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Haenzahl, welcome... I see you've been an MDJ member for quite some time. I am newer, and just recently was honored by being asked to become the group leader for the NF support group so I am trying to make rounds and introduce myself to each member. I am sorry that you are experiencing what you are, and I hope to help you with support and finding information that pertains to you specifically. If I cannot answer a question for you, I will do my best to find it! Many people with NF can develop losts of tumors, and still have a relatively normal life, while others experience a lot of toruble from them. No one can really say what your experience will entail because NF is just one of those conditions that can change from day to day, and can be so very different for each individual person. From what I understand though, is that there is always risk of tumors growing back after being surgically removed. I am not sure on percentages right now, but even statistics are just numbers, IMO. They can be useful, but this is still a condition that varies drastically from one oerson to another so it will always be difficult to say what may or may not happen with each individual person. The best thing to do right now, is to learn what you can, keep informed, make sure your doctor is familiar with NF, and apart from that, we need to help keep you strong emotionally. Fear can often be one of the hardest aspects to overcome in this disorder. There are certainly the aspects of pain and self-esteem issues, too, that rank right up there as well. All those things require positive support so I am glad that you are here, and hope that we can help you with that. Please keep us informed on how you are doing so that we can better support you, okay?  Malignancies in NF can happen, but are fairly rare. There is a family near me who has been through it so I am a bit familiar, but again although it does happen, more often it does not. Some tumors can be considered "semi-malignant" if they are posing risk of a permamnent disability, such as in my daughter's case, whereas she has bilateral optic nerve gliomas (tumors on her eyes/optic nerves), and although benign, their placement & risk of further growth poses risk of bindness or even partial blindness. If you are experiencing fibromas that are posing risk of paralysis then of course you are terrified, and need even more support. What has your doctor told you so far about his thoughts on your specific case right now? And, has he recommended any treatments to consider yet? I am also wondering why your neurologist is sending you back to your original clinic from so long ago?? This concerns me because it is a neurologist who should be following your condition and helping to treat you. Please feel free to PM me if you would like to discuss this further in private, but you are more than welcome to continue posting here on the forum as well, if you are comfortable in doing so. Please let me know what I can do to assist you. (((BIG HUGS))) I'm F.I.N.E. Frustrated, Irritated, Nonfunctional & Everything hurts!! Sarcasm: Embrace it!  ______________________ "The unanswered questions aren't nearly as dangerous as the unquestioned answers." ______________________ I know God will not give me anything I can't handle. I just wish he didn't trust me so much. - Mother Teresa ______________________ "There's always light at the end of every tunnel, just pray it's not a train! "  ______________________ Faith makes things possible, not easy!
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NF Support Forums
