of course i had to gt sick when we arrived, but by morning we were at dr. limms office on time. well at 1:35 he finally walked in, apologized profusely, which at that point I was livid. The appt was for noon and to be followed by a 2:OO In plastics. I had called prior to the appt telling his assistant that I did not have classical TN and perhaps it should be cancelled. she urged me to keep it and he would help guide me. I have an important appt there in May with ENT plastics, because I am livid and I do want to complain. Hubbie is trying to refrain me becuse we are returning, but no one should go through this. any advice. i m livid, nor am i traveling a few blocks.
Elaine, you know that I'm a plain talker. My advice is to settle down and deal with it. Next time don't schedule your appointments quite so close together. We all know that neurologists and other specialists frequently run into the unexpected during patient consultations. Some of your past consults have gone that way, doubtless inconveniencing people who scheduled to follow your appointment with the doc.
So -- not to be personally unkind, but still to say what I believe -- you're better off to cut the guy some slack and make allowances.
Regards, Red
I have decisions to make. such as pulling the upper teeth which is inflamned, and the botox guided emg. Neurology at hopkins has my records. Then theres the pump issue.
Even more important is this fluid issue. Artie couldnt believe how bad I looked. I made an appt with my internist to evaluate this. After I release the fluid, I return to normal. There is always a severe nerve pain attack right before this occurs. I am also due for the botox emg. Hopkins spasticity Dr. did not agree and neurology is evaluating this. Then theres the pain pump issue???
They knew my situation, since my notes preceded the visit. I also spoke to them about the schedule, and that I was not In dr. limms specialty, so it could have beeen changed. When you travel in poor health and spend thousands, I dont think this was appropriate.
I just dont sgree on this. It was well planned and they knew what they were dealing with. 90 minutes and traveling from florida is alot of slack to cut. I am really shocked by this episode.
elaine I sympathise with what your feeling, but because we depend on them so much we have to stay in their good books and not complain too much! as red said earlier the nature of their work means they often over run. I cant comment on your issues as they are too complex for me. good luck with it all xx
Elaine, I'm very sorry that this happened. When I went to see Dr. Carson for my pre-surgery appt, he had an emergency with a young child. Dr. Carson is the head of pediatric neurosurgery and makes exceptions for adult surgery for the MVD operation. I knew that he was held up for a very good reason…someone's bad luck…who happened to be a three year old little boy who needed the stint (in his brain) put into another place! His PA, Carol James saw me that day and in the last five minutes of a very long, thorough appt, Dr. Carson came in to meet me. He apologized, but I knew that Carol did all he would've done, so I said it was okay, kids come first in my book. When he did speak with me, it was a time I will never forget. He, by looking me in the eye while sitting in the chair next to me, convinced me by his presence, body language and choice of words and tone, that he would be able to help this pain I had come to know. I believed him. And, he did help.
Grace is not always easy to give. It's easy to become livid even if someone is 10 minutes late for our appointed time. We have a high emotional level due to the pain we endure and top that off with frustration towards a medical community who are supposed to help us, it's easy to be livid. But…is it helping your health? Is it helping the circumstances with the docs? Sometimes I really listen to my hubby when I'm in an emotional state that I can't find my way down from. He is wise enough to know that grace changes everything and when he makes the kind of call your hubby made to you, I listen and ask him to talk me through it to find the road to the grace that will change my heart thus changing my attitude.
We are not in a good way. As Red and Elstep has said, being on the docs good side can only benefit you. There have been times when I've painted over a situation (sometimes serious mistakes by MDs), where they have returned my grace with a service that was far above excellent. They "get it" when they mess up and when we grace them and give them slack or the benefit of the doubt, they return the favor with things we may have never had before. It's hard, but you can do this :-)
I'm very proud of you for trying. I'm very proud of you for tending to what "can" be done for yourself. You've done so well in arranging all the appt.s and making the plans to find the help you deserve. Now you deserve some peace of mind :-) Maybe after a long cry, you might feel better. This always helps me to pull out of a slump of sadness. I admire you Elaine :-)
everytime i return from these trips and accomplish nothing, i fall into depression mode for a while, but i do want to return to therapy. i am really frightened about where i am going with fhis and i am overwhelmed. i am waiting for hopkins neuro to make their decisions, so i can plan my next steps. it is the fear of the unknown that needs treatment as well. this is my pattern after a trip like this. it is not dr. limm but rather returning home empty handed over and over again. i need to grieve and i do need outside help. i would never deny help needed to someone. im jut wiped out right now. there are still more doctors to see. its been a decade and i yearn for a better place.
