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I know what your going through
Daun
Friday, January 16, 2009 at 11:29 PMre: I know what your going through
hummerlady54
Saturday, June 27, 2009 at 10:25 AMHi,
I failed with medications and had problems with a throat surgery and the Nissen Fundoplication BUT I have a very good motility specialist (GI doc) and a very skilled surgeon who has done the wrap many times. I'm wondering if you are with an HMO. That limits your choices a great deal. If you are free to choose your own doctors, keep going to specialists until find someone who offers tests, treatment and hope for your case. I was not considered a good candidate for the Nissen surgery (stomach wrap) and was I thoroughly informed of that fact. I had no other options to relieve the pain. Attitude is everything when you have an illness. Depression and bi-polar disorder runs in my family through I don't have those myself, I do understand how difficult it is to manage your stress and disappointment in your life right now. Please make sure you are getting help to manage your bi-polar disorder and depression. Fun and happiness is a state of mind. I have a number of post and you will find my life is anything but cheery on the surface but I have great hope for my future despite the problems with not only GERD and other serious medical problems but I never give up looking for doctors willing to help when others say nothing more can be done. I go to as neuropsychologist every week to help deal with my disability. It helps plus I learned biofeedback techniques to reduce stress and pain. It's been a god send for me. Medications didn't help me at all with the GERD and I'm allergic to many things including many ingredients in "soft foods". You may need to find friends who do something other than going out drinking. Find something you like to do like hiking, bird watching, astronomy, whatever but get out there in your free time and have fun. Discover what else you might enjoy. Tell youself every week you'll try something new. You might find a new hobby or passion in life. Infuse your life with things that are good for you on every level. I too don't go to potlucks or dinners much. I can't even use any formulas to drink due to allergies so weight loss is a problem for me. On the positive side, there are many CANs rather than CAN'T do-s. Seriously, after more than 20 surgeries and having another one in July, if I didn't stay hopeful and positive, I couldn't handle this. If your therapist isn't helping you much with your problem then change to someone else you click with. I found a wonderful neuropsychologist who deals with people with disabilities of all sorts. Believe me, he is the FIRST person who has understood the medical and psychological impact of serious medical problems I've ever met. Never give up on finding help. It's out there. I'm not a Pollyanna who just says things are fine. Your life can be rich and full. Choose which way you want to do and don't stop until you find help medically and psychologically. You can find my posts under Cricopharngeal Myotomy and Nissen Fundoplication or by my name Gloria Howey or Hummerlady. I'm not telling you life is easy---it's not.
re: I know what your going through
hummerlady54
Saturday, June 27, 2009 at 10:25 AMHi,
I failed with medications and had problems with a throat surgery and the Nissen Fundoplication BUT I have a very good motility specialist (GI doc) and a very skilled surgeon who has done the wrap many times. I'm wondering if you are with an HMO. That limits your choices a great deal. If you are free to choose your own doctors, keep going to specialists until find someone who offers tests, treatment and hope for your case. I was not considered a good candidate for the Nissen surgery (stomach wrap) and was I thoroughly informed of that fact. I had no other options to relieve the pain. Attitude is everything when you have an illness. Depression and bi-polar disorder runs in my family through I don't have those myself, I do understand how difficult it is to manage your stress and disappointment in your life right now. Please make sure you are getting help to manage your bi-polar disorder and depression. Fun and happiness is a state of mind. I have a number of post and you will find my life is anything but cheery on the surface but I have great hope for my future despite the problems with not only GERD and other serious medical problems but I never give up looking for doctors willing to help when others say nothing more can be done. I go to as neuropsychologist every week to help deal with my disability. It helps plus I learned biofeedback techniques to reduce stress and pain. It's been a god send for me. Medications didn't help me at all with the GERD and I'm allergic to many things including many ingredients in "soft foods". You may need to find friends who do something other than going out drinking. Find something you like to do like hiking, bird watching, astronomy, whatever but get out there in your free time and have fun. Discover what else you might enjoy. Tell youself every week you'll try something new. You might find a new hobby or passion in life. Infuse your life with things that are good for you on every level. I too don't go to potlucks or dinners much. I can't even use any formulas to drink due to allergies so weight loss is a problem for me. On the positive side, there are many CANs rather than CAN'T do-s. Seriously, after more than 20 surgeries and having another one in July, if I didn't stay hopeful and positive, I couldn't handle this. If your therapist isn't helping you much with your problem then change to someone else you click with. I found a wonderful neuropsychologist who deals with people with disabilities of all sorts. Believe me, he is the FIRST person who has understood the medical and psychological impact of serious medical problems I've ever met. Never give up on finding help. It's out there. I'm not a Pollyanna who just says things are fine. Your life can be rich and full. Choose which way you want to do and don't stop until you find help medically and psychologically. You can find my posts under Cricopharngeal Myotomy and Nissen Fundoplication or by my name Gloria Howey or Hummerlady. I'm not telling you life is easy---it's not.
