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Schwannoma/Neuroma
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Schwannoma/Neuroma

I would appreciate information about the following:
What is the difference between a neuroma and a Schannoma?  If a person is experiencing neuropathy in the peroneal nerve which is likely caused by a neuroma or a Schwannoma, what is the recommended treatment?  Also, if surgery is the recommended treatment, what risks are entailed in operating on the peroneal nerve?  
Thank you for your assistance.
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Dear Linda:

A schwannoma is a benign tumor of the myelinating cell of the peripheral nervous system.  A neuroma is a benign tumor of a nerve.  Both can cause a neuropathy.  The more likely is a schwannoma.  Unless there is enough compromise to warrant it, surgery is usually not performed.  But, each case is individual.  Most of the risks are dependent on the size and location of the tumor, and the surgeon.  I can't really tell you because I don't know these variables.

Sincerely,

CCF Neuro MD
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Dear Linda:

Schwannoma, created by schwann cells.  Main principle, to create and maintain the myelin sheath that covers and protects the nerve within.  Overabundance of these cells in certain areas cause tumors.  Hence, schwannoma.  They were discovered many moons ago by a German scientist (Dr. Schwan), and believe me... I'm very up-to-date when it comes to discussing this particular arena.  I have Neurofibromatosis and have survived what a trinity of Emory doctors have labeled "a massive, huge and extensive craniotomy" for the removal of benign schwannoma growth on the 7th cranial nerve.  Impingement to the orbital floor of my left eye socket resulted in having to rebuild it.  They excised schwannoma from my optic sheath... and I am alive to tell the story.  But it is another matter altogether.

The main theory to schwannoma control is to observe them because they are very slow-growing tumors.  Observation could last for years and the patient usually calls the shots on when they are to be removed.  It's a hard call to make, but... most schwannoma eventually lead to pain.  My pain warranted the use of morphine sulfate in combo with four other pain meds.  I took pain for over 4 years until I couldn't stand it any longer... and called the shot.  (The shot was called after years of investigative MRI's)

Please, educate yourself to the max if it is you suffering from schwannoma.  I am available if you need more information on this subject at ***@****.

Sincerely,

C Taylor Jenkins (Iam not a physician)
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thanks for your comments

CCF Neuro MD
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Doc,

You're welcome.  And with all my understanding, I hate the dad-gummed things.  Question?  Can excision (shaving) of schwannoma lead to partial restoration of nerve function after many, many, many moons of paralysis?  I ask this because the other day I was checking myself out in the mirror and received the shock of my life.  Namely, movement where there didn't used to be in the lower lip.  I smiled and low and behold, I could even feel it happening!  The upper lip is still motionless, but I actually have a laugh line and a matching dimple.  There is also a fair amount of zapping going on back and forth along my jawline.  Is it possible Doc?  After all this time?  And should I really put the pedal to the metal in the exercise department?  (Incidently, I'm down to 90 mgs of MS- Contin.  I started reduction at 180 mgs.)

Sorry to take up this space, but... strange phenomena is happening in the schwannomal arena and it's a first for me!  Thanks for your time and hopefully, your reply.

C Taylor Jenkins
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To Doc RPS:

You're welcome.  I don't suppose you would give me a passing grade on this chapter, huh?  All kidding aside, I still detest the dad-gummed things, no matter how much data has been digested over the years.

I have a serious question for you, Doc.  It has me somewhat flipped-out to say the least.  We all know that excision of schwannoma carries the distinct possibility (probability) of causing extensive paralysis, correct?  So... what are the chances of regeneration after many, many, many moons of disfunction?  I ask because there is a vast difference between the procedure of clipping a nerve as opposed to shaving its sheath?

I am experiencing movement where there was none for years.  My husband, after my excited display, had to dive for total privacy.  He hadn't seen my laugh line, let alone the matching dimple for years.  My kids kept saying, "Do it again, ma!"

Hey Doc?  This is serious stuff!  I need a little feed-back here.  After being bald as a billiard ball, not to mention everything involved with having such a craniotomy, then to have such a shock... is it possible that "shaving" freed the frozen?  I could use a little expertise here!  What's going on?

C Taylor Jenkins

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Dear C Taylor Jenkins:

A peripheral nerve will die after 18-24 months where the axon does not meet it's end organ (usually muscle).  However, axons can sprout and other nerves can actually take over some of the function of dying neurons.

