I was 5 yrd old when my parens found out. my dad ahd it also. i am now 40 and my 2 out 3 children have it also. I have a6.3 cm x 5.5 cm tumoe enxt to my spien adding pessure to my nerves and sine causng grest and unbearable pain trhough my entire left side down to my butt and hip and left leg. The pain is so horrible a i may get 2 hr sleep a night. I have tried every aoin med their is but to no avail nothing. I've been told by 2 Neuorsuregns that nothing can be done and of the did the results would not be good. My neighbor is a Pain Mangement snd he told he can't even help. I sm so exhausted I dont know what else to do. I live about 1 to 1 1.2 from Philly ahs anyone out there tried or know someone eho has tried Cyberknfe?? Or is there anything esle out there??
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NF 1 tumors next to spine
- By pamamal
- Posted August 27, 2009 at 11:12 pm · 11 replies
- In Living with NF1
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11 replies
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- By mygangof5
- Posted August 28, 2009 at 8:37 am
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WOW are you writing about me???? lol I have numourous tumors next to spine and my whol elower left side is in constant pain. I have had a 30 pound tumor yes that was not a typo it was 30 POUNDS removed 3 times now. had to change doctors due to insurance and now I have a QUACK that tells me there is no reason I should be in this kind of pain!!!! Pain clinic says thye can't help either!!!
- By dababyrn2006
- Posted August 28, 2009 at 10:38 am
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I have a very big plexiform on my lumbar plexis and multiple tumors in my pelvis and both sides of my groin. I get my pain relief from taking Methadone 3x a day, lortab for breakthrew pain, and nerontin 900 mg 3 x aday. I am seen by a pain specialist at the U of M in ann arbor Mi. I suggest that you find other doctors. I have been told many times that I can't have the tumors removed from the lumbar area. My pain is alright except when it is rainy out or cold. Then I am in bed rolling around trying to find a comfortable spot. Ha never happens though.
Try a university hosp that has a pain clinic. I hope this helps you and it sounds just like me when you gave a discription of your pain!!!
- By pamamal
- Posted August 28, 2009 at 9:49 pm
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I was just at my family Dr's todsy at he put me on oxcycotin 20 mg ..during thr dy and he said it's a 12 hr tehn for at night he gave me oxcodone 5mg when needed for pain. I am also looking into cyberknife in oir area to see if I qualify to have it shrunk with radaiation.
wish me luck!! Also I am going to get a second opionioan at THE UNIVERSITY OF PENNSLYVANIA OR TEPMLE UNIVERDITY HERE IN PHILLY PA
- By payanannet
- Posted August 28, 2009 at 11:05 pm
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i also had really bad pain from my butt all the way down to my rigth leg it lasted 3 years about 3 months ago i got some test done doctors found a big tumor in my spine C2-C6 i asked if that was the cause of my pain the neorusergent said no but i just reasently got the tunor removed i havent had that pain on my leg scince got other stuff going on but that pain went away so maibe if they remove the tumor the pain will go away
- By catmom08
- Posted August 29, 2009 at 11:31 am
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well this gives testimony to the fact that nf is a disabling condition. however since we are all different in how we are affected it will be hard to convince ssi that those of us who are lesser affected can get it but i am trying.
sorry to hear about your pain everyone. i have one on the spine but no pain right now. i was told nothing can be done as it may leave me paralzyed and if its not prssing dont worry etc etc. i have no insurance and the county has cut back so there is no way to insure if its growing or not. i hope not.
i wish everyone luck in finding treatment and relief from pain. i think they ought to have a special class in medical schools for each disease so the new doctors can meet patients and learn how these different diseases affect people. it would help bedside manners.
never let a doctor tell you that you are nuts or nothing is wrong unless they find a way to live in your body. nobody knows what your body feels but you!!!!!!!!!!!!!
- By 555
- Posted September 1, 2009 at 7:49 am
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I also have tumors in or near mine spinal canal and I was told that it would do more harm than good to remove them and still no garente that the pain would be gone so I get to keep both the pain and 100s of tumors I have in my spinal cord region. I wish you the best of luck in finding a good doctor.
- By Kivalina
- Posted September 1, 2009 at 1:06 pm
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i got the tumors along and in spine also.Nobody will help i am in pain so much i can't remember what a painless day is like.I so hate nf now
- By AuntieRo
- Posted September 1, 2009 at 6:45 pm
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I did have the Cyberkinife last October. The follow up MRI in April showed no difference in the size of the tumors on my spine. So I guess the good news is, they did not grow. I have another follow up (1 yr) this October. I'm guessing the Cyberknife did not shrink the tumors, because I am still in pain. I am on quite a bit of medication and now considering the Spinal Cord Stimulator.
Whatever you decide, know you are not alone. This NF is a total bummer. It has completely changed my life in the past 2 yrs. I am determined I will feel better someday, hopefully soon. See my picture, that's me in Hawaii, and as soon (and I mean as soon!!) as I feel better, I am going back. Aloha!!
- By pamamal
- Posted September 1, 2009 at 11:27 pm
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Hi everyone I stated this topic well here goes.. I got from Philly CyberknIfe today there not sure if they can help or not yet they need to do more research first. My pain is a little better since being on the newe meds. I figured i takd ethe 12 hr at night and if needed the 5mg during and 1st thing in the morning ..but really need to eat with this stuff.( oxtycotin and oxyconde). my tumor is between my L3 and L4. my pain got so bad that I have now a handicap sign for my truck if any of you are as bad enough in pain llke me you should ask you Dr to fill out the forms. i got mine in less then 3 weeks and it;s great!!! It's worth a shot for all of you in pain like me.
- By dababyrn2006
- Posted September 2, 2009 at 10:24 am
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I know what you mean about the handicap stickers. I love mine, I have had it for almost 2 yrs now. The only thing is that bugs me is that they are given to people who really don't need them. And I really hate it when I see a person sitting in their car and talking on the phone when some one really needs that spot. People are so ignorant sometimes. My husband is a truck driver and says to me that people get into their cars, remove their heads and shove them up their you no what to drive. And I believe him.
Sorry just an opinion. Hope I don't offend anyone.
- By pamamal
- Posted October 7, 2009 at 8:30 am
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well i had mu visit at Philly cyber Knife and I start my radaition next week. THANK GOD!!! the pain has gotten worse so I will let all of you know if it works. I have to have about 3 to 5 treatments and we will go from there.
thanks\god bless
Andrea
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