Sorry, Jo!
Question:
Your post was one of many which I read and say "WOW" but never bother to reply to – shame on me! My two lame but true excuses are: 1) my reply function doesn’t work on my newsgroup (hence my new subject lines each time) 2) to be honest, I didn’t know what to say except "WOW! BEST OF LUCK TO YOU!" and I figured you’d be flooded with a million other posts of that sort, as popular as you are on this ng. I’m sorry you weren’t flooded with them! I hope the botox gives you the all the results you want and none that you don’t. Actually, the day I was diagnosed, (and the docs said he could hear me yelling uncontrollably 2 rooms down!) one of the docs suggested botox if the meds didn’t work. But later the other one emphasized the "last resort" part and implicitly chastized the other one for bringing it up so soon. (At the time to me it sounded preferable to neuroleptics). He said I had so many tics all over that they’d have to completely paralyze me to stop them all. He said that if my coprolalia became pervasively loud and uncontrollable, they’d consider botoxing my vocal cords. But it sounds like your case is one in which even my conservative doctor would agree to trying botox. I was told that the worst (or at least most common) problem was that the voice would become permanently altered, making it difficult to speak. I hope that doesn’t interfere with your counseling, but I doubt it would – you’d find away around it! Anyway, I’ll say it again: WOW! BEST OF LUCK TO YOU!! Alex — For info about this service, see http://www.twwells.com/anon/ or e-mail: h…@anon.twwells.com — for an automatically returned help message ad…@anon.twwells.com – for the service’s administrator ano…@anon.twwells.com — anonymous mail to the administrator
Response:
Dear Alex and the others who have responded: Thank you all. I didn’t really mean to elicit apologies or excuses; I DO appreciate how much everyone is doing and coping with in their respective lives. I was more implying that those who DO read the posts and seem to be on AST every day, who have the time and energy to post a lot about other things, did not see fit to respond as people have done very thoughtfully now. Some of you who e-mailed me privately have asked very good questions, even giving me a few new questions to ask and to think about prior to the shot! So, thanks again, and I am willing to share what I learn as I learn it. To answer a few questions all together for everyone: 1) Joseph Jankovic, M.D. at Texas Medical Center in Houston, TX has written a paper about it; I’m in the process of getting it. 2) This *IS* a last resort for me to some voluntary extent – I can be heard up to 1/3 of a MILE away sometimes. 3) There is not supposed to be a risk for permanent change in vocal chords or ability to speak. 4) This is *NOT* the same nor does it carry the same serious risks as cingulotomy or ANY brain surgery that others have elected for TS. 5) The results ARE temporary, lasting between 3-6 months, and then if I choose, I can get another shot. 6) I will NOT need anesthesia, it is a local shot. 7) Yes, my voice may be hoarse, but softer, with lessened or inability to produce the volume. 
Becoming mute is not likely, given the small amount of Botulinum toxin used for this. 9) Difficulty swallowing is NOT expected to be a side effect, as it sometimes is for people with spasmodic dysphonia who get Botox injections into their vocal chords. 10) While St. John’s Wart may help some with vocal tics, I have strong feelings about not taking a ‘fake’ and ‘unregulated’ Serotonin booster. My feeling is that if one needs and benefits from altering Serotonin or other brain chemicals, it should be with a drug that is prescribed by a treating physician, with consistent dosaging. I am so sensitive and refractory that in my case it would be unwise to play around with OTC potions that mimic what the drugs do, and have so much variability without a doctor behind it to help me if/when I need it. I recognize and appreciate that it works for some….. 11) I do not yet know about possible damage to my chords if I cannot produce the volume, yet still ‘try’ to yell due to the neurologic ‘urge’, nor can I predict how, if, or where the energy or ‘need’ to tic will re-emerge or re-locate. 12) I also don’t know if the significantly reduced ability to tic loudly will cause me to talk constantly, albeit softly, in order to ‘get it out,’ ‘feel right’, or compensate. Also, I don’t know if my motor tics or others will increase for these same reasons. 