March 7th, Friday. Just heard from Dr.Berke who has been great about emailing me about my cough and possible reflux to continue to treat. It is a loose nagging cough that tends to keep me awake. Probably not so much to do with the surgery but with allergies or reflux which I am used to. Now very breathy cough that feels like my throat is just being tickled by air flowing though. My great accupuncturist suggested breathing through nose so not as much irritation passing by. That seems to help as does massages of neck and shoulders. Anything to relax!............
That leads me to say maybe again that one of the most amazing parts of all this is the online support from friends and those who have been here ahead of me, 350 of you out there somewher; and a few coming along behind me, one next Monday! It is a facebook Spasmodic Dysphonia group that is so helpful. Another deals with cures and treatments. Folk nswer all questions and anticipates some. Thank you all!..............
Did I mention a helpful part of this? I have lost over 15 pounds and am at the best weight for me since HS> Oh, these limited diets and not wanting to put too much in. Only thing now I can't have is thin liquids which must be mixed with thicket as explained above.So I can see those pounds coming back on. Must resist! ................
Today on line came the National Spasmodic Dysphonia Monthly magazine you can google. It highlights the journey and surgery of the Creator of Dilbert. His voice came back in full 3 1/2 months after the surgery. So here's hoping. Being older, I may have to wait longer. Today it is whispery, quiet but clear. Will try to make voice recordings soon to include here if can figure it out. So stay tuned. suggestions welcome................
Today had second set of visitors, both neighbors. It's so good to have a nice quiet place to recoup! First outing is set for Sunday if I am up to it: church and good Jazz!
Friday, March 7, 2014
Tuesday, March 4, 2014
one week post surgery today
Well, we made it home 5 days early! To boston SAturday on direct flight so not too bad though trying to keep cough quiet whole trip and explain I wasn't contagious! Thank goodness for plane noise. I will remember that when it seems loud! Certainly was happy to have brother David and Marcy meet us and give a place to stay over before drive home to NH on Sunday. Hadn't gotten much sleep due to constant coughing.
So good to be home.Plenty of space (compared to a motel) to cough and not bother anyone! Phew. By yesterday was being able to cough up and spit out the phlegm which I guess is still related to the anesthesia: gooey white foamy stuff if you really want to know. First 5 days couldn't get rid of it. Also was difficult to swallow and had to thicken any liquids with Thicket from drug store. No taste but prevents choking on liquids as my vocal chords are mostly separate as after Botox shots though that was never a problem for me fortunately. Now I am so glad as this first few days were horrendous.
It sounds delusional but on day 2 I thought maybe muscles and nerves had been cut too much and chords would never come together so I would live in this perpetual open throat condition. Scarry. Dr. Berke assured me he had been conservative and not cut too much. Phew! Now I can feel it all working out as it is supposed to. Everyone of the 350 I have talked with or read about talks about how tough those first 3-4 days are and I can agree. Now today after one week, I have a soft, whispery voice but clear with no breaks. Amazed people can even hear me on phone but they do and I can say things clearly I never could. Like reading off a name, address and phone or email address. Never could do that well since 1973. So this is already pretty amazing and I can live with my botoxy breathy voice for as many months as needed.
And it will be 6-12 months before the new nerve connections are re-enervated completely. Basically they cut the two nerves from brain that caused the spazams and then attached other nerves in neck. Calls for faith in the process I guess!! And will my voice next year be different? lower, breathier, able to sing or not, blow out candles, etc. Will see. And so I will continue to report especially for you who may want to try this procedure. That is really why I am doing this as it was so helpful to read others blogs and comments over the past year or more.
I really did need to retire before doing the surgery as not much voice for awhile: Though many people get back to work soon with their soft voices. Others have asked about Medicare and supplement. I have been told they will pay as they have with others as long as it is medically necessary so I hope it is deemed to be. Still not clear who or when makes that determination. Some have had to appeal their other insurance refusals. I hope I don't have to. So far, bills for lead up evaluations for this have been all covered. My Botox provider in Boston, Dr. Grillone, did come to observe the surgery and I felt so good having him there though never saw him or didn't remember. He says I spoke with him before surgery and anesthesia but I guess it had already taken effect as no memory of seeing or speaking with him. He has told others that he thought things went well and that too is reassuring! Thanks Dr. G!
