I have not started tapering off yet. I am interested in how others have managed with it. I am considering tapering off.
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I had one removed in August 2009 and still have issues. Mine was on the left side near the frontal lobe. There were parts of the meningioma that could not be removed because of where it was. Because of the location I have lost nearly all of my executive functions. I have also lost most of my long term memory and short term memory. It is extremely frustrating to not be able to remember how to get to places I go on a regular basis. Many times I can get to the end of my driveway and then my mind goes blank. Thank goodness for GPS. My inability to deal with multiple tasks and retain new information forced me to quit a lucrative career and apply for disability. Now I am basically confined to home and local areas that I can get to and back home without much trouble.
I had no symptoms with my meninigioma at all. I fell and hit my head and went to the ER because I passed out. Xrays showed I didn't break anything but showed a rather large tumor. The neurosurgeon said that had I waited a couple more weeks I would have had a stoke from which I would not have recovered.
During follow up MRI's another meningioma was found in the top of the brain in the frontal lobe. So far it is not growing and the neurosurgeon says that should it start growing he will use laser surgery to remove it. I definitely don't want to go through the surgery again. I still have pain from it and my skull has not ever fully closed. My skull was taken apart in three or four different sections trying to reach all the tenticles of the tumor.
I wish you well with your recovery. Pay close attention to anything that you feel is not normal and discuss it with your doctor. If you aren't satisfied with the answers your doctor gives you demand further testing. I had to go to a neurophychologist to learn that I had mild cognitive impairment because of the tumor.
Yes, I have talked with his doctors about his changes. I have told them he is depressed. I have told him he is depressed and we have discussed the signs/symptoms of depression. I have serious depression and know it well. His PCP asked him if he felt down sometimes to which hubby affirmed that he did. The doctor's response was, "Well, we all get that way from time to time. It comes with getting older." When hubby told me this I nearly exploded but didn't as he trusts this doctor and my speaking against him doesn't help matters. I on the other hand don't trust this doctor as far as I can throw him.
My nephew has now had his fourth kidney transplant. His personality changed with each one. The first donor was a family member and had the least change. The others were cadaver kidneys. The third donor had high blood pressure and took medication for it. My nephew had to take BP medication because the kidney was accustomed to it. The doctors are all aware of these changes in the recipients but the information is not shared with the family or general public. It is up to us to do our research and learn as much as we can.
I had always heard that patients who undergo open heart surgery experience a change in their personality as well. I think it is more than just those who have open heart surgery that are affected. My husband has had angioplasty to insert two stents in a blocked artery and I saw a change in him. He later had to have a defibrillator installed and I have noticed even bigger changes and not for the good. He has changed to someone who has little or no interest in anything including personal hygiene. He is now 72 years old and refuses to do anything that will improve his ability to participate in things we had planned to do during retirement. I am 64 and although I have physical limitations that make me a little slower I am still doing what I can to maintain my mobility.
So sorry to hear about your son's ordeal. I have a sister who has gone through radiation and chemo or two different cancer diagnoses this year. The first one she drove herself to and from the treatments and then went to work or went home depending on the time of day. She refused all help from me but allowed a 'friend' to assist her. For the second cancer she was in much more pain and lost her appetite. She drank Boost and lots of water and juice. Her doctors were not concerned as this is normal with chemo and radiation. The second time she had a port implanted which was used for the chemo. She was fitted with a bag that had the chemo in it and she wore this bag 24/7 for five days. She would get it removed for the weekend and then on Monday start again. She did this for three weeks on top of 30 plus radiation treatments. Still she refused all help from me.
I know it is hard but you must ease off on your son. He is 54 years old and capable of making his own decisions. I can imagine his throat is extremely sore and will be for a while. Let him know you are there if he needs you but don't nag him. Be thankful that the Pet scan showed no cells. It sounds like he knew you to a T. Let him tell you in his time and his way about his cancer and treatments. He sounds like a determined person. My oldest son is 41, unmarried and lives three hours away. I worry about him but don't let him know it. If he needs me, he will let me know which he has done more than once.
My mother had breast cancer in her thirties and then in her late 60's she got kidney cancer. She refused any and all help with getting to and from treatments and after care. She even went so far as to cancel her plans to be at my house for Thanksgiving that year without telling me why even though she knew she had the cancer. She and I always had a very strained relationship and by canceling at the last minute just compounded my feelings of being the red headed step child.
I wish your son the best. He will recover as his body recovers. I'm sure he will talk with his doctors if he has any concerns.
I also have a rather large nodule on my right thyroid. My surgeon found it while doing an ultrasound for the diseased parathyroid on the left side. He immediately did a biopsy because of the size. He was certain it was cancerous. The results were that it is benign and as long as it is not causing any problems it will stay where it is. I had surgery to remove the diseased parathyroid which has helped with many issues I was having. I am 64 and have numerous other health issues so I don't worry about the things that aren't causing me problems.
My thoughts and prayers are with you and your family. We dealt with a very similar situation with my mother-in-law. She was in end stage renal failure and along with osteoporosis was no longer able to care for herself. She decided that she was stopping her dialysis. Her mental faculties were impaired because of the kidney damage and thought if she stopped the dialysis she had to stop all medications including pain meds. She decided to do this just before the Christmas holidays.
I had a talk with her and told her that if she was truly ready to end her life that was her decision however I wanted her to think about those around her that would be affected by it. I asked her to think about her son and daughter and her grandsons and how it would affect them to lose her at Christmas. I reminded her that her death at Christmas would make a very happy family time a very sad time for a very long time. I lost my Dad at Christmas many years before and it affected me deeply. I also told her that she could stop dialysis but continue her medications. She wouldn't listen to me.
I talked with my husband and we decided to contact Hospice for advise. We didn't ask them to get involved, we just wanted information. However, they immediately visited her at the nursing facility and we hadn't even talked to her about getting them involved. The Hospice nurse immediately got her set up on morphine for the pain. The nurse also let her know she could continue her medications even though she stopped dialysis. We already knew that stopping the dialysis could be a painful process especially when her body began filling up with fluids and toxins that were no longer being cleaned from her system.
We visited her to discuss Hospice and saw that the morphine was giving her much needed relief from her pain. She had decided that her family was trying to stop her from doing what she wanted. She told us that the facility staff had contacted Hospice for her. We told her that we had contacted them for her because we wanted her to be comfortable.
She passed away on January 9, 2000. She was able to spend a final Christmas with her children and grandchildren enjoying each other's company and for a short while being the Mom and Grandma that we all remembered so well.
My heart goes out to your husband. I'm sure he would prefer to be with you and his son but I understand not being able to be around all the stress. Maybe you can go home for a day or two so he can see for himself that you are doing fine. I hope your son will allow Hospice to just come talk to him about what they can do for him and the family. They can be an invaluable source of assistance and guidance for all of you.
Hugs and Prayers.