Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Georgia, This is very hard to read about Katrina. Of course, I realize it is much harder to be a parent to this damned situation. I, too, have sciatic nerve involvement but not because of a tumor. It is real uncomfortable despite the meds. I can't even think of a young person tolerating this. My prayers are with you. Love, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Hi Georgia Doctors hate me. I take along bits of information I have picked up, between visits and then they have to spend the time discussing or allaying my fears. This will be so with this bit of valuable information. Considering that the sciatic pain, always later in the day, just shoots through me certainly indicates that if it's not a tumour, maybe it's something that can be fixed. My doctors have told me that I am to tell them everything. That all too often NF2 will get the blame for every pain and quite often there are symptoms that can point to a condition that can be fixed. ine pn Hi , A plexiform neurofibroma is a tumour on the plexus (where the nerve bundles spread out to become individual nerves). In Katrina's case it began on her sciatic nerve, probably in utero, and now the whole nerve has itself turned into part of the tumour so it can't be removed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 ine and Marnie - I am with you. I work with doctors - and once in a while they will make comments about patients going to the internet to get educated. I remind them that it is good for our patients to be informed. When I had a schwannoma removed from my vagus nerve 3 years ago, I was told "this is very rare - you will NEVER get another one." 8 months ago I had another one removed from the same location and the same surgeon said "this is odd - I can't believe you got another one". I thought if this is so odd should I be worried and she assured me that I didn't need to be worried. Well I started checking these "Schwannomas" out on the internet and kept coming up with NF. I went to see a Neurologist at the University of Michigan who checked me over head to toe - said since I only had 2 cafe au lait spots and I passed the functional neuro tests with flying colors that I did not have NF. He never bothered to order an MRI of the brain - but he did give me a script for my worsening headaches. About 6 months later I found another lump on my neck same place. I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. He said the tumors in my neck were the same tumor growing back and not to worry. I told him I wanted to know for sure because my daughter wanted to get pregnant again - he acted like I was nuts. I left there - talked to one of the doctors I work with and asked if I could orer an MRI of the brain because I had read about the association of AN and these tumors with NF2. That's how I found my 1.5cm brain tumor. The doc from U of M called me immediately after I faxed him the results of my brain MRI. Thank God I didn't take their word for it. Shame on all of them for not being sure and ordering an MRI. I told them about the symptoms I have been having too - I have never felt as bad as I have been feeling over the past 2 years and I couldn't explain it. Thank God for the Internet (reputable sights). We have to take charge and ask questions - doctors can and do make mistakes and overlook things - they are only human. There IS only one God!!!!!! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 A big AMEN to that Dianne. I am glad you were persistent. Our persistence pays off. God bless. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 Oh, Dianne, You bless me! I only hope that I can fine help as you FINALLY did. How bad or your headaches? Mine are ungodly. > Thank God for the Internet > (reputable sights). We have to take charge and ask questions - doctors can > and do make mistakes and overlook things - they are only human. There IS > only one God!!!!!! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 Greg - yes - it was at U of M that I met with the genetic doctor - he said I had an isolated schwannoma - Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 - mine are pretty bad - I have had headaches most of my adult life - BUT - they have gotten alot worse over the past 2-3 years. How long have you had them? Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 The Doctor at U of M did use my family history as a basis for diagnosis. He did tell me that since my parents didn't have it that I wouldn't. I even have his dictated report. The only thing I know about Schwannomatosis is that like NF2 - the tumors can grow anywhere on the body on a nerve. I was told it is not hereditary. But that's about all I know. Not much info out there on it. Currently I have a tumor on my neck (that's the one I knew about when I went to U of M) and one in the brain. But my question is - if tumors can grow on any nerve - if one should develop on my AN would the diagnosis then be changed????? Or is that not a possibility. Who knows - I sure don't. There is even less research on this condition. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 Re: pn ine and Marnie - I am with you. I work with doctors - and once in a while they will make comments about patients going to the internet to get educated. I remind them that it is good for our patients to be informed. When I had a schwannoma removed from my vagus nerve 3 years ago, I was told "this is very rare - you will NEVER get another one." 8 months ago I had another one removed from the same location and the same surgeon said "this is odd - I can't believe you got another one". I thought if this is so odd should I be worried and she assured me that I didn't need to be worried. Well I started checking these "Schwannomas" out on the internet and kept coming up with NF. I went to see a Neurologist at the University of Michigan who checked me over head to toe - said since I only had 2 cafe au lait spots and I passed the functional neuro tests with flying colors that I did not have NF. He never bothered to order an MRI of the brain - but he did give me a script for my worsening headaches. About 6 months later I found another lump on my neck same place. I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. He said the tumors in my neck were the same tumor growing back and not to worry. I told him I wanted to know for sure because my daughter wanted to get pregnant again - he acted like I was nuts. I left there - talked to one of the doctors I work with and asked if I could orer an MRI of the brain because I had read about the association of AN and these tumors with NF2. That's how I found my 1.5cm brain tumor. The doc from U of M called me immediately after I faxed him the results of my brain MRI. Thank God I didn't take their word for it. Shame on all of them for not being sure and ordering an MRI. I told them about the symptoms I have been having too - I have never felt as bad as I have been feeling over the past 2 years and I couldn't explain it. Thank God for the Internet (reputable sights). We have to take charge and ask questions - doctors can and do make mistakes and overlook things - they are only human. There IS only one God!!!!!! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 .. At U of M your neurologist said this, Diane?? I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 In a message dated 5/20/01 3:15:52 PM Pacific Daylight Time, DiSpads@... writes: << Greg - yes - it was at U of M that I met with the genetic doctor - he said I had an isolated schwannoma - Dianne >> Dianne, Are you in Michigan? Lori Jo in MI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 In a message dated 5/20/01 2:26:32 PM Pacific Daylight Time, GREGIERY@... writes: << I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. >> NF2 can occour without either parent having it. I forget what this is called spontaneous mutation? Lori Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 In a message dated 5/20/01 2:21:12 PM Pacific Daylight Time, GREGIERY@... writes: << ine and Marnie - I am with you. I work with doctors - and once in a while they will make comments about patients going to the internet to get educated. I remind them that it is good for our patients to be informed. When I had a schwannoma removed from my vagus nerve 3 years ago, I was told " this is very rare - you will NEVER get another one. " 8 months ago I had another one removed from the same location and the same surgeon said " this is odd - I can't believe you got another one " . I thought if this is so odd should I be worried and she assured me that I didn't need to be worried. Well I started checking these " Schwannomas " out on the internet and kept coming up with NF. I went to see a Neurologist at the University of Michigan who checked me over head to toe - said since I only had 2 cafe au lait spots and I passed the functional neuro tests with flying colors that I did not have NF. He never bothered to order an MRI of the brain - but he did give me a script for my worsening headaches. About 6 months later I found another lump on my neck same place. I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. He said the tumors in my neck were the same tumor growing back and not to worry. I told him I wanted to know for sure because my daughter wanted to get pregnant again - he acted like I was nuts. I left there - talked to one of the doctors I work with and asked if I could orer an MRI of the brain because I had read about the association of AN and these tumors with NF2. That's how I found my 1.5cm brain tumor. The doc from U of M called me immediately after I faxed him the results of my brain MRI. Thank God I didn't take their word for it. Shame on all of them for not being sure and ordering an MRI. I told them about the symptoms I have been having too - I have never felt as bad as I have been feeling over the past 2 years and I couldn't explain it. Thank God for the Internet (reputable sights). We have to take charge and ask questions - doctors can and do make mistakes and overlook things - they are only human. There IS only one God!!!!!! Dianne >> Dianne, U of M is where my Mom went almost 16 years ago to find out what was arong with her. They told her she had less then 2 years to live and to go home and wait to die. They did not check her for NF2 and she finally found a Doctor in Ohio that diagnosed her and operated on the tumor that was on her brain stem and saved her life. My Cousin and Aunt have NF2 and they say that U of M is a great place for NF2 patients but I have serious doubts on that. I see Dr. Jack Kartush at Michigan Ear Institute my Mom has seen him for years. I was just wondering what others think of U of M. My Aunt keeps telling my Mom that I need to go there instead. Lori Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 Lori Jo - where do you live? I hear good things about Michigan Ear. Do you have an AN? Do you have other tumors? I am going to go to Boston once a year to see Mia MacCollin - and I am going to Dr. Lederman at the end of June for Fractionated Radiation for the tumor in the brain. After that, I am not sure what I am going to do. I really think I am going to get a general physician out of Beaumont in Royal Oak. I guess it depends on if I get any more tumors. I am not doing anything but watch the tumor in my neck. I was very disappointed in U of M and don't want to establish myself with them. Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 AND REMEMBER!! Always get more than one opinion! Jeff W. -----Original Message-----From: DiSpads@... Sent: Sunday, May 20, 2001 3:00 PMTo: NF2_Crew Subject: Re: pnpast 2 years and I couldn't explain it. Thank God for the Internet (reputable sights). We have to take charge and ask questions - doctors can and do make mistakes and overlook things - they are only human. There IS only one God!!!!!! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 Prayers said for Katrina and for Georgia!! Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 And, having an isolated schwanoma, this is the reason your doctors have not diagnosed you with NF2? It can't be because your parents. That has no bearing on whether or not your have NF2, since it can occur spontaneously. I think you mentioned that Dr. Mia from MGH said you have schwannomatosis? Do you have much information regarding the research that has been done on this disorder? I'm curious if a comparison study could be completed to show the similarities/differences between NF2 and swhwannomatosis. Greg - yes - it was at U of M that I met with the genetic doctor - he said I had an isolated schwannoma - Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 your parents may not have it or any other relative. So maybe you're a genetic mutation like I am, because none in my immediate family have it either. Mark ----Original Message Follows---- Reply-To: NF2_Crew To: <NF2_Crew > Subject: Re: pn Date: Sun, 20 May 2001 17:23:04 -0400 .. At U of M your neurologist said this, Diane?? I went to the NF sight and found the name of a genetic doctor at U of M. I went to see him - he did my family history with me and told me that I did not have NF because neither of my parents had it and there was no way I could have it. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 I would say yes, as that is one of the criterias for NF2. Carol DiSpads@... wrote: But my question is - if tumors can grow on any nerve - if one should develop on my AN would the diagnosis then be changed????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Dianne, Been there done that! Why are most doctors so egotistical (sp?)? and WHY DO THEY HAVE TO TREAT US LIKE WE'RE CRAZY? Just because they don't know what's wrong doesn't mean something isn't wrong! Jeff D Quote Link to comment Share on other sites More sharing options...
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