Most important perhaps to say is that I have no memory of any pain or even soreness in the throat. Totally amazing as it was with My Bunion surgery last year. Maybe I am immune to pain. Don't think so as when a bang a finger or other body part! This operation was even easier that way. Have taken prescribed pain meds only to help with sleep hoping that helps. Sleep is so difficult when coughing and wheezing and stuggling for air. Seem to be on a West Coast schedule since home meaning I may fall asleep between one and two am, wake for meds at 6, about 7 of them, then sleep in morning again. Mostly post surgery meds like antibiotics, 3 cough meds, colice, one for pain, etc. Blood pressure did spike day after at least so continuing my blood pressure and acid reflux was important to continue.
So today it is gorgeous and sunny but Cold. So I stay in starting to exercise inside. Look forward to getting out later this week. Stay tuned for occasional updates. Send any questions and especially if you are considering this for yourself. Thanks to all who have given so much encouragement and support! you may call but you may not hear me answer! 603-253-9964. Call back in a few days!
So good to be home.Plenty of space (compared to a motel) to cough and not bother anyone! Phew. By yesterday was being able to cough up and spit out the phlegm which I guess is still related to the anesthesia: gooey white foamy stuff if you really want to know. First 5 days couldn't get rid of it. Also was difficult to swallow and had to thicken any liquids with Thicket from drug store. No taste but prevents choking on liquids as my vocal chords are mostly separate as after Botox shots though that was never a problem for me fortunately. Now I am so glad as this first few days were horrendous.
It sounds delusional but on day 2 I thought maybe muscles and nerves had been cut too much and chords would never come together so I would live in this perpetual open throat condition. Scarry. Dr. Berke assured me he had been conservative and not cut too much. Phew! Now I can feel it all working out as it is supposed to. Everyone of the 350 I have talked with or read about talks about how tough those first 3-4 days are and I can agree. Now today after one week, I have a soft, whispery voice but clear with no breaks. Amazed people can even hear me on phone but they do and I can say things clearly I never could. Like reading off a name, address and phone or email address. Never could do that well since 1973. So this is already pretty amazing and I can live with my botoxy breathy voice for as many months as needed.
And it will be 6-12 months before the new nerve connections are re-enervated completely. Basically they cut the two nerves from brain that caused the spazams and then attached other nerves in neck. Calls for faith in the process I guess!! And will my voice next year be different? lower, breathier, able to sing or not, blow out candles, etc. Will see. And so I will continue to report especially for you who may want to try this procedure. That is really why I am doing this as it was so helpful to read others blogs and comments over the past year or more.
I really did need to retire before doing the surgery as not much voice for awhile: Though many people get back to work soon with their soft voices. Others have asked about Medicare and supplement. I have been told they will pay as they have with others as long as it is medically necessary so I hope it is deemed to be. Still not clear who or when makes that determination. Some have had to appeal their other insurance refusals. I hope I don't have to. So far, bills for lead up evaluations for this have been all covered. My Botox provider in Boston, Dr. Grillone, did come to observe the surgery and I felt so good having him there though never saw him or didn't remember. He says I spoke with him before surgery and anesthesia but I guess it had already taken effect as no memory of seeing or speaking with him. He has told others that he thought things went well and that too is reassuring! Thanks Dr. G!
Most important perhaps to say is that I have no memory of any pain or even soreness in the throat. Totally amazing as it was with My Bunion surgery last year. Maybe I am immune to pain. Don't think so as when a bang a finger or other body part! This operation was even easier that way. Have taken prescribed pain meds only to help with sleep hoping that helps. Sleep is so difficult when coughing and wheezing and stuggling for air. Seem to be on a West Coast schedule since home meaning I may fall asleep between one and two am, wake for meds at 6, about 7 of them, then sleep in morning again. Mostly post surgery meds like antibiotics, 3 cough meds, colice, one for pain, etc. Blood pressure did spike day after at least so continuing my blood pressure and acid reflux was important to continue.
