Childhood Brain Tumor/ Appointment w/Mayo FL

Posted by jg1985 @jg1985, Dec 22, 2022

Hello, I am a Childhood Brain Tumor (Hypothalamic Glioma)survivor diagnosed in 1987 at the age of two. I had 3 forms of chemotherapy vp 16, Cristine & Lumistine. I also went through percious puberty at 3. My tumor was stabilized eventually & I was asymptomatic for 10+ years. Fast forward to 2006 I had some swelling in my brain & did cyber knife. About 5 years after I started having all sorts of problems. It started out as upper respiratory infections. Then I got fungal pneumonia 4 times. An endocrine panel was run & I was found out to have hypogonadism put on testosterone & thyroid meds. I was also on tons of steroids as a child & at that time which caused my adrenals to become lazy. I went to UVA & they concluded most of of symptoms were from poisoning from steroids & I was a healthy young man but I was still having problems (Iatrogenic Cushings). I have developed blood pressure problems, severely insulin resistant & much more. I am on blood pressure meds, Ozempic, testosterone, NP Thyroid, Metformin, Morphine (I'm in severe pain) I can't get off my couch & can't do much of anything I just exist.
I sent my records to Mayo almost 3 weeks ago. I had one call last week where someone asked me about a particular MRI that they claimed they didn't have & she wound up finding it. I have not heard anything & called two days ago to check on progress & lady put in a note for an update. I was told in the beginning that it would take 10-14 days. I have been to several hospitals including Shands, UVA, doctors in my area, & Sloan Kettering & no one will take a vested interest. I know I'm GH deficient but need testing amongst other things. I have been like this for 12 years steadily getting worse. I had to stop working in 2016 & I am now on disability. I was also told that Mayo is selective in who they take & I am deathly afraid that they won't help me. I worked so hard in sending my records to them because a lot of them are wrong. Mayo is my last hope. I'm severely depressed & if I don't get help & some quality of life how am I ever going to live my life? This is only part of my journey I'm just writing a condensed version. Just looking to find some information on Mayo because I was told they would call me either way to let me know if they are going to see me. Any help with Mayo Jacksonville would be appreciated thanks.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Hi @jg1985, oh gosh, I can see that you are worried about getting a response from Mayo Clinic. It may be taking longer in your case because our team of experts is carefully reviewing your complex medical history. Holiday schedules of admin staff may also play a role. I would continue to follow up next week after the holiday.

In some departments, Mayo Clinic receives more requests than appointments available. Each year more than 6,000 adults and children with brain tumors and other central nervous system cancers find the help they need at Mayo Clinic. If Florida does not have an available appointment, you may consider submitting your request to Brain Tumor specialists at Mayo Clinic Arizona or Minnesota.

In the meantime, I'd like to tag fellow members @rsfcowgirl @Jackiewizardof @bigmqama and others who had childhood brain tumor or complex conditions. As a community, members give and get support.

@jg1985, will you be family and friends during the holiday?

REPLY

@colleenyoung Yes, just me and my fiance. My mother lives two blocks away with her boyfriend. My mother is disabled herself & my fiance does the best she can however she also has some health problems. As far as friends go I don't have any friends. I have been isolated for so long with my illness. I have such horrible debilitating fatigue I can barely go to the store(I have my groceries delivered), go get my hair cut or even perform the simplest of things. I sometimes burn so badly in my hands & have horrible neuropathy that I'm in & out of the bathtub. I have horrible insomnia as well. I have hypopituitarism (possibly panhypopituitarism) but have not been treated right at all. My care has been terrible. I am very insulin resistant, have metabolic issues, blood pressure issues. To make matters even worse on top of radiation damage, chemotherapy steroids & brain tumor it was discovered last year that I have an adenoma on my left adrenal gland so I have no idea what that's doing to me as well. I sent all the information into Mayo. The lady who I spoke with said we would need to do one thing at a time which I believe between the adenoma, brain tumor & the hormonal deficiencies they are all causing the same problems. I am very depressed this is my last hope. I have been everywhere & to many reputable university hospitals with no luck. I keep hearing I'm a complicated case but no one has taken a vested interest in wanting to do more testing as well as listen. Thank you for answering me & providing me with something. Happy Holidays.

