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Mother with multiple meningiomas
My mother was diagnosed last year with multiple meningiomas. I have 6 large cafe au lait spots (upper arms, 1 into armpit, and both buttocks with some freckling into groin). I have been doing alot of research about NF 1 and 2, there is alot of conflicting information out there about the diagnosing/complications. Physically, I don't have many problems but I do have intermittent tinnitus that has started over the last few years. My question is do I need any imaging or genetic testing to see if I have NF2? My mother is the only person in her family to have meningiomas, and I am the only child (I have 4 siblings) that have cafe au lait spots. Thank you.
We are healed of a suffering only by experiencing it to the full. I once told you that my strength is made perfect in weakness. I adore your demeanor. You know how to address a patient and that's a gift only a chosen few possess. I believe it was Holmes who said, "The world is always ready to receive talent with open arms." Life is too late tomorrow... you have to live today. We are the architects of our own future. (So... I'll chisle my face a little in order to make tomorrow a little prettier.) "And flights of angels sing they to thy rest!" Shakespeare-Hamlet.
Enough! Writers tend to get a little carried away... so, practice on good doctor. I'd love to meet you and shake your hand (and show you all my befores and afters). Have a good one!
Christine
Enough! Writers tend to get a little carried away... so, practice on good doctor. I'd love to meet you and shake your hand (and show you all my befores and afters). Have a good one!
Christine
Dear Christine:
Disease is not a fun game and those who have to endure it seem better than the rest of us. I am sorry that you have had to endure the process of disease. It is impossible for anyone to acutally tell you anything about adversity as only those who go through it belong to the select and actually privileged group who walk through life battling it instead of giving up or in to the turmoil of pain. There are many little bells ringing in heaven as your struggle with your life ("This wonderful life"). We are better for your struggle.
CCF Neuro MD
Disease is not a fun game and those who have to endure it seem better than the rest of us. I am sorry that you have had to endure the process of disease. It is impossible for anyone to acutally tell you anything about adversity as only those who go through it belong to the select and actually privileged group who walk through life battling it instead of giving up or in to the turmoil of pain. There are many little bells ringing in heaven as your struggle with your life ("This wonderful life"). We are better for your struggle.
CCF Neuro MD
Dear Doc RPS:
It's hard to have facial paralysis. It's doubly hard when there is a network of underlying demons making matters a whole lot worse. I've already had 2 canthoplasty resections done to my left eye and numerous schwannoma excised from various locations, none of which contributed to the paralysis. GBS began my journey, neurofibromatosis created a tumoral mess beneath my skin and the craniotomy last May made a huge contribution concerning paralysis. Your advice is well-taken, Doc... but gravity is vertical, and 28 years of it topped with the latest contribution has jerked my emotional chain. I went from an eye enhanced by canthoplasty to one that barely closes. I went from a lower lip that wasn't paralyzed and an upper lip that was barely paralyzed to lips that can't hold fluid (lower) or bite a sandwich (upper) because it doesn't draw back over my teeth. I bite it and the sandwich, so I don't eat them anymore. If a "lift" aggravates, then I'll live with it. I live with it anyhow. I want you to know that I trust in what you've advised, but emotionally I can't live with what I see. I'm 46, don't look my age other than the usual mild laugh lines. That's how they look on the right side. The left side really does look and feel horrid. My emotional well-being is important. I appreciate all that you've done for me in the past. Nobody is better than you. Keep it up, Doc. And as for the mexiletine... it works for me. I had to go off of it to realise that I needed it. Again... thanks.
Sincerely,
Christine
It's hard to have facial paralysis. It's doubly hard when there is a network of underlying demons making matters a whole lot worse. I've already had 2 canthoplasty resections done to my left eye and numerous schwannoma excised from various locations, none of which contributed to the paralysis. GBS began my journey, neurofibromatosis created a tumoral mess beneath my skin and the craniotomy last May made a huge contribution concerning paralysis. Your advice is well-taken, Doc... but gravity is vertical, and 28 years of it topped with the latest contribution has jerked my emotional chain. I went from an eye enhanced by canthoplasty to one that barely closes. I went from a lower lip that wasn't paralyzed and an upper lip that was barely paralyzed to lips that can't hold fluid (lower) or bite a sandwich (upper) because it doesn't draw back over my teeth. I bite it and the sandwich, so I don't eat them anymore. If a "lift" aggravates, then I'll live with it. I live with it anyhow. I want you to know that I trust in what you've advised, but emotionally I can't live with what I see. I'm 46, don't look my age other than the usual mild laugh lines. That's how they look on the right side. The left side really does look and feel horrid. My emotional well-being is important. I appreciate all that you've done for me in the past. Nobody is better than you. Keep it up, Doc. And as for the mexiletine... it works for me. I had to go off of it to realise that I needed it. Again... thanks.
