Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 hey guys, remember i told you i was denied but the nurse said it sounded more like they wanted more information and the case was still open so it wasn't exactly a denial but said i didn't meet criteria - sounds like being a little bit pregnant to me - KWIM - anyway - i've been bummed since then and didn't have the heart or energy to get into it again but i'm getting inspiration from here today and i've just called my pharmacy and they are doing a printout on my meds for a year and i scheduled a sleep study for tonight -- a little progress that i hope will help. thanx visit our website www.geocities.com/tanyarn96/countryside.html -- Re: pre op done yay!!!! sarah, you're gonna do great! you're lucky to have your mom that's been through it & we're here, a couple of mouse clicks away. lori h. > sarah > 7/21 date yay!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Please tell me one of your doctor's ordered that sleep study and without a surgery diagnosis! If you are having symptoms that it akes sense to have this test, then make sure it has a diagnosis code related to your symptoms on it and no reference to surgery anywhere. Otherwise you could be looking at a huge bill - $2200 in Oshkosh and I'm sure more in IL. Has the surgeon requested this? If not, BCBS might have a bird about it. Just a warning! I know you are anxious to get the approval but please be careful not to dig yourself into a major financial hole! D. (Just being concerned) > > sarah > > 7/21 date yay!!! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 i bet they did b/c the surgeon is the one that ordered it - i'll call right now and see what they say - plus i don't think i have sleep apnea - it was a split test - halfway through if i had apnea he was going to hook me to the CPAP and they didn't so.....i'm probably screwed and will end up with ALL these pre-op tests. visit our website www.geocities.com/tanyarn96/countryside.html -- Re: update Please tell me one of your doctor's ordered that sleep study and without a surgery diagnosis! If you are having symptoms that it akes sense to have this test, then make sure it has a diagnosis code related to your symptoms on it and no reference to surgery anywhere. Otherwise you could be looking at a huge bill - $2200 in Oshkosh and I'm sure more in IL. Has the surgeon requested this? If not, BCBS might have a bird about it. Just a warning! I know you are anxious to get the approval but please be careful not to dig yourself into a major financial hole! D. (Just being concerned) > > sarah > > 7/21 date yay!!! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 You don't have to have sleep apnea to be approved, so just take it one thing at a time. I'd give a call back to the nurse you talked to and see what efforts they have made about contacting the insurance company. I wonder if it is possible to change who order the test and the diagnosis code at this point. Probably not, but you could ask. If ordered by your PCP with a non-surgical code it would likely be covered with no questions asked. I'll keep my fingers crossed this works out soon and you get approval. D. > > > sarah > > > 7/21 date yay!!! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 > Dr. Cohen called this morning and spoke with my mom concerning our list of > questions. He said he see's the IV Carnitine being long term. He said no to a > broviac, but yes to a port. Sooo you know now that I need to hear from all you > port experts. (Dawn I know you are cheering about that one. hehe) It's like you were reading my mind, I started to cheer! The needle. It's pretty much the same concept as an IV though it is a sterile procedure to clean etc. then you put the needle into the port and tape it down. It can be left in and flush perodically.You use emla to numb the area first. I am so happy that he thought this was a good idea. Dr. , he is very nice and easy to talk to. He covered for DiFiore after s surgery because he went out of town that weekend. 's doc here has worked with him in the past and everyone loves him! I beleive you will need to be admitted 24 hrs in advance (push for it). You will need to be hooked up to IVs because with Mito you CANNOT fast. This will also give surgery and anesthisia time to consult and do any testing they might need.(with we sometimes need EKG,Echo, PT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 > Dr. Cohen called this morning and spoke with my mom concerning our list of > questions. He said he see's the IV Carnitine being long term. He said no to a > broviac, but yes to a port. Sooo you know now that I need to hear from all you > port experts. (Dawn I know you are cheering about that one. hehe) It's like you were reading my mind, I started to cheer! The needle. It's pretty much the same concept as an IV though it is a sterile procedure to clean etc. then you put the needle into the port and tape it down. It can be left in and flush perodically.You use emla to numb the area first. I am so happy that he thought this was a good idea. Dr. , he is very nice and easy to talk to. He covered for DiFiore after s surgery because he went out of town that weekend. 