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Hi. I read your post and I can understand your feelings as you expressed them. Getting quality medical help for complex conditions is wearing, especially when you are the patient as well as the person doing all the case management.
You've had a life experience so far that has included incorporation of medical services thru much of it. I can relate to that too. We are perhaps oriented more seriously about life because of this. And we have a position of dependency on medical services that goes down very deep within us, in my experience, from that. It's valid but also is the source of much stress. Feeling powerless sometimes may contributes to depression.
Digressing for a moment, changes in health care insurance plus the COVID-19 pandemic havr disrupted+ overloaded the US healthcare system. This is national from the least to the greatest. It has impacted everyone seeking services. I'm mentioning this to put the current system in perspective, separate+ distinct from your previous experience. We all have to adjust our expectations.
When I contacted Duke about my medical issue, I encountered delay follow up, too. They too had trouble tracking my mailed images. It was stressful. I felt disregarded in the process. But it later all came together. I learned that the experts review the avalanche of requests in their off clinical time at Duke, such as after the day ends and on their lunch breaks, on nights + weekends. And they do this continuously. So I think of them as very knowledge people sacrificing their own time to try to help all the people reaching out in desperation.
Mayo Clinic is The Best. But I don't agree in placing your last+ final hour in them. I say this because, believe it or not, THERE'S MOST ALWAYS ANOTHER DOOR IF THE ONE YOU'RE KNOCKING ON DOESN'T OPEN. I learned this myself. Although it may seem otherwise, whatever situation your are facing, ➡️ There is ALWAYS HOPE ⬅️ We can't see it looking forward, but life confirms it when we look backwards.
While Mayo Clinic is the top, there are many excellent #2's. And sometimes a Doctor is unexpectedly around bc he/she had to deal with a family member who had a rare or complex condition+ to a special interest. Life has surprises.
Don't be discouraged by delay. Correct me if I'm wrong but you're not in an emergency status. You have time. Use that time to build your faith, fill your soul with hope+gratitude and increase your health in ways like practicing good nutrition+ improving physical conditioning.
I have a faith in the God of my belief, and I place my dependency in Him+ draw from His Well of Hope thru all times. In my life journey, this is my only means of coping + overcoming.
I am virtually sending you a Christmas present of a large box (with a bow) of Hope, a bag full of patience and a picture of your future that is not yet developed but it's on a background of sunny days.
My Best to you
Written but not reviewed for editing bc we're in a power outage and it's 7° F
(but I'm doing fine.)

REPLY
@rsfcowgirl

Hi. I read your post and I can understand your feelings as you expressed them. Getting quality medical help for complex conditions is wearing, especially when you are the patient as well as the person doing all the case management.
You've had a life experience so far that has included incorporation of medical services thru much of it. I can relate to that too. We are perhaps oriented more seriously about life because of this. And we have a position of dependency on medical services that goes down very deep within us, in my experience, from that. It's valid but also is the source of much stress. Feeling powerless sometimes may contributes to depression.
Digressing for a moment, changes in health care insurance plus the COVID-19 pandemic havr disrupted+ overloaded the US healthcare system. This is national from the least to the greatest. It has impacted everyone seeking services. I'm mentioning this to put the current system in perspective, separate+ distinct from your previous experience. We all have to adjust our expectations.
When I contacted Duke about my medical issue, I encountered delay follow up, too. They too had trouble tracking my mailed images. It was stressful. I felt disregarded in the process. But it later all came together. I learned that the experts review the avalanche of requests in their off clinical time at Duke, such as after the day ends and on their lunch breaks, on nights + weekends. And they do this continuously. So I think of them as very knowledge people sacrificing their own time to try to help all the people reaching out in desperation.
Mayo Clinic is The Best. But I don't agree in placing your last+ final hour in them. I say this because, believe it or not, THERE'S MOST ALWAYS ANOTHER DOOR IF THE ONE YOU'RE KNOCKING ON DOESN'T OPEN. I learned this myself. Although it may seem otherwise, whatever situation your are facing, ➡️ There is ALWAYS HOPE ⬅️ We can't see it looking forward, but life confirms it when we look backwards.
While Mayo Clinic is the top, there are many excellent #2's. And sometimes a Doctor is unexpectedly around bc he/she had to deal with a family member who had a rare or complex condition+ to a special interest. Life has surprises.
Don't be discouraged by delay. Correct me if I'm wrong but you're not in an emergency status. You have time. Use that time to build your faith, fill your soul with hope+gratitude and increase your health in ways like practicing good nutrition+ improving physical conditioning.
I have a faith in the God of my belief, and I place my dependency in Him+ draw from His Well of Hope thru all times. In my life journey, this is my only means of coping + overcoming.
I am virtually sending you a Christmas present of a large box (with a bow) of Hope, a bag full of patience and a picture of your future that is not yet developed but it's on a background of sunny days.
My Best to you
Written but not reviewed for editing bc we're in a power outage and it's 7° F
(but I'm doing fine.)