Sincerely,
Christine
Dear Christine:
I don't agree witht he schwannoma and the face lift as the schwannoma would likely not be affected by the lift, if anything the possibility of the scar tissue and immune response to surgery would aggrevate the tumor is likely higher. Mexitiline has been used for pain and some dystonias. The results are mixed.
CCF Neuro MD
I don't agree witht he schwannoma and the face lift as the schwannoma would likely not be affected by the lift, if anything the possibility of the scar tissue and immune response to surgery would aggrevate the tumor is likely higher. Mexitiline has been used for pain and some dystonias. The results are mixed.
CCF Neuro MD
Dear Doc:
No need to be anal. Nerve **** has been the story of my life. The latest dilemna is just another scene in "My Neuro." I'm glad I live today. I'm sure you know what I would have done had I been born 100 years ago. Ever heard of "the Tallahatchee Bridge"? Billy Ray McCallister wouldn't have had to throw me off. I probably would have jumped. Why? There would have been no hope for someone with my problems. Pain, more-than-likely would have made a madwoman out of me. And let's not even talk about NF-2 and schwannoma. Left untreated, the visual would have scared children. Incidently, I'm having cartiledge from my ear implanted in my lower left eyelid to build it up even with my right. At the same time, I'm having a one-sided face-life to rid myself of the droop. Ah, the oculoplasty opthlalmologist! Where would we be without them? (100 yrs ago... scaring kids) Think about me on 2/7/00. That's the day, Doc. And something tells me that reducing eyelid and facial laxity will help support existing small schwannoma thereby reducing trigeminal facial pain induced by gravity. What do you think? Also, you never responded to my questions regarding the drug Mexiletine.
Yours,
Christine
No need to be anal. Nerve **** has been the story of my life. The latest dilemna is just another scene in "My Neuro." I'm glad I live today. I'm sure you know what I would have done had I been born 100 years ago. Ever heard of "the Tallahatchee Bridge"? Billy Ray McCallister wouldn't have had to throw me off. I probably would have jumped. Why? There would have been no hope for someone with my problems. Pain, more-than-likely would have made a madwoman out of me. And let's not even talk about NF-2 and schwannoma. Left untreated, the visual would have scared children. Incidently, I'm having cartiledge from my ear implanted in my lower left eyelid to build it up even with my right. At the same time, I'm having a one-sided face-life to rid myself of the droop. Ah, the oculoplasty opthlalmologist! Where would we be without them? (100 yrs ago... scaring kids) Think about me on 2/7/00. That's the day, Doc. And something tells me that reducing eyelid and facial laxity will help support existing small schwannoma thereby reducing trigeminal facial pain induced by gravity. What do you think? Also, you never responded to my questions regarding the drug Mexiletine.
Yours,
Christine
Dear Christine:
Yes, neurontin should be as effective as the others mentioned. Just to be anal about C V. Only division I runs within the cavernous sinus, the II branch is actually outside the cavernous sinus to the lateral aspect.
CCF Neuro MD
Yes, neurontin should be as effective as the others mentioned. Just to be anal about C V. Only division I runs within the cavernous sinus, the II branch is actually outside the cavernous sinus to the lateral aspect.
CCF Neuro MD
Dear CCF Neuro Doc RPS:
Thanks for the obituary- a course on Cell Death 401. Ha. I needed it otherwise I wouldn't have asked. So, my deep cavernous tumor is more than likely "deceased" (according to Garp). Humor is needed in times like these. Music takes a back seat.
As for scar tissue and nerve impingement? I should have known better. Should have "slowed down- life is long" way before you advised me to do so. I went "out on a limb" when I shoulda been hugging the tree instead. Man! I felt really good back then, but you know the old saying "we are our own worst enemy".
