in the occipital lobe. The docs were able to get to the tumor by elevating the brain and cutting through the parenchyma where it was being distorted by the tumor. I did have some visual side effects that lasted about 6 weeks. Once my brain recovered, I have been fine. I am experiencing some convergence insufficiency, but that appears to be related to developing cataracts rather than the surgery.
I did, of course, have concerns about the surgery and recovery, but everything went quite well. I did not need any pain-killers post surgically other than Acetaminophen. They only kept me in the hospital for a couple of days before discharging me. A week of steroids to control swelling and a month of anti-seizure meds for prophylaxis and all was well.
ET is something that you have to pay attention to when having a major surgery. You can anticipate some degree of reactive thrombocytosis. How much depends on your own unique form of ET and how much bleeding/inflammation/tissue damage occurs. The ET may increase your risk for thrombosis or conversely hemorrhage during and after the surgery. That is why it is so important to have a MPN Specialist (not just a regular hematologist) to consult on your case. A highly skilled neurosurgeon is also essential. Ideally, having the surgery done at a major hospital center that has a MPN clinic is ideal.
I am truly blessed to have Johns Hopkins a couple of hours away from where I live. They have a MPN Clinic, a NF Clinic, and a major neurosurgery unit as well. My surgeon was the Director of the Neurosurgery unit, I could not ask for a more expert team. The quality of care I received at Johns Hopkins was outstanding. Would also note that the nurses there are fabulous, The Medical Administrative Assistants are also really terrific. In all, they are an amazing care team.
The best advice I could give you is to do whatever you have to do to find a care team that can comprehensively address all of your needs. It is worth travelling to make this happen.
All the best to you. Do let us know how things go.
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