Gloria,
Johns Hopkins runs a very, very close second, to the Mayo Clinic, in their ratings on neurosurgery, and then after that, there's a significant step downward, to the ratings for the other hospitals. The downside on Johns Hopkins is that they only rate about 58% on digestive system disorders, compared with the Mayo Clinic.
I'm pretty sure you're right about the neuro docs not wanting to hand you off to another group of doctors; however, I would think that your GP might be able to set you up with the doctor/hospital of your choice, (provided that the "new" doctor is open to accepting new patients), especially if you happen to have a GP who is not directly affiliated with the group of neuro docs that you have been seeing.
All that fiber certainly might have contributed to the MC problem. I assume that you are, (or were), taking antibiotics for the pneumonia, also, which could be a factor. Friends and relatives who make dishes "just for us", probably never realize how much anxiety that can sometimes cause for us. Bless their hearts.
Tex
A Serious Problem
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Focus on yourself, Gloria,
Whatever you had planned, whoever you might think is depending on you for anything, THEY DON'T MATTER.
This is a time when you need to tell yourself that YOU and only YOU matter. If you have to fight and scrape and bicker and whatever to get what you want then that is what you need to do and everyone else isn't important now, sister.
I know I don't know you well, but I think I understand your head because I am so much like you. YOU MATTER, you take care of you. What you said in your last post just breaks my heart. Screw DisneyWorld. I don't imagine the world would be better w/o you.
Whatever you had planned, whoever you might think is depending on you for anything, THEY DON'T MATTER.
This is a time when you need to tell yourself that YOU and only YOU matter. If you have to fight and scrape and bicker and whatever to get what you want then that is what you need to do and everyone else isn't important now, sister.
I know I don't know you well, but I think I understand your head because I am so much like you. YOU MATTER, you take care of you. What you said in your last post just breaks my heart. Screw DisneyWorld. I don't imagine the world would be better w/o you.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Mornin' Gloria,
It sounds as if you are on the right path by exploring all options. My best advice to you would be to do all of your fact-finding and then "go with your gut, your intuition" about the optimal treatment plan for you. It's OK to ask for info like how many brain-stem tumors are operated on by a particular institution in a given year and what the outcome has been. Also to ask about specific docs and their results. If after all of your detective work, you are still thinking Mayo Clinic, then GO FOR IT. Don't worry about the money - the hospital will make a long term payment plan if necessary. And you are absolutely worth it, right? We women tend to put ourselves last and instead worry about family issues and everyone else, but this is not a time to do that, as Stanz stated above. Do what you feel in your heart is the best for you and you alone. It's the one time in your life to be selfish and self-centered. You are entitled to do that right now.
I think you are wise to stop the bone med for now. And fiber overload aside, the MC might certainly be acting up due to stress, too. It would be good to plan to have some safe foods for the hospital stay. I can't imagine you will be on fluids for very long. And our experience here with hospital dietitions has not been great - you know much more about appropriate foods.
Lots of love and a
Polly
It sounds as if you are on the right path by exploring all options. My best advice to you would be to do all of your fact-finding and then "go with your gut, your intuition" about the optimal treatment plan for you. It's OK to ask for info like how many brain-stem tumors are operated on by a particular institution in a given year and what the outcome has been. Also to ask about specific docs and their results. If after all of your detective work, you are still thinking Mayo Clinic, then GO FOR IT. Don't worry about the money - the hospital will make a long term payment plan if necessary. And you are absolutely worth it, right? We women tend to put ourselves last and instead worry about family issues and everyone else, but this is not a time to do that, as Stanz stated above. Do what you feel in your heart is the best for you and you alone. It's the one time in your life to be selfish and self-centered. You are entitled to do that right now.
I think you are wise to stop the bone med for now. And fiber overload aside, the MC might certainly be acting up due to stress, too. It would be good to plan to have some safe foods for the hospital stay. I can't imagine you will be on fluids for very long. And our experience here with hospital dietitions has not been great - you know much more about appropriate foods.