So? What remains on the roster of neurological "pain" afflictions? How about I tell you, Doc? (1) Tic Doloreaux (2) Trigeminal Neuralgia (3) or Painful tic (4) all 4 of these bad boys are one in the same. And the answer is? #4. The patient complained naught of this pain before stereotactic radiosurgery was performed on her deep cavernous sinus through which run cranial nerves 3, 4, 5, and 6- with 2 divisions of #5... one for each side of the face. Isn't #5 the trigeminal nerve? Yes.
I knew you were right when you said that it appeared #5 was injured and radiosurgery was probably the culprit. I now have "triggered pain", characteristic of tic doloreaux. Med options are tegretol or dilantin, and I won't take either. I can't. Tegretol resulted in liver pain, dilantin in gum problems.
Have you ever heard of the drug Mexiletine and its internal numbing qualities? If so, what is considered a high dose? Wouldn't Neurontin do the same job as tegretol or dilantin? (you know me and neurontin... I'd rather fight than switch) As for mexiletine, I take 900mgs of it a day and would take more because it does do a job on nerve pain. Trust me on this one. It does. (150mgs guarantees a decent nights sleep)
Let me go play "Taps". It's dedicated to my dead cells, etc.
Sincerely,
Christine
Thanks for the obituary- a course on Cell Death 401. Ha. I needed it otherwise I wouldn't have asked. So, my deep cavernous tumor is more than likely "deceased" (according to Garp). Humor is needed in times like these. Music takes a back seat.
As for scar tissue and nerve impingement? I should have known better. Should have "slowed down- life is long" way before you advised me to do so. I went "out on a limb" when I shoulda been hugging the tree instead. Man! I felt really good back then, but you know the old saying "we are our own worst enemy".
So? What remains on the roster of neurological "pain" afflictions? How about I tell you, Doc? (1) Tic Doloreaux (2) Trigeminal Neuralgia (3) or Painful tic (4) all 4 of these bad boys are one in the same. And the answer is? #4. The patient complained naught of this pain before stereotactic radiosurgery was performed on her deep cavernous sinus through which run cranial nerves 3, 4, 5, and 6- with 2 divisions of #5... one for each side of the face. Isn't #5 the trigeminal nerve? Yes.
I knew you were right when you said that it appeared #5 was injured and radiosurgery was probably the culprit. I now have "triggered pain", characteristic of tic doloreaux. Med options are tegretol or dilantin, and I won't take either. I can't. Tegretol resulted in liver pain, dilantin in gum problems.
Have you ever heard of the drug Mexiletine and its internal numbing qualities? If so, what is considered a high dose? Wouldn't Neurontin do the same job as tegretol or dilantin? (you know me and neurontin... I'd rather fight than switch) As for mexiletine, I take 900mgs of it a day and would take more because it does do a job on nerve pain. Trust me on this one. It does. (150mgs guarantees a decent nights sleep)
Let me go play "Taps". It's dedicated to my dead cells, etc.
Sincerely,
Christine
Dear Christine:
Radiation is a toxic medium that causes cell death. It causes muscles to become necrotic and die. It is the same effect on tumor cells and that is why it is sometimes used. Scar tissue can cause pain. The scar can impinge on the nerve and also irritate it.
CCF Neuro MD
Radiation is a toxic medium that causes cell death. It causes muscles to become necrotic and die. It is the same effect on tumor cells and that is why it is sometimes used. Scar tissue can cause pain. The scar can impinge on the nerve and also irritate it.
CCF Neuro MD
I'm no hypochondriac. In fact, I'm far from being one. Information is a valuable commodity when life is continuously rocked by pain. I asked about radiation induced myelitis. I might be grasping for straws and then again... it doesn't hurt to ask
My final question is this:
Could a scar tissue problem forming on the floor of my left orbit be causing the majority of my pain? After all, I did have a pretty intrusive caniotomy last May. Eye movement is painful and the eyeball itself appears to be bulging again. Thanks. - Christine
My final question is this:
Could a scar tissue problem forming on the floor of my left orbit be causing the majority of my pain? After all, I did have a pretty intrusive caniotomy last May. Eye movement is painful and the eyeball itself appears to be bulging again. Thanks. - Christine
Dear CCF Neuro (P) "Doc", RPS:
Please define "radiation induced myelitis". CCF Neuro MD GS made a statement that raised my curiosity. I didn't want to ask him because he'd jump on me about "Posting" properly like he did that woman. Bedside manner... he possesses not. Sterile vibes? He doth project.