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I had 2 Cricopharyngeal Myotomy surgeries and the Nissen
hummerlady54
Monday, August 10, 2009 at 06:19 PMHi Devin,
If your medical group cannot find a specialist to manage you condition fight to be sent to a GI Motility Specialist who is better equipped to handle your case. If you have an HMO, the process is frustrating but worth the fight. I have a PPO now but I did have HMO for many years. Appeal every denial until you have exhausted every avenue. Don't give up, Devin.
I just had my second CP Myotomy on July 22nd. I woke up with very little throat pain and knew my surgeon did not do the operation the way he had planned. He did not find that the muscle fibers had grown back together as expected but rather that my main problem is now throat spasms caused by my neurological condition (everything spasms in my body). I had to come to terms with my disappointment. The ENT surgeon did some cutting endoscopically but not much. I still get food stuck in my throat but it doesn't stay there as long (minutes instead of hours) and the pain is not as bad. It wasn't a total failure. I was told I might benefit from Speech Therapy training but I already tried that more than a year ago with no real benefit with swallowing better. I suppose they may bring up Botox injections again. Ho-hum....not a new topic for me since I have my arms injected every 3 months for severe spasticity. I won't let them inject my legs and weaken the muscles for fear I will not be able to walk. The key thing is that I adjust to the reality of my situation pretty fast and adapt ways to do things. Getting proper nutrition into my body is still a major challenge every day but I won't give up trying and searching for treatments that might help. I'm not foolish either---I do my research before I say yes. I do not regret the surgeries (2 CP Myotomies and 1 Nissen Fundoplication). The Nissen helped the most with the acid reflux. I'll keep trying to find a doctor who knows how to help me swallow better and lessen the spasms in my throat.
Hang in there, Devin...you are young and have much to live for. Keep searching and fighting for a life you can live with. Get help if you find yourself sinking into the abyss of depression. I'm not afraid to admit when I need someone to talk to: professional or a good friend. I also have a strong Chrisitan faith with many friend who prayer with and for me when times are tough.
Keep the post coming as to how you are doing. Keep asking questions, here and your doctor. It's your health you need to protect and improve. You have a vested interest in seeing it improved.
Sincerely,
Gloria
Hummerlady54
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Update
Drake.204
Monday, October 26, 2009 at 04:07 AMThought I would update this post. I went to the Cleveland and found that I still have acid reflux because my Hernia came out of the wrap and the doctore also made the wrap too tight. So I going back for another surgery over Christmas break; let's hope this one goes better then the last 2!!!
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I've been having difficulty swallowing for 4 months. I've had my esophagus stretched and now they want to try botox injections. I have GERD/LRPD their not sure which , a hiatal hernia and a thyroid nodule. I can't eat normal food, most baby food or very soft food. I can't go out to eat and mostly stay home cause I have to prepare my meals and it all revolves around my meds (Zegerid on an empty stomach and Reglan 1/2 hour before I eat). I don't like parties or social settings anymore because I can't eat or drink or have fun like everyone else. It's been horrible. Just wanted you to know you are not alone. Are you getting therapy - it helps me. I go to Cognative Behavioral therapy and hypno therapy along with the gastrologist and ENT.