My Chiari has reared its ugly head again, causing me heart problems, tachycardia! I had my surgery 19 years ago and wanted to put that horrid experience behind me! Wearing the halo brace, the pain when the tonsil fell, all of it. Right before Irma hit Florida, the pain/pressure began getting worse again! At the present time, my cardiologist found that an artery is being pinched at the site of my surgery (cerebellum). So now I have heart issues on top of everything else. At what point do you say no more! My PCP doctor has recommended that I come to the Mayo Clinic to be evaluated for my Chiari Malformation and the issues associated with it soon! I don' t know what to do! I am not a quitter and have fought this for so long! Can you provide me any advise? I live about four hours from the Jacksonville clinic. How can I go about being seen and my symptoms addressed while I am there? My doctor said he would forward all required information and make contact with you.
Bonnie, thank you so much! I am even willing to stay there in order to get my issues resolved. Can they do this? It is such a long drive to just get evuluated. Especially, when you know what the problem is! I have reports to take with me; but, I know they will want to their own. Understandably. Just want this to be over and get the ball rolling! Thanks again for all the information and guidance it is much appreciated!
My Chiari has reared its ugly head again, causing me heart problems, tachycardia! I had my surgery 19 years ago and wanted to put that horrid experience behind me! Wearing the halo brace, the pain when the tonsil fell, all of it. Right before Irma hit Florida, the pain/pressure began getting worse again! At the present time, my cardiologist found that an artery is being pinched at the site of my surgery (cerebellum). So now I have heart issues on top of everything else. At what point do you say no more! My PCP doctor has recommended that I come to the Mayo Clinic to be evaluated for my Chiari Malformation and the issues associated with it soon! I don' t know what to do! I am not a quitter and have fought this for so long! Can you provide me any advise? I live about four hours from the Jacksonville clinic. How can I go about being seen and my symptoms addressed while I am there? My doctor said he would forward all required information and make contact with you.
I've given up on life in the past. As a Christian, giving up is one step in releasing control of my life - I wasn't doing well at that - giving the control to a God I've learned to be faithful in love, in patience, in providing, and faithful in other ways. In one respect, giving up is a healing process. I know from experience that there's another side of giving up that's not at all healthy. And there are lots of things that are best given up - unhealthy habits and attitudes and such. I've found that giving up some things has been difficult, but with the help of a therapist it's been possible to recognize what I needed to give up.
So true Parus! People do not understand what we go through. Even family members. So where is your support systemr? My friends are great supports! I am rich this way! Guilt is another entire subject . You don't want the albatross around someone's neck! I am very sorry to hear of your Father! I advocate for other Chronic Pain People; because, I understand. I am very happy to have this support group! Jim, I do pray everyday and yes I do receive peace in knowing God is beside me! After all, I am a cat with 9 lives. already 2 have been used.
My Chiari has reared its ugly head again, causing me heart problems, tachycardia! I had my surgery 19 years ago and wanted to put that horrid experience behind me! Wearing the halo brace, the pain when the tonsil fell, all of it. Right before Irma hit Florida, the pain/pressure began getting worse again! At the present time, my cardiologist found that an artery is being pinched at the site of my surgery (cerebellum). So now I have heart issues on top of everything else. At what point do you say no more! My PCP doctor has recommended that I come to the Mayo Clinic to be evaluated for my Chiari Malformation and the issues associated with it soon! I don' t know what to do! I am not a quitter and have fought this for so long! Can you provide me any advise? I live about four hours from the Jacksonville clinic. How can I go about being seen and my symptoms addressed while I am there? My doctor said he would forward all required information and make contact with you.