LyndaS said:
Elaine, I'm very sorry that this happened. When I went to see Dr. Carson for my pre-surgery appt, he had an emergency with a young child. Dr. Carson is the head of pediatric neurosurgery and makes exceptions for adult surgery for the MVD operation. I knew that he was held up for a very good reason…someone's bad luck…who happened to be a three year old little boy who needed the stint (in his brain) put into another place! His PA, Carol James saw me that day and in the last five minutes of a very long, thorough appt, Dr. Carson came in to meet me. He apologized, but I knew that Carol did all he would've done, so I said it was okay, kids come first in my book. When he did speak with me, it was a time I will never forget. He, by looking me in the eye while sitting in the chair next to me, convinced me by his presence, body language and choice of words and tone, that he would be able to help this pain I had come to know. I believed him. And, he did help.
Grace is not always easy to give. It's easy to become livid even if someone is 10 minutes late for our appointed time. We have a high emotional level due to the pain we endure and top that off with frustration towards a medical community who are supposed to help us, it's easy to be livid. But…is it helping your health? Is it helping the circumstances with the docs? Sometimes I really listen to my hubby when I'm in an emotional state that I can't find my way down from. He is wise enough to know that grace changes everything and when he makes the kind of call your hubby made to you, I listen and ask him to talk me through it to find the road to the grace that will change my heart thus changing my attitude.
We are not in a good way. As Red and Elstep has said, being on the docs good side can only benefit you. There have been times when I've painted over a situation (sometimes serious mistakes by MDs), where they have returned my grace with a service that was far above excellent. They "get it" when they mess up and when we grace them and give them slack or the benefit of the doubt, they return the favor with things we may have never had before. It's hard, but you can do this :-)
I'm very proud of you for trying. I'm very proud of you for tending to what "can" be done for yourself. You've done so well in arranging all the appt.s and making the plans to find the help you deserve. Now you deserve some peace of mind :-) Maybe after a long cry, you might feel better. This always helps me to pull out of a slump of sadness. I admire you Elaine :-)
Yes, this is a life changing event with your health and seeing a therapist, particularly one that knows what chronic pain is all about, would be so good for you. I pray you find the right person. Feeling down is so natural, please spend time to tend to yourself…it's hard to acknowledge all of the loss this tn brings. And with you, there are other things that are compromised health wise. It is a very hard road, but I KNOW you will find your way through it. Be patient with yourself as the answers to complex situations often require layers of steps to try to regain health and freedom. It's taking the steps one at a time is where I get impatient. I have to remind myself that negative self-talk is NOT who I am. I take a deep breath and allow myself all the time I need for this one step. Patience in my approach has helped a LOT, but it has not been easy. Besides, the easy road is for whimps, right? :-) Love you, dear Friend!
elaine48 said:
everytime i return from these trips and accomplish nothing, i fall into depression mode for a while, but i do want to return to therapy. i am really frightened about where i am going with fhis and i am overwhelmed. i am waiting for hopkins neuro to make their decisions, so i can plan my next steps. it is the fear of the unknown that needs treatment as well. this is my pattern after a trip like this. it is not dr. limm but rather returning home empty handed over and over again. i need to grieve and i do need outside help. i would never deny help needed to someone. im jut wiped out right now. there are still more doctors to see. its been a decade and i yearn for a better place.