's doc here has worked with him in the past and everyone loves him! I beleive you will need to be admitted 24 hrs in advance (push for it). You will need to be hooked up to IVs because with Mito you CANNOT fast. This will also give surgery and anesthisia time to consult and do any testing they might need.(with we sometimes need EKG,Echo, PT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 > Dr. Cohen called this morning and spoke with my mom concerning our list of > questions. He said he see's the IV Carnitine being long term. He said no to a > broviac, but yes to a port. Sooo you know now that I need to hear from all you > port experts. (Dawn I know you are cheering about that one. hehe) It's like you were reading my mind, I started to cheer! The needle. It's pretty much the same concept as an IV though it is a sterile procedure to clean etc. then you put the needle into the port and tape it down. It can be left in and flush perodically.You use emla to numb the area first. I am so happy that he thought this was a good idea. Dr. , he is very nice and easy to talk to. He covered for DiFiore after s surgery because he went out of town that weekend. 's doc here has worked with him in the past and everyone loves him! I beleive you will need to be admitted 24 hrs in advance (push for it). You will need to be hooked up to IVs because with Mito you CANNOT fast. This will also give surgery and anesthisia time to consult and do any testing they might need.(with we sometimes need EKG,Echo, PT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Way to go !! How does it feel?? 431/384/170 Lap RNY 6/20/03 Update I went to see my Dr today for a follow up from surgery. I had surgery on June 10th and I have lost 33 pounds!!!!! I am so happy. I need to lose 40 more pounds and I will be at goal weight Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Alice, Bless her heart! I had not idea that you had all that going on. You should have shared before now so that I could have been praying specifically for your needs. I'm really sorry for all that you are having to endure and I pray that things get better. Please keep me posted on your test results and about the implants. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Alice I am glad you shared this with the group. You are always so supportive of everyone on the list and it is your time to be supported. You have probably used every ounce of strength to get this information. Now it is time for us to share some of our strength with you. Lots and lots of hugs, laurie > > Reply-To: > Date: Fri, 12 Mar 2004 04:09:25 -0000 > To: > Subject: Update > > Some of you know that I've had some interesting months with some > noticeable changes. It's time that I updated the group so that > everyone knows what is going on with me. There is a lot to share > but not all the answers are in. > > Last week, I went to Cleveland to see Dr Cohen. It had been 3 years > and he did see an obvious decline which he didn't attribute to age. > I don't have the test results back yet but he suspects a few things > which I will hold in reserve until I have his report. The visit was > a very quick one but a long trip from Albuquerque. > > There were two reasons to head to the Lakes region. As you all > know, I have two cochlear implants. The one on the left has been a > problem for at least 3 1/2 years and the one on the right was done > last March and began failing in June. Naturally, the assumption was > that my disease was the cause of my CI problems. In fact, it was so > easy to assume that that the doctors really didn't try to look > further. In Novemeber, the right was so bad that I had to start > wearing the left side BTE again. I quickly began to have some very > serious equilibrium problems and really became quite ill. I was > sure that this coincided with the use of both implants. The doctors > were not really sure what was going on.. had various thoughts which > I won't go into here. I had a CT Scan done in a relatively new lab > because the other labs here were booked so heavily it would have > taken until mid January to get in. This was a blessing in disguise > as the new lab - new tech - wrote that there was only one thing that > he could see and that was that the electrodes were outside of the > cochlea on the left. > > Back to the doctors I went. We were relieved that there weren't any > signs of infection which was what we were looking for but no one had > ever said that the electrodes were not coiled within the cochlea on > the left (except me). The CI surgeon seemed somewhat casual when we > went to see him but when I became a little strong about the > information on the left - he took a second look and then ordered the > CT Scans taken last year before the right was done to be brought to > his office by courier. We waited...they came.... he looked..and he > looked again....and then harder. He saw it but he didn't believe it > so he ordered new scans. I had them done and immediately, he sat > with me to express his apology for not seeing it last year but that > the scans were the same.. and the electrode array on the left is > outside of the cochlea...in the back. There is a hole in the > cochlea. How it got there..no one knows.. but it is more likely > than not a surgical error which happened when I had the implant > done. > > Part of my trip to the Lakes area was also to go to U of Michigan > where I saw a doctor who gave a second opinion on the possibility of > repair of the left. This is not something that is ever seen and both > doctors have stated that there is no way to repair it. There are a > couple of excellent doctors who would like to see my scans and think > this can be fixed but we're going to take this one step at a time. > > OK..now we know it's not Mito that caused my loss of hearing on the > left. We also know that the implant on the right has failed. The > left can't easily be fixed if at all. The right can be replaced and > if luck is with me, my system hasn't caused the problem on the left > and the replacement will fix the problem. It does not pass testing > very well but until it is removed and replaced and the new one is > activated.. we won't really know. > > I'm scheduled for re-implant of the right on 3/24 and the implant > will be activated on 4/12. That's the day after Easter and the > beginning of Spring. I'm ready for new beginnings. Only if the > right replacement doesn't work will I venture any further with the > left. We will very likely put my old friend on the left to sleep by > shutting it completely down as the array is 2cm from the cartoid > artery. > > Alice > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Alice, I am sorry you have to go through all of this. I wish you would have let us know sooner. You are such a support for all of us. We could have/ should have been the support for you. I will keep you in my thoughts, and please keep us updated as you can. Smiles and hugs, a On Fri, 12 Mar 2004 04:09:25 -0000 "Alice" writes: Some of you know that I've had some interesting months with some noticeable changes. It's time that I updated the group so that everyone knows what is going on with me. There is a lot to share but not all the answers are in.Last week, I went to Cleveland to see Dr Cohen. It had been 3 years and he did see an obvious decline which he didn't attribute to age. I don't have the test results back yet but he suspects a few things which I will hold in reserve until I have his report. The visit was a very quick one but a long trip from Albuquerque.There were two reasons to head to the Lakes region. As you all know, I have two cochlear implants. The one on the left has been a problem for at least 3 1/2 years and the one on the right was done last March and began failing in June. Naturally, the assumption was that my disease was the cause of my CI problems. In fact, it was so easy to assume that that the doctors really didn't try to look further. In Novemeber, the right was so bad that I had to start wearing the left side BTE again. I quickly began to have some very serious equilibrium problems and really became quite ill. I was sure that this coincided with the use of both implants. The doctors were not really sure what was going on.. had various thoughts which I won't go into here. I had a CT Scan done in a relatively new lab because the other labs here were booked so heavily it would have taken until mid January to get in. This was a blessing in disguise as the new lab - new tech - wrote that there was only one thing that he could see and that was that the electrodes were outside of the cochlea on the left.Back to the doctors I went. We were relieved that there weren't any signs of infection which was what we were looking for but no one had ever said that the electrodes were not coiled within the cochlea on the left (except me). The CI surgeon seemed somewhat casual when we went to see him but when I became a little strong about the information on the left - he took a second look and then ordered the CT Scans taken last year before the right was done to be brought to his office by courier. We waited...they came.... he looked..and he looked again....and then harder. He saw it but he didn't believe it so he ordered new scans. I had them done and immediately, he sat with me to express his apology for not seeing it last year but that the scans were the same.. and the electrode array on the left is outside of the cochlea...in the back. There is a hole in the cochlea. How it got there..no one knows.. but it is more likely than not a surgical error which happened when I had the implant done. Part of my trip to the Lakes area was also to go to U of Michigan where I saw a doctor who gave a second opinion on the possibility of repair of the left. This is not something that is ever seen and both doctors have stated that there is no way to repair it. There are a couple of excellent doctors who would like to see my scans and think this can be fixed but we're going to take this one step at a time.OK..now we know it's not Mito that caused my loss of hearing on the left. We also know that the implant on the right has failed. The left can't easily be fixed if at all. The right can be replaced and if luck is with me, my system hasn't caused the problem on the