My Chiari has reared its ugly head again, causing me heart problems, tachycardia! I had my surgery 19 years ago and wanted to put that horrid experience behind me! Wearing the halo brace, the pain when the tonsil fell, all of it. Right before Irma hit Florida, the pain/pressure began getting worse again! At the present time, my cardiologist found that an artery is being pinched at the site of my surgery (cerebellum). So now I have heart issues on top of everything else. At what point do you say no more! My PCP doctor has recommended that I come to the Mayo Clinic to be evaluated for my Chiari Malformation and the issues associated with it soon! I don' t know what to do! I am not a quitter and have fought this for so long! Can you provide me any advise? I live about four hours from the Jacksonville clinic. How can I go about being seen and my symptoms addressed while I am there? My doctor said he would forward all required information and make contact with you.
Yes I'm so at that point right now. My mom just passed away recently from cancer. It's been a real struggle. She died a horrible death. I'm glad I was with her but the pain it has caused me is awful. I have suffered depression and anxiety for over 20 years. The pain I have caused people and not even realize it has been terrible. My guilt I live with everyday is uncontrollable. Yet people swear your ok. They don't understand what we go through everyday. The thought of suicide is always there and you are fighting like hell for your thoughts to calm down. I've been on venafaxlin 300mg a day plus now seraquill. I've ask my physciatrist whom I only seen once if I could go off of venafaxlin and try something new. He said no. I've said something to a doctor recently and have no idea what I said. This has happened at a job before and now it's happening a lot. Has anyone ever had this happen before? Any suggestions? Should I look for another physciatrist?
Well, it seems getting any kind of help mental or physical is not going to happen. Nothing the therapist can do about the physical pain. Once it was seen in my medical chart that I was seeing a therapist for depression/anxiety/PTSD-you see, this sharing of information which is designed to improve the quality of care sounds good in theory and also damning when a doctor sees you have mental health issues. Now when I see a doctor/specialist they always point out my mental issues first and ask when I see my therapist again...first off the therapist is not "mine"!
Social anxiety does not help in the situations as I sit there like an obedient child and say nothing. My fault I cannot get help because of the fear of asking or appearing weak.
I am exhausted from trying. Back to the PCP for 6 months for the old age care giving...we do not deserve quality of life because many of us are seen as the dregs of society.
One speaks up even in a positive way or question a treatment one runs the risk of being fired as a patient because of noncompliance.
As far as getting help other than what I can do for myself I have given up... 🙁
Well, it seems getting any kind of help mental or physical is not going to happen. Nothing the therapist can do about the physical pain. Once it was seen in my medical chart that I was seeing a therapist for depression/anxiety/PTSD-you see, this sharing of information which is designed to improve the quality of care sounds good in theory and also damning when a doctor sees you have mental health issues. Now when I see a doctor/specialist they always point out my mental issues first and ask when I see my therapist again...first off the therapist is not "mine"!
Social anxiety does not help in the situations as I sit there like an obedient child and say nothing. My fault I cannot get help because of the fear of asking or appearing weak.
I am exhausted from trying. Back to the PCP for 6 months for the old age care giving...we do not deserve quality of life because many of us are seen as the dregs of society.
One speaks up even in a positive way or question a treatment one runs the risk of being fired as a patient because of noncompliance.
As far as getting help other than what I can do for myself I have given up... 🙁
I think that if a doctor begins an appointment by asking for details about my mental health, I would tell him that I'm not there to talk about that. Redirect him to the reason for my visit. Make him stay focused on your physical issue. If he pressed me, I would probably tell him that, yes, depression is worse because of the pain, not the other way around. If I can address the source of the pain, and find a way to reduce it, I'll feel better mentally. I'm pretty sure that if a doctor won't let go of issues that are really none of his business, I'd be looking for another one. My pcp does ask how I'm doing emotionally, but he just asks it because he cares about me. Usually he asks at the end of the appointment. On the other side, I talk about physical health issues with the therapist. I guess I'm just fortunate not to have had doctors minimize what I say or ask. I hate to say it, but it's likely that too many doctors treat male and female patients differently. Sexism is surely alive and well.