Lots of love and a
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dealing with insurance is such a pain! However, most insurances have an "out of pocket limit" that means you pay 40% (because it's out-of-network) until you reach the out of pocket limit, at which point the cost is picked up. Often the out of pocket limit is higher for out of network than in network. You need to carefully read over the statement of benefits so that you understand and double check what you are told by insurance agents with what the benefits book says. In the course of my Medicare counseling, I have helped people with disputed claims, and never cease to be amazed at the incorrect information handed out by people who should know better. Also, I would encourage you to set up some sort of filing system and keep every track of every bill and correspondence you get. Have a notebook by the phone where you record every phone conversation including date, who you talked to, what about, and what was said.I'd have to pay 40% of the hospital cost, according to the insurance rep. I'm still checking to see if the doctors are part of the PPO. This is expensive surgery.
My heart goes out to you, as this is a very stressful time.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi Gloria, I haven't been around for awhile so I didn't know about your diagnosis. You will be in my prayers daily. I'm so upset that you have to deal with this plus everything else you have gone through. You are a fighter and I know you will find the right thing to do. Thank you for being a mentor to me and know that you are loved and admired. All my family will be praying for you, JoAnn
Gloria--
SO sorry to hear that you are facing a big decision in a relatively short time. As the others pointed out, that brings stress & anxiety. I am surely praying for you--for wisdom, for an excellent outcome, for provision (for food & meds that are kind to your GI), and for PEACE.
Certainly a different situation, but for my last labor/delivery, I called ahead and spoke to the dietician to ensure that they had meats & cooking methods for preparing veggies/rice that were free of my allergens. Then, I brought along a loaf of my bread, batch of muffins & brownies, energy bars, hempmilk, juice, etc.
YES, life would be MUCH easier without MC. You are an inspiration to us in the way you manage it.
SO sorry to hear that you are facing a big decision in a relatively short time. As the others pointed out, that brings stress & anxiety. I am surely praying for you--for wisdom, for an excellent outcome, for provision (for food & meds that are kind to your GI), and for PEACE.
Certainly a different situation, but for my last labor/delivery, I called ahead and spoke to the dietician to ensure that they had meats & cooking methods for preparing veggies/rice that were free of my allergens. Then, I brought along a loaf of my bread, batch of muffins & brownies, energy bars, hempmilk, juice, etc.
YES, life would be MUCH easier without MC. You are an inspiration to us in the way you manage it.
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Hi Gloria:
My prayers are with you at this difficult time especially with the decission you are now being forced to make.
I've been so busy making my God-Childs wedding dress that when the stress builds I've been doing a lot of meditating and resting in between breaks. I am so fortunate to have a friend that recently e-mailed me to tell me what was going on.
I wish I knew of a way to make this issue just disappear or even a quick fix to make it just GO AWAY.
My love, prayers and thoughts are with you my friend. I remember so well how you came and found me so many months ago to help me emotionally get well and accept this disease and for that I owe you so much. May God and all His angel's wrap their loving arms around you and help you through this time of need.
Love and God's Blessings:
JodiMay God and All His Angels, watchover, protect and guide you "One Day At A Time".
Gloria,
Wow - haven't checked the board in a few days and was surprised to see what you are dealing with. It sounds like you caught it early and even though it's a delicate surgery, at least it's operable. What kind of recovery time are you facing? Do you know what to expect? I'm sure the stress of this isn't helping your MC.
Take care - you're in my thoughts and prayers.
Mary Beth
Wow - haven't checked the board in a few days and was surprised to see what you are dealing with. It sounds like you caught it early and even though it's a delicate surgery, at least it's operable. What kind of recovery time are you facing? Do you know what to expect? I'm sure the stress of this isn't helping your MC.
Take care - you're in my thoughts and prayers.
Mary Beth
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Gloria,
You are such a special woman...keeping you and your family in our prayers.
Love,
Joanna
You are such a special woman...keeping you and your family in our prayers.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Gloria,
I'm so sad to hear about your further trials. I am confident that with God's help and your research that you will come to the best decision for you.
I certainly will have you in mind over the coming weeks.
Love, Shirley
I'm so sad to hear about your further trials. I am confident that with God's help and your research that you will come to the best decision for you.
I certainly will have you in mind over the coming weeks.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
I'm grateful for everyone's prayers and concern.
I went to another, more experienced neurosurgeon today. Neurosurgeon #1 gave me his name for a second opinion. This neurosurgeon is listed in the Chicago Magazine this month as one of the top neurosurgeons in the Chicagoland area.