His exact words were (quote), "Unfortunately radiation induced injury can be very serious and may not resolve out." You are vaguely familiar with my reason for this inquiry. He, however, is not. I'd appreciate a definitive reply from the dynamite doc.
Sincere thanks,
Christine
Please define "radiation induced myelitis". CCF Neuro MD GS made a statement that raised my curiosity. I didn't want to ask him because he'd jump on me about "Posting" properly like he did that woman. Bedside manner... he possesses not. Sterile vibes? He doth project.
His exact words were (quote), "Unfortunately radiation induced injury can be very serious and may not resolve out." You are vaguely familiar with my reason for this inquiry. He, however, is not. I'd appreciate a definitive reply from the dynamite doc.
Sincere thanks,
Christine
Dear Ms. Jenkins:
As you know, NF-1 is on chromosome 17 and NF-2 is on chromosome 22. Both are autosomal dominant inherited. So, birth order would not be part of the syndrome.
CCF Neuro MD
As you know, NF-1 is on chromosome 17 and NF-2 is on chromosome 22. Both are autosomal dominant inherited. So, birth order would not be part of the syndrome.
CCF Neuro MD
Dear Doc RPS:
I know she meant that she is the only child with cafe au lait spots regarding her siblings. I was curious as to whether she was born 1st, 2nd. 3rd, 4th, or 5th? I don't know if I ever mentioned that I was born 5th in my family. None of my siblings has the disease. Likewise, my late cousin was also born 5th in line... none of his siblings have it either. Just curious. Genetically speaking, it sure is strange that my mother and her sister produced both cases of NF in the same birth pattern? He had type 1 and I have type 2. And what is even stranger still is the fact that both women were in their mid to late 30's when they had us.
In the name of research... do a survey. If there's a connection, NF might could be erradicated. Now... wouldn't that be nice?
Christine
I know she meant that she is the only child with cafe au lait spots regarding her siblings. I was curious as to whether she was born 1st, 2nd. 3rd, 4th, or 5th? I don't know if I ever mentioned that I was born 5th in my family. None of my siblings has the disease. Likewise, my late cousin was also born 5th in line... none of his siblings have it either. Just curious. Genetically speaking, it sure is strange that my mother and her sister produced both cases of NF in the same birth pattern? He had type 1 and I have type 2. And what is even stranger still is the fact that both women were in their mid to late 30's when they had us.
In the name of research... do a survey. If there's a connection, NF might could be erradicated. Now... wouldn't that be nice?
Christine
Dear Ms. Jenkins:
I think she means that of the children, she is the only one with cafe au lait spots.
CCF Neuro MD
I think she means that of the children, she is the only one with cafe au lait spots.
CCF Neuro MD
Dear CCF Neuro (P) "Doc", RPS:
I do have spasms. In the past, I labeled them "Phantoms of Pain" because they would ride in very un-announced, wreak a tremendous amount of havoc, then quickly disappear and leave me virtually exhausted. That is the reason why I take Baclofen in the first place. You know best, Doc.
I'm curious about something Laurie mentioned in her original post. She said, "...and I am the only child (I have 4 siblings) that have cafe au lait spots." Which child is she in the sequence of all 5?
Sincerely,
Christine
I do have spasms. In the past, I labeled them "Phantoms of Pain" because they would ride in very un-announced, wreak a tremendous amount of havoc, then quickly disappear and leave me virtually exhausted. That is the reason why I take Baclofen in the first place. You know best, Doc.
I'm curious about something Laurie mentioned in her original post. She said, "...and I am the only child (I have 4 siblings) that have cafe au lait spots." Which child is she in the sequence of all 5?
Sincerely,
Christine
Dear Ms. Jenkins:
No, baclofen is for spasm not pain. Although it theoretically will help pain some what as it is a GABA-B inhibitor and by reducing muscle spasm one reduces pain.
Sincerely,
CCF Neuro MD
No, baclofen is for spasm not pain. Although it theoretically will help pain some what as it is a GABA-B inhibitor and by reducing muscle spasm one reduces pain.