left and the replacement will fix the problem. It does not pass testing very well but until it is removed and replaced and the new one is activated.. we won't really know.I'm scheduled for re-implant of the right on 3/24 and the implant will be activated on 4/12. That's the day after Easter and the beginning of Spring. I'm ready for new beginnings. Only if the right replacement doesn't work will I venture any further with the left. We will very likely put my old friend on the left to sleep by shutting it completely down as the array is 2cm from the cartoid artery.AliceMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Alice, I wish you all the best in what appears to be a long journey for you. I really hope the replacement will restore your hearing and that you get the answers that you are looking for with regards to your tests. Keep us posted. (I'm sure that many here, including myself, are praying for you.) Maggie > Some of you know that I've had some interesting months with some > noticeable changes. It's time that I updated the group so that > everyone knows what is going on with me. There is a lot to share > but not all the answers are in. > > Last week, I went to Cleveland to see Dr Cohen. It had been 3 years > and he did see an obvious decline which he didn't attribute to age. > I don't have the test results back yet but he suspects a few things > which I will hold in reserve until I have his report. The visit was > a very quick one but a long trip from Albuquerque. > > There were two reasons to head to the Lakes region. As you all > know, I have two cochlear implants. The one on the left has been a > problem for at least 3 1/2 years and the one on the right was done > last March and began failing in June. Naturally, the assumption was > that my disease was the cause of my CI problems. In fact, it was so > easy to assume that that the doctors really didn't try to look > further. In Novemeber, the right was so bad that I had to start > wearing the left side BTE again. I quickly began to have some very > serious equilibrium problems and really became quite ill. I was > sure that this coincided with the use of both implants. The doctors > were not really sure what was going on.. had various thoughts which > I won't go into here. I had a CT Scan done in a relatively new lab > because the other labs here were booked so heavily it would have > taken until mid January to get in. This was a blessing in disguise > as the new lab - new tech - wrote that there was only one thing that > he could see and that was that the electrodes were outside of the > cochlea on the left. > > Back to the doctors I went. We were relieved that there weren't any > signs of infection which was what we were looking for but no one had > ever said that the electrodes were not coiled within the cochlea on > the left (except me). The CI surgeon seemed somewhat casual when we > went to see him but when I became a little strong about the > information on the left - he took a second look and then ordered the > CT Scans taken last year before the right was done to be brought to > his office by courier. We waited...they came.... he looked..and he > looked again....and then harder. He saw it but he didn't believe it > so he ordered new scans. I had them done and immediately, he sat > with me to express his apology for not seeing it last year but that > the scans were the same.. and the electrode array on the left is > outside of the cochlea...in the back. There is a hole in the > cochlea. How it got there..no one knows.. but it is more likely > than not a surgical error which happened when I had the implant > done. > > Part of my trip to the Lakes area was also to go to U of Michigan > where I saw a doctor who gave a second opinion on the possibility of > repair of the left. This is not something that is ever seen and both > doctors have stated that there is no way to repair it. There are a > couple of excellent doctors who would like to see my scans and think > this can be fixed but we're going to take this one step at a time. > > OK..now we know it's not Mito that caused my loss of hearing on the > left. We also know that the implant on the right has failed. The > left can't easily be fixed if at all. The right can be replaced and > if luck is with me, my system hasn't caused the problem on the left > and the replacement will fix the problem. It does not pass testing > very well but until it is removed and replaced and the new one is > activated.. we won't really know. > > I'm scheduled for re-implant of the right on 3/24 and the implant > will be activated on 4/12. That's the day after Easter and the > beginning of Spring. I'm ready for new beginnings. Only if the > right replacement doesn't work will I venture any further with the > left. We will very likely put my old friend on the left to sleep by > shutting it completely down as the array is 2cm from the cartoid > artery. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Dear Alice, So sorry to hear that you have been ha ing such a hard time lately. That is really too bad and too awful about the left CI, but I sure hope you can get the right one going soon (as you said) and get going again. i hope the lab work that Dr. Cohen ordered turns out not too bad for you. I'll be thinking of you, Celia- - In , " Alice " wrote: > Some of you know that I've had some interesting months with some > noticeable changes. It's time that I updated the group so that > everyone knows what is going on with me. There is a lot to share > but not all the answers are in. > > Last week, I went to Cleveland to see Dr Cohen. It had been 3 years > and he did see an obvious decline which he didn't attribute to age. > I don't have the test results back yet but he suspects a few things > which I will hold in reserve until I have his report. The visit was > a very quick one but a long trip from Albuquerque. > > There were two reasons to head to the Lakes region. As you all > know, I have two cochlear implants. The one on the left has been a > problem for at least 3 1/2 years and the one on the right was done > last March and began failing in June. Naturally, the assumption was > that my disease was the cause of my CI problems. In fact, it was so > easy to assume that that the doctors really didn't try to look > further. In Novemeber, the right was so bad that I had to start > wearing the left side BTE again. I quickly began to have some very > serious equilibrium problems and really became quite ill. I was > sure that this coincided with the use of both implants. The doctors > were not really sure what was going on.. had various thoughts which > I won't go into here. I had a CT Scan done in a relatively new lab > because the other labs here were booked so heavily it would have > taken until mid January to get in. This was a blessing in disguise > as the new lab - new tech - wrote that there was only one thing that > he could see and that was that the electrodes were outside of the > cochlea on the left. > > Back to the doctors I went. We were relieved that there weren't any > signs of infection which was what we were looking for but no one had > ever said that the electrodes were not coiled within the cochlea on > the left (except me). The CI surgeon seemed somewhat casual when we > went to see him but when I became a little strong about the > information on the left - he took a second look and then ordered the > CT Scans taken last year before the right was done to be brought to > his office by courier. We waited...they came.... he looked..and he > looked again....and then harder. He saw it but he didn't believe it > so he ordered new scans. I had them done and immediately, he sat > with me to express his apology for not seeing it last year but that > the scans were the same.. and the electrode array on the left is > outside of the cochlea...in the back. There is a hole in the > cochlea. How it got there..no one knows.. but it is more likely > than not a surgical error which happened when I had the implant > done. > > Part of my trip to the Lakes area was also to go to U of Michigan > where I saw a doctor who gave a second opinion on the possibility of > repair of the left. This is not something that is ever seen and both > doctors have stated that there is no way to repair it. There are a > couple of excellent doctors who would like to see my scans and think > this can be fixed but we're going to take this one step at a time. > > OK..now we know it's not Mito that caused my loss of hearing on the > left. We also know that the implant on the right has failed. The > left can't easily be fixed if at all. The right can be replaced and > if luck is with me, my system hasn't caused the problem on the left > and the replacement will fix the problem. It does not pass testing > very well but until it is removed and replaced and the new one is > activated.. we won't really know. > > I'm scheduled for re-implant of the right on 3/24 and the implant > will be activated on 4/12. That's the day after Easter and the > beginning of Spring. I'm ready for new beginnings. Only if the > right replacement doesn't work will I venture any further with the > left. We will very likely put my old friend on the left to sleep by > shutting it completely down as the array is 2cm from the cartoid > artery. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 I'm scheduled for re-implant of the right on 3/24 and the implant will be activated on 4/12. That's the day after Easter and the beginning of Spring. Hi Alice, I am so sorry you have been through so many ups and downs lately. I hope that your surgery goes well next week and the implant will be successful for you. I'm glad you let us know all that is going on so that we can try to be there for you too. Please keep us update on how everything goes. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Alice I have confidence that your CI will work and that your mappings will go well. I'm glad you are feeling a bit better. Did Dr. Cohen tell you the significance of the low amino acids? At one time they were saying that low didn't mean anything. I'm asking since I have many that have a value of 0. laurie > > Reply-To: > Date: Sat, 03 Apr 2004 17:34:04 -0000 > To: > Subject: Update > > Hi all.. I thought I'd take a minute or two of your time to update > you with my results at Cleveland and where I stand. > > Everything is in and the labs showed low creatine, high carnitine in > the urine and a great many low amino acids. Dr Cohen feels that > this is idicative of the " stage of the disease " and has had me start > Carnitor again. I started two days ago, and I can honestly say that > this time, my system is not rejecting it. Instead, I am feeling > somewhat better and even a little stronger. I started on 990 mg a > day which I'm sure he will eventually increase, but aside from being > beyond the surgery and having some healing time, my overall health > does seem somewhat improved. He did say that my test results > substantiated the low muscle mass and recommended very light > exercise. I am hoping to get into a light exercise program thru my > health insurance which is done in a pool. They put people in the > pool in wheelchairs and it's supposed to be a great program. Since > my health insurance will cover it, it does sound good right now even > though I will be totally deaf in the pool because I can't wear the > processors in the water. > > On Monday, 4/12, we will activate my new implant. I am more nervous > about this activation than any of the others because this is a do or > die situation for me. It just has to work. > > Alice > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Laurie, I hope you are right about the CI. I am pretty confident but won't know for sure until we do the mapping on 4/12. I am waiting for the official report from Dr Cohen but he did say in an e mail that this is what he would expect in my situation. Low muscle mass explains it (low creatine and low amino acids) all and the low muscle mass is due to the mito disease. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Good luck Alice, you're a source of strength for us so spend a little of that strength on yourself Take care, RH > Hi all.. I thought I'd take a minute or two of your time to update > you with my results at Cleveland and where I stand. > > Everything is in and the labs showed low creatine, high carnitine in > the urine and a great many low amino acids. Dr Cohen feels that > this is idicative of the " stage of the disease " and has had me start > Carnitor again. I started two days ago, and I can honestly say that > this time, my system is not rejecting it. Instead, I am feeling > somewhat better and even a little stronger. I started on 990 mg a > day which I'm sure he will eventually increase, but aside from being > beyond the surgery and having some healing time, my overall health > does seem somewhat improved. He did say that my test results > substantiated the low muscle mass and recommended very light > exercise. I am hoping to get into a light exercise program thru my > health insurance which is done in a pool. They put people in the > pool in wheelchairs and it's supposed to be a great program. Since > my health insurance will cover it, it does sound good right now even > though I will be totally deaf in the pool because I can't wear the > processors in the water. > > On Monday, 4/12, we will activate my new implant. I am more nervous > about this activation than any of the others because this is a do or > die situation for me. It just has to work. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Alice I am keeping you in my prayers....most ci users have success so I am keeping positive thoughts about you. I am without sound....the cord leading to my magnet has a loose wire. My husband tried using electrical tape to no avail. Why does this kind of thing always happen on the weekend? Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 listen Alice even if you only get enough sound to hear you own voice that is important and a big deal....yes the expectations low and hopes high! (hugs) I truly am praying for you and as I said most ci's are a success. Maybe the fact that it is Easter monday you are hooking up is a sign? I don't know about the behind the ear model....I would dearly love to be rid of this cord. Bill Graham calls it his ball and chain. I am no sure it will have enough power for me as a partial insert....cochlear themselves doesn't have an answer for me on that one. Nothing is ever simple with these ci's is it? Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Oh Vivian - I'm sorry because that can be very aggravating. Yes.. everything seems to happen on the weekends..it's 's Law. Hopefully, you can get your replacement cord tomorrow. Will you be getting the N22 3G? I have to tell you that I've heard many good things from the people who are using it on a trial basis. It should be out as soon as the company upgrades the areas they found were in need during the trials. Thanks for the prayers and the vote of confidence. This time is a little more scary because it is a replacement and we don't have sound reason for the failure of the one that was removed. There was some question as to whether it was my system. So - until we activate - we won't really konw that answer. I'm almost positive that it's going to be just fine but you remember the recommendation to keep your expectations low and your hopes high. That's