CCF Neuro MD
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Doc RPS:

Heavy, heavy, heavy.  Like the old Beatle lyric:  "It's getting better all the time..."  Thanks for the info.  It's got to be a classic case of sprouting axons in cahoots with other nerves.  I'm just elated about this.  The dimple gets deeper the  more I exercise.  I see my neurologist 11/3 and I hope it floors him along with all my med reductions.  I'm down on neurotin - 2700 to 2400 mgs.  Ritalin dove from 60 mgs down to 20!  Life's looking good for once after all the bad.  Cool!  I'm in it for the duration.  You were right... slowing down made all the difference in recovery time.  Life is long and I'm gonna live it well.  I count life just a stuff to try the soul's strength on.  Thanks again.

CTJ
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you are welcome

CCF Neuro MD
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Doc RPS:

I'm going for stereotactic radiosurgery tomorrow.  Have to be there all day long.  Wanna know something?  The whole idea scares me and with all the **** I've been through with the craniotomy and all, you'd think it wouldn't.  Reading all the instructions gave me the headache reserved for the headgear I get to be adorned with tomorrow.

I still have a small portion of schwannoma in the deep cavernous that couldn't be surgically removed during the craniotomy.  Should I expect this radiosurgery to "kill" it for good or just "slow" it down, the latter being the true nature of the creepy things (when associated with NF)?  I just want all the growth to stop.  They never seem to stop, Doc.  Energizer Bunnies.  That's what they are.  Keep going and going.  I've been battling them for so long, I want some kind of miracle to happen.

Can I get some kind of reassurance from the "Dynamite Doc"?  My question is:  How long til it grows back, if it grows back?  And do the headgear pins touch the bone?  I'm insecure about this.

CJenkins
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Dear Ms. CJenkins:

I am not sure what to tell you.  Schwannomas are usually slow growing, even in the face of NF.  Radiotherapy will get rid of them but reoccurance is unknown.  The data is plus to minus encouraging but it is sparse and individuals respond differently.  Don't worry about the head attachments, they are necessary for stereotatic guidance (much better than the alternative).  Hang in there.

CCF Neuro MD
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Doc?

I did it... have deep rosy marks on my left temple and three holes where the headgear fastened.  They usually secure with four, but because they removed that section of bone to assess the left temporal region only three were used.  Don't let anyone tell you that radiosurgery is easy.  It may appear "easy", but in reality, it's harsh and fatiguing.  I felt fine, until I got home.  A tremendous headache (no migraine holds a candle to it) set in and nothing could be done for it.  Then I took my evening meds.  Five minutes later I began vomiting and couldn't stop.  A Phenergan suppository ended that ordeal and knocked me out cold.  I woke up so fatigued it took every ounce of strength I had to rise.  The headache was still there, only half as strong.  Food was out of the question and so were my morning meds.  Missing two doses of pain medication took its toll and I realised that I will never have quality of life without them.  I'd be a coiled-up mess-of-a-person without them.  They screw the headset in to the bone and god... it hurt so bad when they removed it because the pressure was gone.  I hope and pray they shut that deep sob down and I never have to deal with it again.  My head is hurting, so...

Thanks for responding,

C Jenkins
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Doc RPS:

I just want to tell you that you've hung in there with me through all this junk.  From HRT and NF, a massive craniotomy and now this.  You may not have said a whole lot, but what you did say helped me down this road I've been thrown upon (heredity decided the route).  We've swapped quotes and they are comfort in themselves.  You ought to use them more often in other posts where applicable.  I must confess something.  I am Lady Jay.  Yes.  Talent runs in the family.  My dad is a retired drummer circa 1935-1965.  Swing was his game and my mom also.  She played trombone (a silver Busher)in an all-female dance band.  My gramps was a piano tuner and trombonist.  I played trumpet, french horn, flute, oboe, then paralysis struck and I did the same on guitar.  It's curious to mention that my great gramps was known throughout Ohio as the Pioneer Singing Schoolteacher.  In short, he was a circuit rider and invented the songwriters wheel.  It's preseved neatly on buggy leather.  Yeah, it runs in the family.  I thought I'd confess that to you.  Now I feel better.  And I'm going to continue my novel and get published.  Thanks for the all-around inspiration for my physician character.  You'll never know how much influence this entire forum has had on that one by your answers alone.  Good neuro's are never a dime a dozen... patients, like musicians are.  Convinced that I am Lady Jay?  Indeed!

Take care, doc... and keep the forum alive!

Yours,

C Jenkins
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Dear Lady Jay:

Thanks, as a former french horn and trumpet player and lover of jazz I am happy that you see the world through the scales of tones and vibrations.  