Do you have a way to write notes on your phone? I use Evernote, and I have a folder where I write questions to ask the doctor and what I need to talk about. If you have a way to do that, it's possible that when your doctor sees you using it, she/he might be adequately impressed to look at you differently. It's little things like that that make people pay attention. Just a thought.
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Bonnie, thank you so much! I am even willing to stay there in order to get my issues resolved. Can they do this? It is such a long drive to just get evuluated. Especially, when you know what the problem is! I have reports to take with me; but, I know they will want to their own. Understandably. Just want this to be over and get the ball rolling! Thanks again for all the information and guidance it is much appreciated!
Yes, you are right! I already know its my Chiari flaring and a pitched artery in my cerebellum. Scary when they have to mess with your brain again!
So true Parus! People do not understand what we go through. Even family members. So where is your support systemr? My friends are great supports! I am rich this way! Guilt is another entire subject . You don't want the albatross around someone's neck! I am very sorry to hear of your Father! I advocate for other Chronic Pain People; because, I understand. I am very happy to have this support group! Jim, I do pray everyday and yes I do receive peace in knowing God is beside me! After all, I am a cat with 9 lives. already 2 have been used.
Hello @oh_suzie_q, if you PCP is recommending you seek an appointment with Mayo Clinic, have you asked them to provide a referral?
Yes I'm so at that point right now. My mom just passed away recently from cancer. It's been a real struggle. She died a horrible death. I'm glad I was with her but the pain it has caused me is awful. I have suffered depression and anxiety for over 20 years. The pain I have caused people and not even realize it has been terrible. My guilt I live with everyday is uncontrollable. Yet people swear your ok. They don't understand what we go through everyday. The thought of suicide is always there and you are fighting like hell for your thoughts to calm down. I've been on venafaxlin 300mg a day plus now seraquill. I've ask my physciatrist whom I only seen once if I could go off of venafaxlin and try something new. He said no. I've said something to a doctor recently and have no idea what I said. This has happened at a job before and now it's happening a lot. Has anyone ever had this happen before? Any suggestions? Should I look for another physciatrist?
Well, it seems getting any kind of help mental or physical is not going to happen. Nothing the therapist can do about the physical pain. Once it was seen in my medical chart that I was seeing a therapist for depression/anxiety/PTSD-you see, this sharing of information which is designed to improve the quality of care sounds good in theory and also damning when a doctor sees you have mental health issues. Now when I see a doctor/specialist they always point out my mental issues first and ask when I see my therapist again...first off the therapist is not "mine"!
Social anxiety does not help in the situations as I sit there like an obedient child and say nothing. My fault I cannot get help because of the fear of asking or appearing weak.
I am exhausted from trying. Back to the PCP for 6 months for the old age care giving...we do not deserve quality of life because many of us are seen as the dregs of society.
One speaks up even in a positive way or question a treatment one runs the risk of being fired as a patient because of noncompliance.
As far as getting help other than what I can do for myself I have given up... 🙁
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I think that if a doctor begins an appointment by asking for details about my mental health, I would tell him that I'm not there to talk about that. Redirect him to the reason for my visit. Make him stay focused on your physical issue. If he pressed me, I would probably tell him that, yes, depression is worse because of the pain, not the other way around. If I can address the source of the pain, and find a way to reduce it, I'll feel better mentally. I'm pretty sure that if a doctor won't let go of issues that are really none of his business, I'd be looking for another one. My pcp does ask how I'm doing emotionally, but he just asks it because he cares about me. Usually he asks at the end of the appointment. On the other side, I talk about physical health issues with the therapist. I guess I'm just fortunate not to have had doctors minimize what I say or ask. I hate to say it, but it's likely that too many doctors treat male and female patients differently. Sexism is surely alive and well.
Do you have a way to write notes on your phone? I use Evernote, and I have a folder where I write questions to ask the doctor and what I need to talk about. If you have a way to do that, it's possible that when your doctor sees you using it, she/he might be adequately impressed to look at you differently. It's little things like that that make people pay attention. Just a thought.
Jim