Sincerely,
CCF Neuro MD
Dear CCF Neuro (P) "Doc", RPS:
Please accept my deepest gratitude for your swift response, although I've been mentally frustrated ever since. The thinking process can be a pain all by itself, especially when it concerns the deepest part of ones brain. Unfortunately, both matters sit side by side physiologically.
Transitory, eh? I should hope so, but with concern focused upon a theoretical chance for inflammatory changes. The chance is two-fold in that I control one half by what I do, such as lifting or moving heavy objects. This surgery is really no different than the craniotomy, with the exception of visual perception. What you can't see CAN hurt you. During my recovery from the craniotomy, you said to me, "...slow down, life is long." (a variation of Cicero)
I did have an immediate MRI and a CT scan and intend to nab them from Radiology on the way to see my neurologist. Better that I hand-carry them with the exception of the post MRI. It will be sent directly to my neurosurgeon. We'll have them all, now won't we? Inquiring minds want to know. Wasn't it Tennyson in Ulysses who said, "I am a part of all that I have met?"
I have consistent fluctuating eye pain in association with the intensity of light patterns (3, 4, and 6). I believe 5 was injured during surgery. I have to squat instead of bend-over to pick something up, and I sleep pretty-well propped-up with pillows because... in both cases, gravity is vertical and takes its toll.
Here's my Rx list: Neurontin 300mg 3-3x day/ MS-Contin 15mg 2-3x day/ Baclofen 20mg 1-3x day/ Mexiletine 150mg 2-3x day.
Question: Would it be wise to elevate the Baclofen in 10mg increments as needed for eye stress and muscle pain? I've been patching it up a lot (like right now) in an effort to shut-down those symptoms. Plus... I weep a lot, based on the CTJ System of estimated daily un-regulated and un-wanted spells of pain reommended by the National Institute of Dispicable Dilemnas. NF-2 is just that. Parting quote: "I find, by experience, that the mind and the body are more than married, for they are most intimately united; and when the one suffers, the other sympathizes."
Sincerely,
Christine
Please accept my deepest gratitude for your swift response, although I've been mentally frustrated ever since. The thinking process can be a pain all by itself, especially when it concerns the deepest part of ones brain. Unfortunately, both matters sit side by side physiologically.
Transitory, eh? I should hope so, but with concern focused upon a theoretical chance for inflammatory changes. The chance is two-fold in that I control one half by what I do, such as lifting or moving heavy objects. This surgery is really no different than the craniotomy, with the exception of visual perception. What you can't see CAN hurt you. During my recovery from the craniotomy, you said to me, "...slow down, life is long." (a variation of Cicero)
I did have an immediate MRI and a CT scan and intend to nab them from Radiology on the way to see my neurologist. Better that I hand-carry them with the exception of the post MRI. It will be sent directly to my neurosurgeon. We'll have them all, now won't we? Inquiring minds want to know. Wasn't it Tennyson in Ulysses who said, "I am a part of all that I have met?"
I have consistent fluctuating eye pain in association with the intensity of light patterns (3, 4, and 6). I believe 5 was injured during surgery. I have to squat instead of bend-over to pick something up, and I sleep pretty-well propped-up with pillows because... in both cases, gravity is vertical and takes its toll.
Here's my Rx list: Neurontin 300mg 3-3x day/ MS-Contin 15mg 2-3x day/ Baclofen 20mg 1-3x day/ Mexiletine 150mg 2-3x day.
Question: Would it be wise to elevate the Baclofen in 10mg increments as needed for eye stress and muscle pain? I've been patching it up a lot (like right now) in an effort to shut-down those symptoms. Plus... I weep a lot, based on the CTJ System of estimated daily un-regulated and un-wanted spells of pain reommended by the National Institute of Dispicable Dilemnas. NF-2 is just that. Parting quote: "I find, by experience, that the mind and the body are more than married, for they are most intimately united; and when the one suffers, the other sympathizes."
Sincerely,
Christine
Dear Ms Jenkins:
Since your pain was resolving somewhat before the radiosurgery, I doubt that it is a return of your old pain. The most likely thing is that the radiosurgery was the culprit. In the cavernous sinsue runs the cranial nerves 3, 4 and 6 with two divisions of 5. So one could get facial pain if cranial nerve 5 was injured by the radiosurgery. Cranial nerve 3, 4, and 6 are eye muscle nerves mostly, but cranial nerve 3 carries some parasympathetic input to the iris and lens. So, there is a possiblility of eye pain. I would think that the pain would be transitory but how long would be an open question. There is a theoretical chance for inflammatory changes to persist in the sinus area and could be long lasting and irritate the cranial nerves.