Sincerely,

CCF Neuro MD
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Dear Doc RPS:

I suppose you could say that I love jazz in a Spyro kind of way and the world through the triad.  Three notes of the chord plus the add-ons... 5ths, 6ths, and 7ths, etc.  Guitar and piano are bedmates, but the keys are king.

When my pain gets real bad?  I mosey over to my Roland, select a really hollow sustained sound like maybe masses of strings or a string ensemble and let it go.  I don't play anyone else's stuff, I play my own compositions and using sustained tones soothes the savage beast.  My personal description of it all is "praying without words".  I don't sit when I play, I stand.  No matter how bad the pain is, my right foot becomes one with the sustain pedal and I "sway' the "pain" away.

I tried to conjure-up a jazzy mood while that damned chair rotated in unison with the lines of squiggly blue light during treatment, but I couldn't do it.  Jazz is partly together and partly jumbled and each segment made me more and more tired.  I just hope for a tumoral shutdown.  I'd be nice.

You know something?  It's good to know that there are physicians who are into more than the stiff white coats.  Most project sterile vibes.  You don't... and never have because you're relaxed in a progressive jazzy kind of way.  I shoulda known.  Parting quote Doc?

"The true, strong, and sound mind is the mind that can embrace equally great things and small."  Have a good one.

Sincerely,

C Jenkins
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ee commings:  "crazy enough to give daisies to"

Thanks

CCF Neuro MD
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I must say... "daisies"?  Thanks.  I want to let you know that since my ordeal in the chair, "crazy" indeed is the chosen term for what should have been an easy post-op.  I felt fine for several days even though I couldn't shake the headache and the more I thought about the deep cavernous sinus, the more I understood why.  1.)  the deep cavernous isn't the kind of sinus that pollen irritates... it's a blood reservoir  2.)  low rads are alien to everything, and 3.)  just being grateful that I'm not doomed to the same fate as my late-cousin provides reasoning enough to exist past the headache and move on.  I don't believe I'd do it again unless it was totally imperative, so... there you have it.  Again... thanks for being there. - C J
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your welcome.

CCF Neuro MD
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we need draws about you item.
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Dear sir



We would like to know about the prognosis, cure( treatment) of the disease caused by schwannoma. Kindly inform at my mail address. I am  a physician from south India.
***@****
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Dear Jayaramachandra:

It depends on the etiology of the schwannoma.

CCF Neuro MD
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My wife had a tumor on the tongue.  They didn't know it was malignant until after they romoved it.  I'm told it is a low-grade malignant schwannoma.

Since it wasn't suspected as being malignant at the time it was removed, the doctor removed a minimum of tissue surrounding it.  The pathologist says there is one mm of healthy tissue under the tumor.

The oncologist says ten mm is the safety margin, therefore he wants to begin radiation therapy.  The ENT who removed the tumor says that there is plenty of room for more surgery without affecting the tongue, should the tumor reoccur.  The onclolgist agrees there is room for more surgery.

My question is three-fold:

1. How important do you think this ten mm is with a low-grade tumor?

2. What are the odds of reoccurrence?  Would you expect reoccurrence at the same spot, on the tongue elsewhere, or somewhere else?

3.  Does having had one tumor make you more likely to have other forms of cancer?

I should note that she is a 59 year old Asian (Chinese) that is in otherwise good health.  Prior to this she never had any kind of surgery, and has never even been in a hospital.  She hasn't had an illness requiring medical attention in over 15 years.

Thanks.
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Hi Doctor,
For almost 4 years I have been suffering from constant pain in the papilla area in the roof of my mouth, behind my two front teeth, on the right side.
It goes up to the right side of my septum. It's hard to speak or eat.  The more I speak the worse it feels.  It's maddening. I had surgery on my nose.
Septoplasty.  It happened after this.

I cannot be on meds any longer, I have tried everything, you name it.
I am considering Septoplasty again, to possibly fix the problem, some ENT's say it may be a neuroma on my septum.  I am afraid that this problem may become worse, with the surgery.   In my spetum I feel a small rough edge, that feels like it has to come out, I blow my nose all the time because of this sensation, but of course nothing is there. The more I try to get rid of the feeling in my nose the worse the pain in my mouth is.  Ever heard of this?  Do you think surgery can correct this?  Is my nasoplatine nerve going to die because I have been living with this problem for so long.
Thank you
Nancy
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Hi Doctor,
For almost 4 years I have been suffering from constant pain in the papilla area in the roof of my mouth, behind my two front teeth, on the right side.
It goes up to the right side of my septum. It's hard to speak or eat.  The more I speak the worse it feels.  It's maddening. I had surgery on my nose.
Septoplasty.  It happened after this.