13) I’m trying to anticipate the new accommodations and coping strategies I might need, such as: a) needing a microphone for my lectures and presentations b) needing amplification on the telephone c) being heard and understood by HH (hard of hearing) ppl., esp. on the phone. d) being frustrated by simple things, like not being able to call my dogs from another room, or my boyfriend, or say hi to neighbors across the way. e) I’m wondering about not being able to sing (something I’m probably bad at but love) or even laugh. f) I’m hoping I don’t start ’swallowing’ my sneezes (have you ever seen those petite little women who politely sneeze and go "atch-yew!" like a little mouse? These are the same women who hold in all bodily sounds, and then become bitchy because, hey, it has to come out somehow!!! ha ha So, that’s more info…..i hope this answers some questions…. Now I’m going huckleberry picking!!! Jo – Hide quoted text — Show quoted text -Alex Neilsen wrote: > Your post was one of many which I read and say "WOW" but never bother to > reply to – shame on me! My two lame but true excuses are: 1) my reply > function doesn’t work on my newsgroup (hence my new subject lines each time) > 2) to be honest, I didn’t know what to say except "WOW! BEST OF LUCK TO > YOU!" and I figured you’d be flooded with a million other posts of that > sort, as popular as you are on this ng. I’m sorry you weren’t flooded with > them! > I hope the botox gives you the all the results you want and none that you > don’t. Actually, the day I was diagnosed, (and the docs said he could hear > me yelling uncontrollably 2 rooms down!) one of the docs suggested botox if > the meds didn’t work. But later the other one emphasized the "last resort" > part and implicitly chastized the other one for bringing it up so soon. (At > the time to me it sounded preferable to neuroleptics). He said I had so > many tics all over that they’d have to completely paralyze me to stop them > all. He said that if my coprolalia became pervasively loud and > uncontrollable, they’d consider botoxing my vocal cords. But it sounds like > your case is one in which even my conservative doctor would agree to trying > botox. I was told that the worst (or at least most common) problem was that > the voice would become permanently altered, making it difficult to speak. I > hope that doesn’t interfere with your counseling, but I doubt it would – > you’d find away around it! > Anyway, I’ll say it again: WOW! BEST OF LUCK TO YOU!! > Alex
Response:
Jo, your list of issues/questions/concerns brings back what I saw my friend go through. Things didn’t go as promised. He was completely mute for several months. To me, it’s one of those cases of giving up some things that are really good along with the bad (for instance, as you mentioned, the ability to sing). Imagine life without being able to use the phone for three months. At all. Forget amplification. Imagine not speaking to your three children for several months. At all. I could go on, but I thought that his breathing tics were much better than what he endured with three months of being completely mute – even though he had been assured it wouldn’t be that bad. (I don’t know if the injection site for breathing tics would be different than the site for other vocal tics ??) Sorry to be negative, but you asked … 
)) BB2 – Hide quoted text — Show quoted text -Joanne Cohen wrote: > Dear Alex and the others who have responded: > Thank you all. I didn’t really mean to elicit apologies or excuses; I > DO appreciate how much everyone is doing and coping with in their > respective lives. I was more implying that those who DO read the posts > and seem to be on AST every day, who have the time and energy to post > a lot about other things, did not see fit to respond as people have > done very thoughtfully now. Some of you who e-mailed me privately have > asked very good questions, even giving me a few new questions to ask > and to think about prior to the shot! > So, thanks again, and I am willing to share what I learn as I learn > it. > To answer a few questions all together for everyone: > 1) Joseph Jankovic, M.D. at Texas Medical Center in Houston, TX has > written a paper about it; I’m in the process of getting it. > 2) This *IS* a last resort for me to some voluntary extent – I can be > heard up to 1/3 of a MILE away sometimes. > 3) There is not supposed to be a risk for permanent change in vocal > chords or ability to speak. > 4) This is *NOT* the same nor does it carry the same serious risks as > cingulotomy or ANY brain surgery that others have elected for TS. > 5) The results ARE temporary, lasting between 3-6 months, and then if > I choose, I can get another shot. > 6) I will NOT need anesthesia, it is a local shot. > 7) Yes, my voice may be hoarse, but softer, with lessened or inability > to produce the volume. > Becoming mute is not likely, given the small amount of Botulinum > toxin used for this. > 9) Difficulty swallowing is NOT expected to be a side effect, as it > sometimes is for people with spasmodic dysphonia who get Botox > injections into their vocal chords. > 10) While St. John’s Wart may help some with vocal tics, I have strong > feelings about not taking a ‘fake’ and ‘unregulated’ Serotonin > booster. My feeling is that if one needs and benefits from altering > Serotonin or other brain chemicals, it should be with a drug that is > prescribed by a treating physician, with consistent dosaging. > I am so sensitive and refractory that in my case it would be unwise to > play around with OTC potions that mimic what the drugs do, and have so > much variability without a doctor behind it to help me if/when I need > it. I recognize