Jump to this post

PS after thought. I know that Scripps Clinic in La Jolla CA specializes in rare + complex cases. All admissions were by appt (vs ER) in the past at least. You might consider them too as a resource.

REPLY
@rsfcowgirl

Hi. I read your post and I can understand your feelings as you expressed them. Getting quality medical help for complex conditions is wearing, especially when you are the patient as well as the person doing all the case management.
You've had a life experience so far that has included incorporation of medical services thru much of it. I can relate to that too. We are perhaps oriented more seriously about life because of this. And we have a position of dependency on medical services that goes down very deep within us, in my experience, from that. It's valid but also is the source of much stress. Feeling powerless sometimes may contributes to depression.
Digressing for a moment, changes in health care insurance plus the COVID-19 pandemic havr disrupted+ overloaded the US healthcare system. This is national from the least to the greatest. It has impacted everyone seeking services. I'm mentioning this to put the current system in perspective, separate+ distinct from your previous experience. We all have to adjust our expectations.
When I contacted Duke about my medical issue, I encountered delay follow up, too. They too had trouble tracking my mailed images. It was stressful. I felt disregarded in the process. But it later all came together. I learned that the experts review the avalanche of requests in their off clinical time at Duke, such as after the day ends and on their lunch breaks, on nights + weekends. And they do this continuously. So I think of them as very knowledge people sacrificing their own time to try to help all the people reaching out in desperation.
Mayo Clinic is The Best. But I don't agree in placing your last+ final hour in them. I say this because, believe it or not, THERE'S MOST ALWAYS ANOTHER DOOR IF THE ONE YOU'RE KNOCKING ON DOESN'T OPEN. I learned this myself. Although it may seem otherwise, whatever situation your are facing, ➡️ There is ALWAYS HOPE ⬅️ We can't see it looking forward, but life confirms it when we look backwards.
While Mayo Clinic is the top, there are many excellent #2's. And sometimes a Doctor is unexpectedly around bc he/she had to deal with a family member who had a rare or complex condition+ to a special interest. Life has surprises.
Don't be discouraged by delay. Correct me if I'm wrong but you're not in an emergency status. You have time. Use that time to build your faith, fill your soul with hope+gratitude and increase your health in ways like practicing good nutrition+ improving physical conditioning.
I have a faith in the God of my belief, and I place my dependency in Him+ draw from His Well of Hope thru all times. In my life journey, this is my only means of coping + overcoming.
I am virtually sending you a Christmas present of a large box (with a bow) of Hope, a bag full of patience and a picture of your future that is not yet developed but it's on a background of sunny days.
My Best to you
Written but not reviewed for editing bc we're in a power outage and it's 7° F
(but I'm doing fine.)