LyndaS said:Elaine, I'm very sorry that this happened. When I went to see Dr. Carson for my pre-surgery appt, he had an emergency with a young child. Dr. Carson is the head of pediatric neurosurgery and makes exceptions for adult surgery for the MVD operation. I knew that he was held up for a very good reason…someone's bad luck…who happened to be a three year old little boy who needed the stint (in his brain) put into another place! His PA, Carol James saw me that day and in the last five minutes of a very long, thorough appt, Dr. Carson came in to meet me. He apologized, but I knew that Carol did all he would've done, so I said it was okay, kids come first in my book. When he did speak with me, it was a time I will never forget. He, by looking me in the eye while sitting in the chair next to me, convinced me by his presence, body language and choice of words and tone, that he would be able to help this pain I had come to know. I believed him. And, he did help.
Grace is not always easy to give. It's easy to become livid even if someone is 10 minutes late for our appointed time. We have a high emotional level due to the pain we endure and top that off with frustration towards a medical community who are supposed to help us, it's easy to be livid. But…is it helping your health? Is it helping the circumstances with the docs? Sometimes I really listen to my hubby when I'm in an emotional state that I can't find my way down from. He is wise enough to know that grace changes everything and when he makes the kind of call your hubby made to you, I listen and ask him to talk me through it to find the road to the grace that will change my heart thus changing my attitude.
We are not in a good way. As Red and Elstep has said, being on the docs good side can only benefit you. There have been times when I've painted over a situation (sometimes serious mistakes by MDs), where they have returned my grace with a service that was far above excellent. They "get it" when they mess up and when we grace them and give them slack or the benefit of the doubt, they return the favor with things we may have never had before. It's hard, but you can do this :-)
I'm very proud of you for trying. I'm very proud of you for tending to what "can" be done for yourself. You've done so well in arranging all the appt.s and making the plans to find the help you deserve. Now you deserve some peace of mind :-) Maybe after a long cry, you might feel better. This always helps me to pull out of a slump of sadness. I admire you Elaine :-)
Can I call you tomorrow sometime, just to hear your voice?
elaine48 said:
everytime i return from these trips and accomplish nothing, i fall into depression mode for a while, but i do want to return to therapy. i am really frightened about where i am going with fhis and i am overwhelmed. i am waiting for hopkins neuro to make their decisions, so i can plan my next steps. it is the fear of the unknown that needs treatment as well. this is my pattern after a trip like this. it is not dr. limm but rather returning home empty handed over and over again. i need to grieve and i do need outside help. i would never deny help needed to someone. im jut wiped out right now. there are still more doctors to see. its been a decade and i yearn for a better place.
LyndaS said:Elaine, I'm very sorry that this happened. When I went to see Dr. Carson for my pre-surgery appt, he had an emergency with a young child. Dr. Carson is the head of pediatric neurosurgery and makes exceptions for adult surgery for the MVD operation. I knew that he was held up for a very good reason…someone's bad luck…who happened to be a three year old little boy who needed the stint (in his brain) put into another place! His PA, Carol James saw me that day and in the last five minutes of a very long, thorough appt, Dr. Carson came in to meet me. He apologized, but I knew that Carol did all he would've done, so I said it was okay, kids come first in my book. When he did speak with me, it was a time I will never forget. He, by looking me in the eye while sitting in the chair next to me, convinced me by his presence, body language and choice of words and tone, that he would be able to help this pain I had come to know. I believed him. And, he did help.
Grace is not always easy to give. It's easy to become livid even if someone is 10 minutes late for our appointed time. We have a high emotional level due to the pain we endure and top that off with frustration towards a medical community who are supposed to help us, it's easy to be livid. But…is it helping your health? Is it helping the circumstances with the docs? Sometimes I really listen to my hubby when I'm in an emotional state that I can't find my way down from. He is wise enough to know that grace changes everything and when he makes the kind of call your hubby made to you, I listen and ask him to talk me through it to find the road to the grace that will change my heart thus changing my attitude.