I cannot be on meds any longer, I have tried everything, you name it.
I am considering Septoplasty again, to possibly fix the problem, some ENT's say it may be a neuroma on my septum.  I am afraid that this problem may become worse, with the surgery.   In my spetum I feel a small rough edge, that feels like it has to come out, I blow my nose all the time because of this sensation, but of course nothing is there. The more I try to get rid of the feeling in my nose the worse the pain in my mouth is.  Ever heard of this?  Do you think surgery can correct this?  Is my nasoplatine nerve going to die because I have been living with this problem for so long.
Thank you
Nancy
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i have a schwannomanext to the 7th vertibre at the level of the kidney.  I have a burning sensation up and down my back going into my head.  Its almost like a sensation that is hard to describe.  Does this sound like the tumor is causing this symptom?  do you recommend removal?
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Four years ago I had major Septoplasty. After the surgery the whole roof of my mouth was numb.  Two months later I felt a funny vibrating sensation in the right side of my septum.  I complained of the sensation, something felt like it had to come out.  Three months later he cauterized the right side, inside of my nose.  One week later I developed a strange sensation in my mouth behind my two front teeth, more on the right side of the papilla area.  As the months went by it developed into burning pain, constant.  Touching the roof of my mouth when I spoke made the problem worse.  The sensation went up into the right side of my septum.  I have been living with this horrible sensation and pain for almost 4 years. I have tried every med there is.  Effexor seems to work somewhat.  I do not want to be on this med, the side effects hit me hard. In all this time there has been little improvement if any. The vibration sensation is gone and some of the burning pain.  But it is very sore behind my two front teeth, I can't touch it.  It makes it very difficult to speak and eat.  This continues up to the septum. And I feel like there is still something in there that has to come out.

A couple of ENT doctors seem to think it may be a neuroma.  They want to cut the septum and see what happens.  There is a small area on the septum that is projecting out, there is a white spot on that cartilage.  When you touch it, it feels sharp or rough, not smooth, but it does not hurt.

My pain Dr. injected nerve blocks, into the septum area, but the pain persisted.  

My question is have you ever heard of this?  Do you think this surgery can fix my problem?  Can it make my problem worse?

Do you have any suggestions or know where I can turn.  I will go to the ends of the earth to find someone who can help me.  This is very hideous, very depressing, like a slow death. I have been to all kinds of Drs. and had mri's. But as you know it is hard to see this small area.
It is the naso-palatine nerve that hurts.  The mri's show no inflammation.

Please help.
Desperate
Nancy
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I have been trying to find out info on schwannomas for some time.  About 18 years ago, I had a tumor under my tongue.  The oncologist said that it was a schwannoma and benign.  After surgery to excise it, the doctor told me there was a good chance that it would return.

About a month ago, I noticed another growth, this time on the side of my tongue.  I have an up-coming doctor's appt., but, like I said, I wanted to do more research on my own.

I guess my question is this:  from the info I have read, schwannomas usually occur in the brain.  I have also read accounts of them in the ear, but nothing about it showing up on tongues.  Was the doctor wrong?  This growth does seem to have a direct connection to my left ear (also the side of the tongue affected), which has been giving me problems (mostly itching) for years.  

Is there anyone out there that can help?  Thanks.  njk
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Dear NJK,

I think I may be able to clear things up a bit.  As I have said before, I am not a physician, just someone who has been dealing with schwannoma for years and years.

First, schwannoma can grow pretty much just about anywhere.  Why?  Because they are created by your own schwann cells and schwann cells are what your myelin sheath is all about.  Without them, your nerves wouldn't have any protection at all.  In the case of the stupid schwannoma, those cells zeroed in on a spot and conglomerated, so to speak.   Some are merely isolated and solitary, while others are networks of various sizes and lengths.

If a schwannoma is growing in or about your ear, it will itch... and itch for years because the nature of the tumor is that it grows s-l-o-w-l-y.  You can feel them in the tissue between the skin and bone.  They usually don't hurt until they press against larger nerves because the cells either spindle around the nerve or adhere as a bump on the side of it.  In either case, you have a tumor no matter what.  And they are benign unless they are threatening vital stuff like carotid arteries and such.

I hope this clears up your questions.  Like I said in previous posts... I'm not a physician, just a patient who has a strong belief in plenty of "educational understanding".  Good luck.  My email address is ***@**** if you want to clear up any more questions regarding schwannoma.

