Hard to believe it has been 4 weeks this afternoon. Seems rather unreal and with a mellow voice, one feels kind of mellow a lot, kind of drifting along. Have to drive attentively! And driving more. Ruth drove a lot at first partly due to my need to cough. Now much better, little coughing or phlegm just as folk said it would be by 4 weeks. Thankyou all who have been here before me. And to those coming after!
Swollen neck is also much reduced. A little stiff so tend to move it back and forth up and down. But never was sore or painful much to my amazement.....still don't know how to make paragraphs here. Sorry................
Other advantages: Lost a lot of weight, down 25 pounds from all time high so at 140 and loving it. Trying to maintain it but hard as liking eating again.. Swollowing problems much better too. Can drink and sip if careful. Also best lowest blood pressure in years so think that the stress of having SD effects that too as I have long thought. Would love to be able to go off that, my only medication other than reflux. Goal is 0 meds! ........................Not much else to add.
Ushering at Capital Center a lot and wear a sign everywhere that says no voice, Surgery. People seems to understand. And I can whisper or speak low in someone's ear if necessary. Saw Irish Rovers, Blues, Opera etc. just this week! Will try contra dancing this week, silently! ..........feel free to add questions or send them to me at randrstuart@gmail.com. Thanks for all your interest and support! Anyone know how to post photos or voice samples here?
Tuesday, March 25, 2014
Friday, March 14, 2014
17 days out
It has been a good week for progress. Last night, Thursday, was first night in own bed all night without much coughing though still plenty of phlegm. Expect that for another week. Eating normally and just careful with liquids. Still Using thicket with water, thin juices, hot chocolate etc. Doesn't taste different but a thicker consistency so goes down more easily............
.have had three outings into the cold NH air: ushered at Jazz concert Sunday without talking. Town meeting last night as silent loose coughing observer for first half. Today going x-c skiing and then a massage. Oh, nice. My body gets tired just sitting around. Have been using ski and bike machines at home this week. Weights too while watching news of missing plane, etc............
continue to get lots of cards and email notes which is nice! Haven't felt alone though just sitting at home almost 2 weeks now. Have had 3 visitors though it doesn't make sense to have many as not talking much. Voice is low and husky but soft and clear without breaks so far. Seems to me to be on track. Doing usual vocal excercises: right really ready beautiful do (from Cooper) and ma me ma mo, counting, alphabet, etc. Should try reading outloud today. But seems like easy does it. Not to overdo I guess..............
Wondering about skiing this next month. The snow is so deep and beautiful..........
Any questions, send them along in an email to randrstuart@gmail.com. Not sure comments here get through to me or anyone. Anyone having success posting them? ...........
more to come in a few days. Dick
.have had three outings into the cold NH air: ushered at Jazz concert Sunday without talking. Town meeting last night as silent loose coughing observer for first half. Today going x-c skiing and then a massage. Oh, nice. My body gets tired just sitting around. Have been using ski and bike machines at home this week. Weights too while watching news of missing plane, etc............
continue to get lots of cards and email notes which is nice! Haven't felt alone though just sitting at home almost 2 weeks now. Have had 3 visitors though it doesn't make sense to have many as not talking much. Voice is low and husky but soft and clear without breaks so far. Seems to me to be on track. Doing usual vocal excercises: right really ready beautiful do (from Cooper) and ma me ma mo, counting, alphabet, etc. Should try reading outloud today. But seems like easy does it. Not to overdo I guess..............
Wondering about skiing this next month. The snow is so deep and beautiful..........
Any questions, send them along in an email to randrstuart@gmail.com. Not sure comments here get through to me or anyone. Anyone having success posting them? ...........
more to come in a few days. Dick
Monday, March 10, 2014
2 weeks ago tomorrow - 14 days out
Hard to believe surgery was 2 weeks ago tomorrow! Much of that has been a blur and hard to believe. Still coughing but sleeping better, 12 hours Sat night. Still phlemn causing irritation. Bandages are off and neck looks a bit swollen but fine. Scar minimal and no stiches. Will try to post pictures of my neck and this adventure. Does anyone know how? How long does the swelling last? ...................................... .......
My first outing was yesterday when went to Concord Capital Center for the Arts to usher for a great Big Band concert of Ella Fitzgerald music. Mellow and wonderful and I could just listen. Tonight out again to Laconia for a book discussion and dining with our Meditation group. That may be more challenging as I really can't be heard in public. Only face to face, one on one at this time. But that is progress too. And I took a phone call today and I guess I could be heard. They stayed on the line and listened. Very breathy as after Botox. And it is hard to get a breath...........................................
The most remarkable thing to me again is the complete lack of Pain or soreness or the need for Pain Meds. Only took them to help sleep. Now finished with full regemin of meds. Only issue this weekend was anticipated constipation and a suppository helped. Sorry about the details but be prepared if you are next! So far so good, and it should get gradually better, inshallah!
My first outing was yesterday when went to Concord Capital Center for the Arts to usher for a great Big Band concert of Ella Fitzgerald music. Mellow and wonderful and I could just listen. Tonight out again to Laconia for a book discussion and dining with our Meditation group. That may be more challenging as I really can't be heard in public. Only face to face, one on one at this time. But that is progress too. And I took a phone call today and I guess I could be heard. They stayed on the line and listened. Very breathy as after Botox. And it is hard to get a breath...........................................
The most remarkable thing to me again is the complete lack of Pain or soreness or the need for Pain Meds. Only took them to help sleep. Now finished with full regemin of meds. Only issue this weekend was anticipated constipation and a suppository helped. Sorry about the details but be prepared if you are next! So far so good, and it should get gradually better, inshallah!
Friday, March 7, 2014
10 days after
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!
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!
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!
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