I would ask your neurologist what did the immediate MRI show (if they did one) or if there will be another MRI of the area to view the aftermath of the surgery and the schwannoma resection. Then, they should be able to tell you the extent of the inflammatory reaction.
I am not sure what to tell you about the pain. I think that I would go the neurontin route first, before the morphine to see if it will control the pain. But, you might need a tad to tide you over.
Sincerely,
CCF Neuro MD
Since your pain was resolving somewhat before the radiosurgery, I doubt that it is a return of your old pain. The most likely thing is that the radiosurgery was the culprit. In the cavernous sinsue runs the cranial nerves 3, 4 and 6 with two divisions of 5. So one could get facial pain if cranial nerve 5 was injured by the radiosurgery. Cranial nerve 3, 4, and 6 are eye muscle nerves mostly, but cranial nerve 3 carries some parasympathetic input to the iris and lens. So, there is a possiblility of eye pain. I would think that the pain would be transitory but how long would be an open question. There is a theoretical chance for inflammatory changes to persist in the sinus area and could be long lasting and irritate the cranial nerves.
I would ask your neurologist what did the immediate MRI show (if they did one) or if there will be another MRI of the area to view the aftermath of the surgery and the schwannoma resection. Then, they should be able to tell you the extent of the inflammatory reaction.
I am not sure what to tell you about the pain. I think that I would go the neurontin route first, before the morphine to see if it will control the pain. But, you might need a tad to tide you over.
Sincerely,
CCF Neuro MD
To CCF Neuro (P) "Doc" RPS:
First, I'm elated that Laurie managed to secure a post dedicated to Neurofibromatosis. There hasn't been one since NF and HRT. Thank you Laurie... and please do what Doc RPS advised. It's very important to know exactly what type you have so you can gear research to your personal cause. I have NF-2 and dealing with it is a task dedicated to the quality of life.
Doc? My whole life has been strange. GBS. HRT providfing food for tumor growth. A huge craniotomy, and now... Stereotactic Radiosurgery, which is the subject for discussion.
I agreed to have radiosurgery after my neurosurgeon phoned me about taking care of the schwannoma located in the deep cavernous sinus. It was done on 11/17/99. Prior to that, I had a pretty extensive craniotomy done on 5/20/99 for the removal of schwannoma on the left temporal lobe, including the left orbital floor and optic nerve. Impingement was excessive. My recovery went fine. Pre-surgery pain was more than 75%, post-surgery pain reduced to 25%. I was on top of the world. Almost free of pain I began the sweet task of reducing my pain meds. I managed to kick Ritalin out of my life along with half of the Morphine Sulphate.
On 11/17, radiosurgery was performed... and I've been in pain ever since. It's as if I stepped back in time and am once again fighting the Battle of Pain. After years of waiting for a glorious "new day" in the land of semi-free torment, stereotactic rads burned the newly-formed "state" right back into the very ground from whence it sprung. I don't want to go back up on the morphine. Morpheus is mean, and so is its focusing sidekick Methylphenidate.
Are we so advanced as to believe we know it all? A short life minus pain is a far-cry more humane than a long one constantly at war with itself. NF-2 is just that. There seems to be no middle ground to speak of on the road to elephantmanism. We push on in disfiguring pain. For myself? I evaluate the outcome of plastic surgeries. If schwannoma is left untreated between the skin and bone... it grows grotesque. If left untreated within the cranium... well Doc, you answer that one.
Back to the deep cavernous blood reservoir. When they zapped the schwannoma something happened and now I'm in pain all over again. My questions are:
1.) What gives here?
2.) What is housed in and around the cavernous sinus that could have been sparked into action?
3.) Could the surgery have done more harm than good? I mean, considering the slow growth characteristics of schwannoma and my age (46)?
4.) Might this all be a result of scar tissue from the craniotomy? I have areas of facial numbness that are "waking up"?
I see my neurosurgeon soon... and I want to be ready for it. And quite frankly Doc, your opinion means a lot. I sure welome the advice. Thanks for everything, ("My strength is made perfect in weakness.")