what I'm doing. :-) Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 In a message dated 4/3/2004 1:38:46 PM Eastern Standard Time, justagram@... writes: Everything is in and the labs showed low creatine, high carnitine in the urine and a great many low amino acids. Dr Cohen feels that this is idicative of the " stage of the disease " HI Alice, You mentioned having a low creatine level. Does Dr Cohen treat that with long term creatine? I have been told in the past that staying on creatine long term may not be good, so I am wondering if he even does anything for the low levels or if he just uses it as a marker of how the disease is progressing. I have also been told that low creatine is only usually seen in children with developmental disorders with mito. It's interesting that he's testing adults for it too. You will be in my prayers on 4/12. I really hope this implant works for you and things go well with the activation. Hugs, Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi Malissa, No. I have not been put on a Creatine treatment. The only thing we added is Carnitor. Yikes ! Developmental disorders? Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Alice, Good luck with implant (this is probably going to be one of the longest weeks in history for you, isn't it?) Glad that you seem to be accepting the carnitor this time. I'm surprised that you feel a difference after only a couple of days (that's terrific). BTW, do you know if anyone experiences headaches with the carnitor or CoQ10 usage? Maggie > Hi all.. I thought I'd take a minute or two of your time to update > you with my results at Cleveland and where I stand. > > Everything is in and the labs showed low creatine, high carnitine in > the urine and a great many low amino acids. Dr Cohen feels that > this is idicative of the " stage of the disease " and has had me start > Carnitor again. I started two days ago, and I can honestly say that > this time, my system is not rejecting it. Instead, I am feeling > somewhat better and even a little stronger. I started on 990 mg a > day which I'm sure he will eventually increase, but aside from being > beyond the surgery and having some healing time, my overall health > does seem somewhat improved. He did say that my test results > substantiated the low muscle mass and recommended very light > exercise. I am hoping to get into a light exercise program thru my > health insurance which is done in a pool. They put people in the > pool in wheelchairs and it's supposed to be a great program. Since > my health insurance will cover it, it does sound good right now even > though I will be totally deaf in the pool because I can't wear the > processors in the water. > > On Monday, 4/12, we will activate my new implant. I am more nervous > about this activation than any of the others because this is a do or > die situation for me. It just has to work. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Jan I'm glad you found someone who has the knowledge and kindness to work with you and Duane. I am so very sorry that the news was such as it is. You will both be in my thoughts. laurie > > Reply-To: > Date: Thu, 22 Apr 2004 23:28:09 -0700 > To: > > Subject: Update > > Hi All > > I have been working for 8 months to get in to see Dr Russ Saneto who is a Mito > Dr in Seattle At children's orthopedic hospital we had to get a dispensation > to see him. > > We went last Friday It was so nice just to be understood and not told that > there is just nothing that they can do and oh by the way its anxiety here is > some lorazapam to give him, > > I asked this Dr if I could take him home with me he laughed. > > He gave us some Good news and bad news > > Good news he put Duane on a cocktail and we have permission for 2 more visits > that we are going to hold on to for the future and he will work with Duane's > Drs from now on and I can e-Mail him any time with questions. > > Bad news was Duane is co Q 10 deficient and this was treatable so if we > started this 8 years ago when we found out that there was some thing wrong he > probably would not be as dysfunctional as he is right now, it would have > stopped the progression because it is not a gene mutation it is a deficiency, > we could have actually had a life, Duane at this point is probably at the > level of a 5 year old in his understanding and his balance is very bad using > the wheel chair all the time when we go any where, he can not tolerate any > exercise at all. > > his diabetes is under control at this point which is good this has taken 8 > months to stabilize and educate me. > > I cant tell you how good it feels to have a Mito Dr finally > I have been very quiet on the list for a long time because this process has > been very time consuming and I have been very depressed over Duane's decline, > and feeling very alone and sorry for my self. > > Thanks for listening > Hugs As Always > Jan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Alice this is good news isn't is? warm hugs you are in my continual prayers. Vivian Quote Link to comment Share on other sites More sharing options...
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