So today it is gorgeous and sunny but Cold. So I stay in starting to exercise inside. Look forward to getting out later this week. Stay tuned for occasional updates. Send any questions and especially if you are considering this for yourself. Thanks to all who have given so much encouragement and support! you may call but you may not hear me answer! 603-253-9964. Call back in a few days!
Thursday, February 27, 2014
sorry about format
Interesting that I type these with plenty of paragraphs and punctuation but they publish on one large run on paragraph! Sorry about that! any suggestions?
wow: took until June 30th to figure out how to make paragraphs which am now doing! Still no photos but hang in there!
wow: took until June 30th to figure out how to make paragraphs which am now doing! Still no photos but hang in there!
2 days post surgery!
Tiverton house has free bikes and helmets to rent so Monday after pre op we rode to Santa monica a few miles west on wide bikelanes. Past hundreds of gorgeous houses and then 12 miles on cement bikepath the length of the beach. And 75 degrees perfect sun. Nice for day before surgery.
That was to be at 3tuesday but ahead of schedule so in at 12.30with going under about two . In recovery about six and never did See Dr Grillone as he had flight home about then. So glad he was there and The big team said they enjoyed him and hope he will do it in the east- Boston where he could be first in NE. He is my Botox dr and hopefully I won't need that anymore but maybe should just to support him. Thanks again for being here. Hope it was useful as a long way to come.
Now 48hours in recovery in two different well attended rooms. Great nursing, etc. Rather gruelling to say the least as huge quantities of phlemn I had been warned about by docs and other patients. Suction machine helps but can't take it with me tomorrow. No pain or soreness but tons of coughing loose and breathy dealing with the phlegm. Yuck. Last night I had delusions or fear that the muscle was cut too much so I would be breathy and unable to catch my breath ever pretty scary and not much sleep first day or night but better last night wih cough meds and ativan to calm me.
First meal arrived so will break now as eating and learning to swallow is another story. Feeling much better today. Great having Ruth and my sister Anne here too. Thanks for all your messages, prayers and best wishes. Incidentally I will have a smooth but very breathy soft voice for up to a year before volume builds back in with the newly reentervated nerves.
Google the op and doc as suggested above if you wish more details! probably for most this is more than enough. Send questions. Y V Er
That was to be at 3tuesday but ahead of schedule so in at 12.30with going under about two . In recovery about six and never did See Dr Grillone as he had flight home about then. So glad he was there and The big team said they enjoyed him and hope he will do it in the east- Boston where he could be first in NE. He is my Botox dr and hopefully I won't need that anymore but maybe should just to support him. Thanks again for being here. Hope it was useful as a long way to come.
Now 48hours in recovery in two different well attended rooms. Great nursing, etc. Rather gruelling to say the least as huge quantities of phlemn I had been warned about by docs and other patients. Suction machine helps but can't take it with me tomorrow. No pain or soreness but tons of coughing loose and breathy dealing with the phlegm. Yuck. Last night I had delusions or fear that the muscle was cut too much so I would be breathy and unable to catch my breath ever pretty scary and not much sleep first day or night but better last night wih cough meds and ativan to calm me.
First meal arrived so will break now as eating and learning to swallow is another story. Feeling much better today. Great having Ruth and my sister Anne here too. Thanks for all your messages, prayers and best wishes. Incidentally I will have a smooth but very breathy soft voice for up to a year before volume builds back in with the newly reentervated nerves.
Google the op and doc as suggested above if you wish more details! probably for most this is more than enough. Send questions. Y V Er
Monday, February 24, 2014
tomorrow at 3 is the surgery
Finally we are here at Tiverton House on the UCLA campus. Very nice accommodations and breakfast and even bikes we can borrow to ride to the beach, etc.as we did today following our intake appointment with Dr. Berke. He and his team are very professional and friendly and answered all my remaining questions: How long before I can eat: soon but have to be careful with swallowing and use thicket with liquids which I have purchased as advised.