Sincerely,

Christine Jenkins
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I need info on schwannomas.  About 18 years ago, I had a schwannoma excised from under my tongue.  I seem to have it again, this time on the left side.  It hurts and irritates my left ear.  I can't locate the doc I saw; he may have retired.  Can you tell me if this is really a schwannoma, or what.

About five or six years ago, the roof of my mouth erupted in blisters.  That lasted about one month, and was treated with a numbing medicine I rinsed my mouth out with.  Can these two things be related?

I'd appreciate any info.

Thanks.
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Go to:   http://neurofibromatosis.org/cgi-bin/ice2-for.cgi     The world is @ your fingertips.

Schwannoma will return if any portion of the tumor is left behind during excision.  Can't comment on the mouth sores because I don't know.  I've never had any in all my 28 years of experience battling schwannoma.  But then I've never had any under my tongue either.

Hope this helps you.  Have a good one! - Christine


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A Schwannoma found in a biopsy of a mediastinal lymph gland, along with Sarcoidosis, suggests two separate conditions mixed into one?  What is going on? Specialist wrote them down, told me to call 1-800 lung number, which I did for info on Sarcoidosis, but having much difficulty with Schwannoma.  Have found a lot on Neurofibroma, but scant stuff on the Schwannoma, except a lot with the acoustical or vesticular kind. Enjoyed reading the above comments, and glad to hear of the musical inclinations.  My primary care physician plays a cello in a symphony orchestra, and I tell him that is good for his soul.  I, too, think many doctors are very human.  Like the rest of us.  Where can I find more information on other Schwannomas, and how they spread, if they do, and how quickly.  Somehow, I think this is an emerging area of research, not too well documented yet.  Thank you.  P.S. Non-malignant biospy was a blessing, but these cranial operations sound gruesome for one already sufficed with pain.  Best wishes, M.Joye
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A Schwannoma found in a biopsy of a mediastinal lymph gland, along with Sarcoidosis, suggests two separate conditions mixed into one?  What is going on? Specialist wrote them down, told me to call 1-800 lung number, which I did for info on Sarcoidosis, but having much difficulty with Schwannoma.  Have found a lot on Neurofibroma, but scant stuff on the Schwannoma, except a lot with the acoustical or vesticular kind. Enjoyed reading the above comments, and glad to hear of the musical inclinations.  My primary care physician plays a cello in a symphony orchestra, and I tell him that is good for his soul.  I, too, think many doctors are very human.  Like the rest of us.  Where can I find more information on other Schwannomas, and how they spread, if they do, and how quickly.  Somehow, I think this is an emerging area of research, not too well documented yet.  Thank you.  P.S. Non-malignant biospy was a blessing, but these cranial operations sound gruesome for one already sufficed with pain.  Best wishes, M.Joye
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A Schwannoma found in a biopsy of a mediastinal lymph gland, along with Sarcoidosis, suggests two separate conditions mixed into one?  What is going on? Specialist wrote them down, told me to call 1-800 lung number, which I did for info on Sarcoidosis, but having much difficulty with Schwannoma.  Have found a lot on Neurofibroma, but scant stuff on the Schwannoma, except a lot with the acoustical or vesticular kind. Enjoyed reading the above comments, and glad to hear of the musical inclinations.  My primary care physician plays a cello in a symphony orchestra, and I tell him that is good for his soul.  I, too, think many doctors are very human.  Like the rest of us.  Where can I find more information on other Schwannomas, and how they spread, if they do, and how quickly.  Somehow, I think this is an emerging area of research, not too well documented yet.  Thank you.  P.S. Non-malignant biospy was a blessing, but these cranial operations sound gruesome for one already sufficed with pain.  Best wishes, M.Joye
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Dear Doc RPS,

I'm staring at a rather strange phenomenon.  Ever heard (and I know you have) of the rare spin-off known as Schwannomatosis?  Well... that's what I have.  Everything I have is centered on CN's 5 and 7.  No place else.  I guess I'm rare in the sense that the partner of the "pegger" of Schwannomatosis made the dx.  What I have is a rather large trigeminal schwannoma that ain't getting any smaller.  In fact... I'm seeing double a lot, so it is wreaking some havoc.  Many, many, many sessions of radiation therapy (surgery) have been suggested and I'm sitting at my keyboard a lot these days.  I've made a rather large jump in medications, but refuse to allow any jump at all in the MS-Contin.  I'd rather use MSIR as needed.  Can you give me any info on the success of radiation?  Where I used to be confident, I'm now a little on the scared side of the tracks.  Any support goes straight to my heart, doc.

Sincere thanks,

Christine
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