ANA Discussion Forum
AN Community => AN Community => Topic started by: Richard in Palacios on September 23, 2009, 10:24:42 am
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I have been remiss in not posting for the last many months. I'll try to explain later in this message. First the good news. If you remember, I was doing the watch and wait thing until my AN doubled in size between yearly MRIs. Having done my research during those 2 watch and wait years, I placed myself in the hands of DR. Vrabeck (neurosurgeon) and Dr. Teh (radiation oncologist). Together we decided that the Stereotactic Radio Surgery via the LINUX system was my best option. The procedure was performed in June of 2008. Other than the pain from the screws attaching the frame to my skull, the procedure was straight forward. I'l try to post that experience over in the treatment options section of the forum later The one year later MRI showed "no growth" in the tumor. A best possible outcome. Soon after that news,I begin to sufer from became a crippling neuropathy. I had such extreme pain in the feet and legs that I became wheel chair bound as well as losing most of the use of my hands. After a rather ardous search for a neurologiast who knew something I finally found one (he was #5) who was willing to take the time to do the necessary tests to make a diagnosis. After a spinal tap, 4 musce bopsies, and a nerve bopsiy he had a dignosis and a treatment plan for what we then knew as "vasculitis". I have completed the first 4 months of a chemotherapy regieme agumented with huge amounts of steroids. I have two months to go. I have regained most of the use of feet and legs and am begining to get my hands back as well. It has been an interesting year. Hopefuly, more later.
Richard
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WOW! You have been thru the ringer! So glad that you were able to finally find a Dr and more importantly, that you begin to regain use of your legs and hands!! Keep us updated as you can...
K
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Richard! Oh, my... how terrific to see you back. You have been missed. You've been here almost as long as me and I'm thrilled to get an update on you. We all need a break from the AN journey every now and then and glad you decided to peek back here and say hi.
I am SO sorry to hear you have had such a rough time. As one with numerous neuopathy issues, I can well relate to many issues you have come across and tickled you are doing better now. Please don't be such a stranger.... and please keep us updated on how you are doing. I'm cheering you on, as always! :)
Good to see you!
Phyl
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It is good to see you posting Richard. I hope you will post when you can.
Blessings
followinghim
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Hi, Richard ~
It's good to see you posting again and more importantly, to learn that your radiation and recovery went well and, although you went through an arduous time dealing with neuropathy as a result of what you now know was vasculitis, treatment appears to be effective and you're recovering from that, too. Two significant victories and well worth a visit to the ANA forums. Welcome back!
Jim
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Richard: so glad to hear you're healing ! ! That must have been awful when it happened, jeez louise...
Always good thoughts, Nancy
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Hi Richard,
I'm so glad your found a good neurologist that came up with a treatment plan. What a fight you've had (and are still fighting). Thank you for updating and letting us know how you're doing and what's been happening.
I wish you well on your remaining treatment.
Keri
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Richard -
it's great to hear from you and also great to hear that your MRI showed no growth.
However, I'm sorry about your health problems. My mom has neuropathy and one of my sisters has vasculitis, so a know a tiny bit of what you've been going through.
Hang in there, and as Phyl said, don't be a stranger; we missed you!
Jan
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I am so sorry that you have suffered so much, and am also relieved to hear that you seem to be on the rebound. You will be in our prayers for continued improvement. God bless!
Priscilla
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Richard,
So glad that your MRI results were good. Sounds like you have taken the bull by the horns and are doing the best possible treatments for your other problems. I will continue to keep you in my thoughts and prayers and am sending positive energy your way. Keep us posted on how you are doing.
Brenda
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Thanks to all of you for the kind and encouraging words. It has been quite a jourey to this point. If nothing else, I can now advocate that anyone facing various treatments have a team in place and insist that you are informed with all your options openly discussed. Do your own reasearch and be as informed and stuborn as necessary to find the approach that you believe is right for you and your condition. I was very fortunate to have the time to do my reasearch related to the treatment of my AN. I actually read many of the articles published by the team members I finally selected. Yes it was tedious but so worth it when the treatment begin. Going into treatment from a position of knowng what was happening and why put me a position of strength as far as what was done for me. Knowledge truely is power. My battle with the vasculitis really did not give me te luxery of time as the AN did. I did my homework on the fly so to speak. The first two neurologists that ran me through the test mill found no sigifigant findings. I knew something was wrong and pushed my way through the the additional referrals to get to someone who knew and recognized the issues. It ws ugly at tmes but so worth it in the end.
Richard
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Richard,
Holy cow! What a bumpy road for you! I'm glad to hear you're on the mend. It must have been a scary and frustrating thing to have to go through.
Glad you're back and I hope you continue to get better and better!
Lori
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WOW, dealing with an AN is bad enough, but vasculitis on top of it would indeed be overwhelming. So glad you are on the right road to recovery now!
Clarice
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Keep at it. One day at a time. One foot in front of the other.
We're here.
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Hi Richard,
Sorry you had to go through that experience, but the good news is that you are getting better. I wish you the best of luck with your continued progress.
Vivian