Sincerely,
Christine Jenkins
First, I'm elated that Laurie managed to secure a post dedicated to Neurofibromatosis. There hasn't been one since NF and HRT. Thank you Laurie... and please do what Doc RPS advised. It's very important to know exactly what type you have so you can gear research to your personal cause. I have NF-2 and dealing with it is a task dedicated to the quality of life.
Doc? My whole life has been strange. GBS. HRT providfing food for tumor growth. A huge craniotomy, and now... Stereotactic Radiosurgery, which is the subject for discussion.
I agreed to have radiosurgery after my neurosurgeon phoned me about taking care of the schwannoma located in the deep cavernous sinus. It was done on 11/17/99. Prior to that, I had a pretty extensive craniotomy done on 5/20/99 for the removal of schwannoma on the left temporal lobe, including the left orbital floor and optic nerve. Impingement was excessive. My recovery went fine. Pre-surgery pain was more than 75%, post-surgery pain reduced to 25%. I was on top of the world. Almost free of pain I began the sweet task of reducing my pain meds. I managed to kick Ritalin out of my life along with half of the Morphine Sulphate.
On 11/17, radiosurgery was performed... and I've been in pain ever since. It's as if I stepped back in time and am once again fighting the Battle of Pain. After years of waiting for a glorious "new day" in the land of semi-free torment, stereotactic rads burned the newly-formed "state" right back into the very ground from whence it sprung. I don't want to go back up on the morphine. Morpheus is mean, and so is its focusing sidekick Methylphenidate.
Are we so advanced as to believe we know it all? A short life minus pain is a far-cry more humane than a long one constantly at war with itself. NF-2 is just that. There seems to be no middle ground to speak of on the road to elephantmanism. We push on in disfiguring pain. For myself? I evaluate the outcome of plastic surgeries. If schwannoma is left untreated between the skin and bone... it grows grotesque. If left untreated within the cranium... well Doc, you answer that one.
Back to the deep cavernous blood reservoir. When they zapped the schwannoma something happened and now I'm in pain all over again. My questions are:
1.) What gives here?
2.) What is housed in and around the cavernous sinus that could have been sparked into action?
3.) Could the surgery have done more harm than good? I mean, considering the slow growth characteristics of schwannoma and my age (46)?
4.) Might this all be a result of scar tissue from the craniotomy? I have areas of facial numbness that are "waking up"?
I see my neurosurgeon soon... and I want to be ready for it. And quite frankly Doc, your opinion means a lot. I sure welome the advice. Thanks for everything, ("My strength is made perfect in weakness.")
Sincerely,
Christine Jenkins
Thank you very much for such a quick reply, it has alleviated my worries.
Dear Laurie:
Neurofibromatosis 1 or 2 are genetic condtions. Type 1 is associated with multiple cafe au lait spots (>6, of a certain diameter), axillary freckling, optic gliomas, changes in the sphenoid bone, Lisch nodules, and neural fibromas. Type 2 is associated with bilateral cranial nerve 8 schwannomas, meningomas, and gliomas. Each disease is inherited as a autosomal dominant and is located on a different chromosome, 17 for NF-1 and 22 for NF-2. By what you are telling me, I doubt that you have NF-2. However, a simple neuroimage of your brain will tell you. But, if your mother doesn't have bilateral CN 8 schwannomas, then you likely do not have NF-2. But, the only way to know for sure is to have imaging of you head.
There are genetic testing in a few labs and I think that Athenia Labs does these commerically,
Sincerely,
CCF Neuro MD
Neurofibromatosis 1 or 2 are genetic condtions. Type 1 is associated with multiple cafe au lait spots (>6, of a certain diameter), axillary freckling, optic gliomas, changes in the sphenoid bone, Lisch nodules, and neural fibromas. Type 2 is associated with bilateral cranial nerve 8 schwannomas, meningomas, and gliomas. Each disease is inherited as a autosomal dominant and is located on a different chromosome, 17 for NF-1 and 22 for NF-2. By what you are telling me, I doubt that you have NF-2. However, a simple neuroimage of your brain will tell you. But, if your mother doesn't have bilateral CN 8 schwannomas, then you likely do not have NF-2. But, the only way to know for sure is to have imaging of you head.
There are genetic testing in a few labs and I think that Athenia Labs does these commerically,
Sincerely,
CCF Neuro MD
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