and appreciate that it works for some….. > 11) I do not yet know about possible damage to my chords if I cannot > produce the volume, yet still ‘try’ to yell due to the neurologic > ‘urge’, nor can I predict how, if, or where the energy or ‘need’ to > tic will re-emerge or re-locate. > 12) I also don’t know if the significantly reduced ability to tic > loudly will cause me to talk constantly, albeit softly, in order to > ‘get it out,’ ‘feel right’, or compensate. Also, I don’t know if my > motor tics or others will increase for these same reasons. > 13) I’m trying to anticipate the new accommodations and coping > strategies I might need, such as: a) needing a microphone for my > lectures and presentations > b) needing amplification on the telephone > c) being heard and understood by HH (hard of hearing) > ppl., esp. on the phone. > d) being frustrated by simple things, like not being > able to call my dogs from another room, or my boyfriend, or say hi to > neighbors across the way. > e) I’m wondering about not being able to sing > (something I’m probably bad at but love) or even laugh. > f) I’m hoping I don’t start ’swallowing’ my sneezes > (have you ever seen those petite little women who politely sneeze and > go "atch-yew!" like a little mouse? These are the same women who hold > in all bodily sounds, and then become bitchy because, hey, it has to > come out somehow!!! ha ha > So, that’s more info…..i hope this answers some questions…. > Now I’m going huckleberry picking!!! > Jo > Alex Neilsen wrote: > > Your post was one of many which I read and say "WOW" but never bother to > > reply to – shame on me! My two lame but true excuses are: 1) my reply > > function doesn’t work on my newsgroup (hence my new subject lines each time) > > 2) to be honest, I didn’t know what to say except "WOW! BEST OF LUCK TO > > YOU!" and I figured you’d be flooded with a million other posts of that > > sort, as popular as you are on this ng. I’m sorry you weren’t flooded with > > them! > > I hope the botox gives you the all the results you want and none that you > > don’t. Actually, the day I was diagnosed, (and the docs said he could hear > > me yelling uncontrollably 2 rooms down!) one of the docs suggested botox if > > the meds didn’t work. But later the other one emphasized the "last resort" > > part and implicitly chastized the other one for bringing it up so soon. (At > > the time to me it sounded preferable to neuroleptics). He said I had so > > many tics all over that they’d have to completely paralyze me to stop them > > all. He said that if my coprolalia became pervasively loud and > > uncontrollable, they’d consider botoxing my vocal cords. But it sounds like > > your case is one in which even my conservative doctor would agree to trying > > botox. I was told that the worst (or at least most common) problem was that > > the voice would become permanently altered, making it difficult to speak. I > > hope that doesn’t interfere with your counseling, but I doubt it would – > > you’d find away around it! > > Anyway, I’ll say it again: WOW! BEST OF LUCK TO YOU!! > > Alex
– BB2 Tourette Syndrome – Now What? http://members.home.net/blessedby2
Response:
> here – maybe KAT can remember, as she responded that her mother ? had the same > condition, involving something that resembles breathing tics
Wow,ya’ got me here. I do not recall that…..my Mother doesn’t have ‘breathing tics’, although she does have spasmodic dysphonia (neurologically impaired vocal chords), is that what you meant? KAT in CT
Response:
KATHRYN A TAUBERT wrote: > > here – maybe KAT can remember, as she responded that her mother ? had the > same > > condition, involving something that resembles breathing tics > Wow,ya’ got me here. I do not recall that…..my Mother doesn’t have > ‘breathing tics’, although she does have spasmodic dysphonia (neurologically > impaired vocal chords), is that what you meant? > KAT in CT
ummmm … I think so ) I remember a discussion about spasmodic dysphonia, and I threw in the "breathing tics" term myself, because I think that’s what my friend actually has. I never really understood the spasmodic dysphonia thing, and I even went to some newsgroups to ask the differences … — BB2 Tourette Syndrome – Now What? http://members.home.net/blessedby2
Response:
BlessedBy2 wrote: > Jo, your list of issues/questions/concerns brings back what I saw my friend go > through. Things didn’t go as promised. He was completely mute for several > months. To me, it’s one of those cases of giving up some things that are really > good along with the bad (for instance, as you mentioned, the ability to sing). > Imagine life without being able to use the phone for three months. At all. > Forget amplification. Imagine not speaking to your three children for several > months. At all. I could go on, but I thought that his breathing tics were much > better than what he endured with three months of being completely mute – even > though he had been assured it wouldn’t be that bad. (I don’t know if the > injection site for breathing tics would be different than the site for other vocal > tics ??)