He looked at my MRI slides and said that there appears to be some calcification on the tumor, which could mean that I've had it for quite some time. He doesn't recommend surgery at this time because I'm not having any complications. He thinks that I should get a CT scan to look closer at the calcification and get another MRI in 3-6 months to see if the tumor is growing. He said that he doesn't like to do surgery when there will be little or no improvement, especially when the patient isn't presenting with any serious problems. He said that it is pressing against my brain stem, but there is room for movement in the brain. Of course, I'd much rather not have the surgery and I tend to trust this neurosurgeon's evaluation because he's highly respected and experienced. I think it might be a good idea to get one more opinion from another neurosurgeon. I'm going to contact my insurance company to see if they concur.
DH came to the appointment with me and I had asked him to write down what the doctor was saying on a notebook I brought. Near the end of the appointment, I looked at the notebook, and it was empty. I said something to DH, and he didn't respond. I noticed that his eyes were closed. I asked him if he was OK. He began heaving. He started to cough and choke. There were two doctors in the room and a med student. Someone grabbed a wastebasket because he began to throw up. Someone asked me if he was a diabetic and I said he was. He had passed out. He still had some of the glucose tablet in his mouth that he popped in when he was starting to feel woozy. They put him on the examining table. By this time he was awake, but still woozy and out of it. To make a long story short, he ended up in ER so they could keep an eye on him and make sure his heart and vitals were OK. He'd eaten cereal for breakfast but hadn't had anything else to eat. He said he's never had his blood sugar drop so quickly. He usually can tell it's dropping and takes something. The glucose tablet probably never made it to his stomach. We're home and he's still sleeping at 5 p.m. He's pretty wiped out.
I told him that I need to take over his diet. I think we both need the same kind of diet: low sugar, complex carbohydrates, meats and vegetables. I've been trying to convince him to get tested at Enterolab to see if he has food intolerances. Maybe he'll agree now.
This has been a pretty eventful month for our family. I hope we can take it easy for a while.
Gloria
I went to another, more experienced neurosurgeon today. Neurosurgeon #1 gave me his name for a second opinion. This neurosurgeon is listed in the Chicago Magazine this month as one of the top neurosurgeons in the Chicagoland area.
He looked at my MRI slides and said that there appears to be some calcification on the tumor, which could mean that I've had it for quite some time. He doesn't recommend surgery at this time because I'm not having any complications. He thinks that I should get a CT scan to look closer at the calcification and get another MRI in 3-6 months to see if the tumor is growing. He said that he doesn't like to do surgery when there will be little or no improvement, especially when the patient isn't presenting with any serious problems. He said that it is pressing against my brain stem, but there is room for movement in the brain. Of course, I'd much rather not have the surgery and I tend to trust this neurosurgeon's evaluation because he's highly respected and experienced. I think it might be a good idea to get one more opinion from another neurosurgeon. I'm going to contact my insurance company to see if they concur.
DH came to the appointment with me and I had asked him to write down what the doctor was saying on a notebook I brought. Near the end of the appointment, I looked at the notebook, and it was empty. I said something to DH, and he didn't respond. I noticed that his eyes were closed. I asked him if he was OK. He began heaving. He started to cough and choke. There were two doctors in the room and a med student. Someone grabbed a wastebasket because he began to throw up. Someone asked me if he was a diabetic and I said he was. He had passed out. He still had some of the glucose tablet in his mouth that he popped in when he was starting to feel woozy. They put him on the examining table. By this time he was awake, but still woozy and out of it. To make a long story short, he ended up in ER so they could keep an eye on him and make sure his heart and vitals were OK. He'd eaten cereal for breakfast but hadn't had anything else to eat. He said he's never had his blood sugar drop so quickly. He usually can tell it's dropping and takes something. The glucose tablet probably never made it to his stomach. We're home and he's still sleeping at 5 p.m. He's pretty wiped out.
I told him that I need to take over his diet. I think we both need the same kind of diet: low sugar, complex carbohydrates, meats and vegetables. I've been trying to convince him to get tested at Enterolab to see if he has food intolerances. Maybe he'll agree now.
This has been a pretty eventful month for our family. I hope we can take it easy for a while.
Gloria
You never know what you can do until you have to do it.