Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Joyce, You're not alone in the pain department. I have the exact pain that you described. It stared on my left side, I found I had a 6 cm tumor so it was removed, the pain was gone. Then about 6 or 7 months ago I was getting the pain again, this time on the right. I found that my right AN had grown from 2.5 cm to almost 4. I'm getting that one out next week. Has any DR's ever thought that the pressure of the dying tumor could be causing you this pain?? After my tumor was removed, the pain was gone so I assumed that's where it came from... Hugs and good luck, in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Is the pain you are feeling in your head, in the area of your acoustic neuroma?? I never heard of this before; many folks who have spinal tumors have pain, but I had not heard of it from acoustic neuromas; I know they can kill you, but I didn't think they were painful! Before I jump from hearing to ABI, I would want to check and be sure what the cause of the pain was; have you tried sending your scans to Dr. Brackman or someone who does a lot of NF2 work, and get their opinion on the cause of tha pain; maybe the tumor is against the nerve, I'm no medical person, so I could be all wet, just wondering. Marie fauchon wrote: > > > Hi There! > > In response to your question. > > > > Can you please explain why you think you have pain from the AN that was > gamma knife treated? How big was it at the time you received the gamma > knife treatment? > > The tumor was only 2.8 cm. Now I seem to have misled people. I was > already suffering a great deal of pain prior to the Gamma Knife > treatment. In fact it was the intolerance of the pain that forced me to > seek treatment at the time. I had hoped that the Gamma Knife would cause > the tumor to shrink somewhat, and still allow me to retain my hearing. > Well I've retained my hearing all right, but my daily life is impacted > by pain that increases in direct proportion to my activities of the day. > Detail work such as working on the computer, sewing, or even driving a > car seem to be worse than physical activity. And as the doctor's cannot > tell me why I suffer the pain, they are unable to offer a solution at > this point. > > Having recently heard about ABI's I am actually hoping that they might > be the solution. As you may or may not know these are not available in > Canada at this time, so I'm still in the research stage, and am reading > with a great deal of interest all that is said in the many e-mails that > I am now receiving. > > Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 I remember Dr. Brackmann at HEI saying they use a piece of fat to make a little cushion between where the tumor was and the nerve. Don't quote me on that though, I maybe wrong. Mark ----Original Message Follows---- Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: Pain Date: Fri, 18 Jun 1999 19:31:52 -0400 I wonder if there is any way they could " cushion " the place between the tumor and nerve, so it isn't touching?? I should have gone to medical school, and then I would know all this stuff I wonder about!! Also wonder if they could cut the nerve , end the pain, but leave the hearing?? Just wondering out loud! Marie fauchon wrote: > > > Hi Marie. > > Since I e-mailed you this morning I have since heard from another NF2 > sufferer who also sufferes pain. I often liken it to having a toothache > in my ear which still has the tumor in it, it is a dull and throbbing > kind of pain. Now I can get the pain to increase to a sharp stabbing > pain just by participating in just about any activity, so I tend to pace > myself very strictly in an effort to avoid the sharp stabbing pain. I > have tried many pain relievers and the either do not touch the pain, or > they deal with the pain, but leave me as a non-functioning zombie. I > have the leading neurosurgeon in British Columbia who monitors my MRI's. > I tend to agree with you, that is more than likely the tumor against the > nerve, as I'm told there is actually very little space in the ear canal > for these extra growths. > > Joyce > > PS. As an aside - My grandmother who from all that we know now, had NF2 > lived to be 101. I myself would not want to live that long, as the last > few years of her life were pretty limited as far as activities. Most of > the last year she was bedridden. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Actually I think the fat is packed in the soft spot where the skull was taken out. I'm not sure if it has anything to do with the nerves. Good question to ask though. in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 I wonder if there is any way they could " cushion " the place between the tumor and nerve, so it isn't touching?? I should have gone to medical school, and then I would know all this stuff I wonder about!! Also wonder if they could cut the nerve , end the pain, but leave the hearing?? Just wondering out loud! Marie fauchon wrote: > > > Hi Marie. > > Since I e-mailed you this morning I have since heard from another NF2 > sufferer who also sufferes pain. I often liken it to having a toothache > in my ear which still has the tumor in it, it is a dull and throbbing > kind of pain. Now I can get the pain to increase to a sharp stabbing > pain just by participating in just about any activity, so I tend to pace > myself very strictly in an effort to avoid the sharp stabbing pain. I > have tried many pain relievers and the either do not touch the pain, or > they deal with the pain, but leave me as a non-functioning zombie. I > have the leading neurosurgeon in British Columbia who monitors my MRI's. > I tend to agree with you, that is more than likely the tumor against the > nerve, as I'm told there is actually very little space in the ear canal > for these extra growths. > > Joyce > > PS. As an aside - My grandmother who from all that we know now, had NF2 > lived to be 101. I myself would not want to live that long, as the last > few years of her life were pretty limited as far as activities. Most of > the last year she was bedridden. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Mark: You are right about that Mark, with my first surgery in 1981 that was not done and I recently had middle fossa in Feb at HEI on the other side and they removed some fat from my abdomen to place over the nerve. With my first surgery I have had continuous ongoing pain. Doctors at HEI told me it was because of the type surgery that was done the first time. They did not fill in the area and just stretched my scalp back over the invasive area and sewed it up. Now I have regrowth on my first side and when they do surgery on that side they can reconstruct the skull which they say will help tremendously. The middle fossa surgery did preserve my hearing which I am thankful. Sue from mid-Mizzou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 In a message dated 6/18/99 10:57:18 PM Eastern Daylight Time, Misha64@... writes: << Actually I think the fat is packed in the soft spot where the skull was taken out. >> On my first AN surgery....they did the direct thru the ear canal approach (not remembering or caring what the name of that is) and they removed some fat from my abdomen to 'fill in' the soft spot. Not to mention the spackle they used from the local hardware store :-) -Earl E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 At 03:37 PM 6/18/99 -0400, you wrote: > > >Is the pain you are feeling in your head, in the area of your acoustic >neuroma?? I never heard of this before; many folks who have spinal tumors >have pain, but I had not heard of it from acoustic neuromas; I know they can >kill you, but I didn't think they were painful! I am trying to catch up on my mail, from being out of town for the weekend. Not sure who wrote the above, but, I also have a lot of pain from my AN (which is a recurrence). In fact, I was at a conference over the weekend and mentioned the pain to Brackman. We never had time to elaborate on the subject, he just said that the AN needs to come out if it is causing pain. As mentioned previously, I am taking medication which helps to minimize the pain. Sherry Quote Link to comment Share on other sites More sharing options...
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