We are not in a good way. As Red and Elstep has said, being on the docs good side can only benefit you. There have been times when I've painted over a situation (sometimes serious mistakes by MDs), where they have returned my grace with a service that was far above excellent. They "get it" when they mess up and when we grace them and give them slack or the benefit of the doubt, they return the favor with things we may have never had before. It's hard, but you can do this :-)
I'm very proud of you for trying. I'm very proud of you for tending to what "can" be done for yourself. You've done so well in arranging all the appt.s and making the plans to find the help you deserve. Now you deserve some peace of mind :-) Maybe after a long cry, you might feel better. This always helps me to pull out of a slump of sadness. I admire you Elaine :-)
I'm sorry to hear this was not a trip that ended with optimism. But know that after you are able to rest, you will feel strong again and will continue in a good direction.
thank you, but i seem to be running out of options. there was no mention made of any emergencies, so i dont know why the visit was running 90 minutes behind. when i offereed to cancel, it is something i should have dome. i had already contacted neurology so the appt was a poor choice/ when is the patient cut some slack or are the doctors overbooked/
I would not doubt for one minute that good docs are overbooked. How are you feeling today?
elaine48 said:
thank you, but i seem to be running out of options. there was no mention made of any emergencies, so i dont know why the visit was running 90 minutes behind. when i offereed to cancel, it is something i should have dome. i had already contacted neurology so the appt was a poor choice/ when is the patient cut some slack or are the doctors overbooked/
better. coming from a city filled with top notch centers and overbooked doctors has forced me into paying for a concierge dr. the issue is time. since my driving is minimal , artie cant sit for hours waiting. so even the not so great are overbooked and insurance allows just so much time per visit. money will always be the key factor in getting better care. who gets the transplant, the ex- vice president or the kid from the slums. even in socialized medicine, there are differnt treatment facilities for the haves and havenots. I admire and respect your belief, but there are some serious issues that need to be corrected. I have another appt so i cant complain, but I will not see Dr. Limm again since it was incorrectly booked and I should have listened to myself. I wont benefit from complaining. Unfortuneately the medical system is also a big business and the patients are suffering. Am i being quiet about grace or is it fear of retribution. I wish i could correct the wrongs or lessen the suffering that prevails in this system. I would like to believe that grace prevails, yet I keep seeing many doctors that are money machines and that is very sad in a country that has so much to offer. Im glad that you can see more good and its a point well made. What happens to the many that cant get the proper help, because theres no money. By the way, I am sure you read Dr. Carsons and Dr. Bohenes bios. It is inspiring.
On to the next step. How are you feeling? Sorry for rambling on.
Thank you for the kind replies. I do appreciate it.
Thank you for caring. We will speak soon. When is your appt. hugs,e
Dixie said:
I'm sorry to hear this was not a trip that ended with optimism. But know that after you are able to rest, you will feel strong again and will continue in a good direction.
Dixie, I thank you! My reply is above. hugs,e
elaine48 said:
Thank you for caring. We will speak soon. When is your appt. hugs,e
Dixie said:I'm sorry to hear this was not a trip that ended with optimism. But know that after you are able to rest, you will feel strong again and will continue in a good direction.
I do care, Elaine. I am waiting for my appointment. I will call this week and check my status on the list. Right now it still looks like May or June.
Hugs back to you!
Hello Elaine,
I've read your recent comments/posts here over the past (6) months and it's obvious that you are having an extremely rough and frustrating time of it. My heart goes out to you; as will my daily prayers for my fellow TN family on this Forum.
I'm a male, and therefore am in the vast minority (80F/20M) as far as facial pain/Type1 TN sufferers go. I assure you that when my TN attacks hit; usually for about (4) months with about a (3) week cease-fire with Satan--These electrical PAIN jolts are excruciating and vomit inducing. Those periods render me totally depressed and 90% incapacitated.
It's very difficult to hang in there, and I understand that, My Sister...Stay strong for a bit longer- I have a strong sense that things are going to greatly improve for you very soon. Love & May G+D Heal You, Rick
Rick, you sent a very powerful and positive message to Elaine. As one of her "Sisters", I thank you for sending it. Dixie
this is an amazing group of wonderful people. i have notes from jacksonville and he even has plans if the first procedures did not work. a right trigerminal nerve block???? I need red. I absolutely reccommend him at Heeken Orthoprdic. It is Dr. Sternberg was good.