May be able to return home sooner than next Wednesday in which case we can change our flights home for a small charge. That would be good as hotels are expensive though Tiverton reasonable. They had questions about my history and scoped my vocal chords but decided they could go ahead tomorrow as I am a good candidate though my age will make for a longer recovery than if I was younger. It may be up to a year before full voice returns. Will be breathy In the meantime like after Botox injections. This hopefully is like a permanent botox which I have now had twice a year for 25 years!
So my last food is tonight and then show up at the hospital at 12:30 for 3 PM 3 hour operation. Will let you know sometime after that how I am doing! It might be a few days but hope sooner! Stay tuned and know how much your messeges and calls have meant. I certainly don't feel alone. You are with me in spirit and Ruth and my sister Anne will be here too as well as my Botox Dr from Boston, Dr. Grillone who will be observing and hopefully making sure all goes according to plan.
Thank you all! More later. Now my last solid food before bed, a coconut donut and banana! Yea.
May be able to return home sooner than next Wednesday in which case we can change our flights home for a small charge. That would be good as hotels are expensive though Tiverton reasonable. They had questions about my history and scoped my vocal chords but decided they could go ahead tomorrow as I am a good candidate though my age will make for a longer recovery than if I was younger. It may be up to a year before full voice returns. Will be breathy In the meantime like after Botox injections. This hopefully is like a permanent botox which I have now had twice a year for 25 years!
So my last food is tonight and then show up at the hospital at 12:30 for 3 PM 3 hour operation. Will let you know sometime after that how I am doing! It might be a few days but hope sooner! Stay tuned and know how much your messeges and calls have meant. I certainly don't feel alone. You are with me in spirit and Ruth and my sister Anne will be here too as well as my Botox Dr from Boston, Dr. Grillone who will be observing and hopefully making sure all goes according to plan.
Thank you all! More later. Now my last solid food before bed, a coconut donut and banana! Yea.
Wednesday, February 19, 2014
one week to surgery
One week from now I should be done with the surgery to fix my Spasmodic Dysphonia which I have had since 1973. My Boston Med Center Botox MD is planning to be there to observe and I am delighted to have Dr. Grillone there. About mid jan I finally heard that insurance should pay and was given a pre op appointment with Dr Berke Monday Feb 24 with surgery the next day. He has done 350 plus of these ops with good success rate so I remain hopeful though it is scary.
Will check into Tiverton house Sunday afternoon with Ruth to be ready for Monday two blocks away on the UCLA campus. Should be two Nights in Ronald Regan Hospital, then back to Tiverton or visiting with new friends who have had the surgery. Home hopefully March 5 if all goes as planned and Dr Burke approves. Thanks for all your interest and support!!!
Google slad-r surgery or Dr Burke if interested.
Will check into Tiverton house Sunday afternoon with Ruth to be ready for Monday two blocks away on the UCLA campus. Should be two Nights in Ronald Regan Hospital, then back to Tiverton or visiting with new friends who have had the surgery. Home hopefully March 5 if all goes as planned and Dr Burke approves. Thanks for all your interest and support!!!
Google slad-r surgery or Dr Burke if interested.
Saturday, December 7, 2013
second post a week later!
Wow, went to DC Spasmodic Dysphonia group Wed Dec 4th for the 2nd time in 3 years. Here in DC with Grandchildren so wanted to go. Excellent Dr. and speech therapist spoke. Lots of discussion including about the SLAD-r surgery. Folk were quite interested and judging from a spike the next day, several may have looked up my blog.
People in California
are still having trouble with their insurance being accepted so we will find out about that for my surgery on about Jan 6 if all goes as planned. It is still nerve wracking but I am reconciling myself to whatever happens. Don't really want to have to make two trips to California as we already plan to be there for the appointed date of Feb 25th as vacationing out there before that.
My sister is in Palo Alto and friends elsewhere so we will use the time. Holiday greetings to all and stay tuned in the new year!
People in California
are still having trouble with their insurance being accepted so we will find out about that for my surgery on about Jan 6 if all goes as planned. It is still nerve wracking but I am reconciling myself to whatever happens. Don't really want to have to make two trips to California as we already plan to be there for the appointed date of Feb 25th as vacationing out there before that.
My sister is in Palo Alto and friends elsewhere so we will use the time. Holiday greetings to all and stay tuned in the new year!
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