Jump to this post

I am in an emergency. I have gone to many university hospitals(6-7 plus many in my local) I can't get off my couch & do the basics of everyday life. I get told I'm complicated and passed on. I've lost a lot of faith & very close in giving up. One can only take so much on top of the nastiness I've received from doctors because they can't figure me out so they give up. So I would say this is an emergency. I have tried to have a positive attitude throughout the years but when you can't even barely take care of yourself such as shower, brush your teeth get your haircut shop or even perform the daily basic activities of ones life that's a huge problem. The debilitating fatigue, hormonal issues, pain, severe depression and more are unbearable. So to to contact Mayo & get my records together was very difficult but travel there is going to be even more difficult because of what I mentioned above and for me to even try & go anywhere else out of state would be virtually impossible because of how bad I've gotten. I've done this record thing many times trust me I'm a pro at this. It's just when you've been to many university hospitals and they don't know what to do with you it's disconcerting. Just because a doctor or doctors have all these degrees etc means nothing if they can't help me it means nothing. Ive pretty much stepped back from everything if I get in I get in. I've been getting along so far & when I've had enough then I'll stop totally.

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I was also diagnosed with my brain tumor at 2 in 1987. I had brain surgery, 3 forms of chemo, steroids (poisoned 3 times causing Cushing's & Radiation not to mention contracting fungal pneumonia 4 different times) so I've been going through this through childhood & had a reoccurrence at 21 & it's been down hill ever since(I'm 37 now). This is just illness this does not include my personal life which has not been the greatest either.

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@jg1985

I am in an emergency. I have gone to many university hospitals(6-7 plus many in my local) I can't get off my couch & do the basics of everyday life. I get told I'm complicated and passed on. I've lost a lot of faith & very close in giving up. One can only take so much on top of the nastiness I've received from doctors because they can't figure me out so they give up. So I would say this is an emergency. I have tried to have a positive attitude throughout the years but when you can't even barely take care of yourself such as shower, brush your teeth get your haircut shop or even perform the daily basic activities of ones life that's a huge problem. The debilitating fatigue, hormonal issues, pain, severe depression and more are unbearable. So to to contact Mayo & get my records together was very difficult but travel there is going to be even more difficult because of what I mentioned above and for me to even try & go anywhere else out of state would be virtually impossible because of how bad I've gotten. I've done this record thing many times trust me I'm a pro at this. It's just when you've been to many university hospitals and they don't know what to do with you it's disconcerting. Just because a doctor or doctors have all these degrees etc means nothing if they can't help me it means nothing. Ive pretty much stepped back from everything if I get in I get in. I've been getting along so far & when I've had enough then I'll stop totally.

Jump to this post

I'm sorry I misunderstood your situation. I understand you feel desperate and your life has collapsed. And your not connecting with the care you need. And I'm so sorry your path had been so burdensome in several ways.
I'm wondering if being admitted as a scheduled in patient for comprehensive evaluation is the approach for you. Is that what you are seeking? That would require one Dr. to orchestrate that. Your needed level of care can't be given by the ER + sending records for a review hasn't resulted in your getting connected. As a suggestion, perhaps the focus of your efforts right now should be getting a Dr for the primary role of case management and not even treatment if possible.
Also, have you considered consulting with your insurance company? They have a stake in your outcome and often have ppl who can offer very good direction regarding providers and options.
Another option might be to contact individual orgs who specialize in some of your diagnoses. They are dedicated to providing all current information and are usually directly+ activity associated with specialists. They may be able to get your 'foot in the right door' for treatment you are searching for.
We're in the holiday season AND the viral resurgent season right now. Again, the competition for medical space is high. Everyone is dealing with the same challenge. Prepare yourself for delay of some kind. You can do that. You have to change your expectations+ find it within yourself to get the strength to hold on
I believe you need the benefit of counseling right now. I urge you to get together with a professional or a religious counselor. Or find a self help group for pppl w medical problems. Because you've been depleted of stamina + you're suffering discouragement + depression. You can't let that take over your life. They are side effects of your situation. Those feelings are like a poison that can do more damage than a medical condition.
If you're not familiar with therapeutic counseling, I'll share my experience. I obtained both types of counseling and did so at different times for different issues. Two years ago I went to a Dr to discuss a diagnosis w a poor prognosis+ I wanted to talk about my feelings + thoughts. He opened up the area of my lifelong medical experience. This helped me SO MUCH in understanding myself in ways I never did before.
You convey distress in your communication. Most of us here can relate. I think it's fantastic that you tapped into this moderated medical forum. And I hope you continue to share with us. This is one resource. And a uniquely trustworthy one (that I know of). But it doesn't replace professional care.
I'm going to be praying for you and I'm sure others who read but don't post will also. I used to call my religion's prayer lines when I felt desperate. That's something to think about too.
I'm now in 1° F w a wind-chill of -22°F and tho we have the power back, it's only 37° in here. And it's the middle of the night. So apologies for any typos etc
Try to envision good things for yourself. More another time..