Blessed, Thanks for this info. Is there any way that you could find out the name of the doctor that did this? From what I’ve learned, this should NOT happen. First, it is a different area, i think, but if the doctor knew how to dose the Botox, this should not have happened. I’ve been assured that this would not be a possibility, because a very small amount is used for this purpose. Any info you can provide while keeping your friend’s name, etc. confidential would be wonderful. Thanks. (PS – I would never do it if there was even a remote chance of becoming mute!) Jo
Response:
- Hide quoted text — Show quoted text -Joanne Cohen wrote: > BlessedBy2 wrote: > > Jo, your list of issues/questions/concerns brings back what I saw my friend go > > through. Things didn’t go as promised. He was completely mute for several > > months. To me, it’s one of those cases of giving up some things that are really > > good along with the bad (for instance, as you mentioned, the ability to sing). > > Imagine life without being able to use the phone for three months. At all. > > Forget amplification. Imagine not speaking to your three children for several > > months. At all. I could go on, but I thought that his breathing tics were much > > better than what he endured with three months of being completely mute – even > > though he had been assured it wouldn’t be that bad. (I don’t know if the > > injection site for breathing tics would be different than the site for other vocal > > tics ??) > Blessed, > Thanks for this info. Is there any way that you could find out the > name of the doctor that did this?
No, unfortunately, I can’t. It’s a very long story … <sigh> … and I knew this fellow long before I had any idea what TS was. Even if I could locate him today (not likely, since he has moved about a dozen times in the last few years, several times overseas, and then, I heard, to North Carolina to get more treatment for his bipolar, I believe), it’s not something I could ask him about. I do know that it was here in NY, and somewhere on the West Side (i.e.; not Yale, or any place we’re familiar with). > From what I’ve learned, this should > NOT happen.
He didn’t expect it either, but I guess you just should be aware that it’s a possibility … at least, then, you’ll be prepared to live with it in the event it does happen. In this case, it was quite a shock for the wife with three young children – finding herself living with someone who couldn’t speak was hard on her spoiled nature. Of course, she just solved it by dumping the kids on the nanny and going to Europe, but that’s another story … > First, it is a different area, i think, but if the doctor > knew how to dose the Botox, this should not have happened. I’ve been > assured that this would not be a possibility, because a very small > amount is used for this purpose. Any info you can provide while > keeping your friend’s name, etc. confidential would be wonderful.
My friend hasn’t acknowledged that he has TS, and it’s a tough situation politically. (I can’t remember the name of the condition he claimed to have – I posted about it once here – maybe KAT can remember, as she responded that her mother ? had the same condition, involving something that resembles breathing tics?) At any rate, I am certain his physician was in Manhattan, and he had the botox in about 1992, maybe 1993. If you think there’s any chance that you may be in contact with the same doctor, I could make some calls overseas and try to track him down and get the name of the physician, but it could take me the better part of a month to locate him … his wife likes to travel. > Thanks. > (PS – I would never do it if there was even a remote chance of > becoming mute!)
Wellll … from what I understand, you’ve got to be prepared for the unexpected at any rate. Good luck !! > Jo
– BB2 Tourette Syndrome – Now What? http://members.home.net/blessedby2