REPLY
@rsfcowgirl

I'm sorry I misunderstood your situation. I understand you feel desperate and your life has collapsed. And your not connecting with the care you need. And I'm so sorry your path had been so burdensome in several ways.
I'm wondering if being admitted as a scheduled in patient for comprehensive evaluation is the approach for you. Is that what you are seeking? That would require one Dr. to orchestrate that. Your needed level of care can't be given by the ER + sending records for a review hasn't resulted in your getting connected. As a suggestion, perhaps the focus of your efforts right now should be getting a Dr for the primary role of case management and not even treatment if possible.
Also, have you considered consulting with your insurance company? They have a stake in your outcome and often have ppl who can offer very good direction regarding providers and options.
Another option might be to contact individual orgs who specialize in some of your diagnoses. They are dedicated to providing all current information and are usually directly+ activity associated with specialists. They may be able to get your 'foot in the right door' for treatment you are searching for.
We're in the holiday season AND the viral resurgent season right now. Again, the competition for medical space is high. Everyone is dealing with the same challenge. Prepare yourself for delay of some kind. You can do that. You have to change your expectations+ find it within yourself to get the strength to hold on
I believe you need the benefit of counseling right now. I urge you to get together with a professional or a religious counselor. Or find a self help group for pppl w medical problems. Because you've been depleted of stamina + you're suffering discouragement + depression. You can't let that take over your life. They are side effects of your situation. Those feelings are like a poison that can do more damage than a medical condition.
If you're not familiar with therapeutic counseling, I'll share my experience. I obtained both types of counseling and did so at different times for different issues. Two years ago I went to a Dr to discuss a diagnosis w a poor prognosis+ I wanted to talk about my feelings + thoughts. He opened up the area of my lifelong medical experience. This helped me SO MUCH in understanding myself in ways I never did before.
You convey distress in your communication. Most of us here can relate. I think it's fantastic that you tapped into this moderated medical forum. And I hope you continue to share with us. This is one resource. And a uniquely trustworthy one (that I know of). But it doesn't replace professional care.
I'm going to be praying for you and I'm sure others who read but don't post will also. I used to call my religion's prayer lines when I felt desperate. That's something to think about too.
I'm now in 1° F w a wind-chill of -22°F and tho we have the power back, it's only 37° in here. And it's the middle of the night. So apologies for any typos etc
Try to envision good things for yourself. More another time..

Jump to this post

To clarify – I was trying to say that getting a doctor – not for treatment from him/her – but as a medical case manager- might be very helpful. That would enable you to have a Dr without that Dr having to be responsible for giving care which is beyond his/her level of expertise.
I want to also add that life isn't fair. Everyone knows that as a statement. But some people know that as their reality. Like you. Like me. Like others on this forum. We often receive the gift of life thru medical intervention. But then we have to go forward living the hand we were dealt. Sometimes I wish that when the Drs turned off the respirator I was on as a young child of 6, with my parents there to say 'Goodbye,' that I passed away easily instead of suddenly become conscious + breathing. My life has not been easy. Or fair. I can't say I've had a good life, but I can say that what I've done with the life has been to do good for other ppl + animals. I just decided that if I can't have a good life myself, I'm going to what I can to help someone else, or animals. I have not had a life of happiness. Or health. But I feel deeply satisfied with what I've done to make the best of the hand I was dealt. Much of the time, what I needed came from God, not from Drs or others such as government. We have 8 Billion ppl now in the world. When you look at it in total, we who live in the Western world have our worst day better than half the world's best day. That being said, it doesn't change the experience that life is just really hard sometimes.
Praying for you.
🙏🌻

REPLY
@rsfcowgirl

To clarify – I was trying to say that getting a doctor – not for treatment from him/her – but as a medical case manager- might be very helpful. That would enable you to have a Dr without that Dr having to be responsible for giving care which is beyond his/her level of expertise.
I want to also add that life isn't fair. Everyone knows that as a statement. But some people know that as their reality. Like you. Like me. Like others on this forum. We often receive the gift of life thru medical intervention. But then we have to go forward living the hand we were dealt. Sometimes I wish that when the Drs turned off the respirator I was on as a young child of 6, with my parents there to say 'Goodbye,' that I passed away easily instead of suddenly become conscious + breathing. My life has not been easy. Or fair. I can't say I've had a good life, but I can say that what I've done with the life has been to do good for other ppl + animals. I just decided that if I can't have a good life myself, I'm going to what I can to help someone else, or animals. I have not had a life of happiness. Or health. But I feel deeply satisfied with what I've done to make the best of the hand I was dealt. Much of the time, what I needed came from God, not from Drs or others such as government. We have 8 Billion ppl now in the world. When you look at it in total, we who live in the Western world have our worst day better than half the world's best day. That being said, it doesn't change the experience that life is just really hard sometimes.
Praying for you.
🙏🌻

Jump to this post

I was not supposed to live & doctors at Sloan Kettering didn't have much hope for me(1988) I failed a new form of chemotherapy they had at the time & they tried an older form which shrank the tumor by a 1/3. I had 10 years of "normalcy" before crap hitting the fan & by then I was an adult. I was never monitored the correct way to begin with. Never told to follow up with an endocrinologist meanwhile I had a hypothalamic glioma. I went through percious puberty at 3 & put on Lupron Depot because of growth & to seal the growth plates which reading about Lupron Depot now I have read horror stories, not to mention the age I was when I was diagnosed with my tumor(2 years old), the chemos I was on (VP 16 & Cristine & CCNU). All the steroids too. I have been told that I am actively dying. I have tried to get hospice(I don't qualify). Services in my area are horrible. I keep getting recommended to go to a teaching hospital & I am a complicated case. When I get to the teaching hospital I get the same thing. As far as therapy goes, I have been to therapy & therapists don't understand either. They recommend things that I have already done or that I am not physically able to do anymore. Life is more than just breathing because I hear a lot of times "at least you are alive", but at what price? They were worried about saving me at the time but we're not thinking toward adulthood. I'm technically not even supposed to be here so the problem is what I have been told since I am not supposed to be here there is no one to compare me too & I'm one in a million so all I do is suffer. I have cats that make me happy & I do try to have some joy. Unfortunately, as time goes on I'm getting worse so all those things are fading.
I have Medicare and receive disability. So things are a little different than traditional insurance. I have had to get myself into these hospitals including Mayo because I don't have anyone really following me except for a local Endo who is clueless & I'm lucky I get what I get & I have a home heai agency I see for a GP which can't do much for me. Other than that I'm on my own & it's always been that way.

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Judging what most of what I have been reading I am not counting on Mayo excepting me. I have learned not to get my hopes up about things because a lot of times it doesn't work out or there's some sort of catch. The only reason why I was a little upset is because when I originally talked to someone in Endocrinology concerning my records is that once they received the records(which I know they have because I called & verified that they received them) that it would be 10-14 days for a decision. I had some one call me a week and half ago asking about a particular MRI that she stated that they didn't have & I told her they had & she looked again & found it. She then asked me what my goal was which was a little disconcerting since I had enclosed a letter with my records explaining my goal, a table of contents, a list of all my medicines, a docie of all my treatments I have received as well as the potential side effects/things that can happen as a result of those treatments & medications. I sent them all my radiation records, MRI readouts, blood work & past medical history along with medical notes all in order. I made it so easy to look at it so it would not be difficult to look at & to understand. Finally, I was told they had appointments for January but February had not opened yet at that time so I was made to understand that it would not be long to look at my records & for them to come to a decision & if I was able to get in there would not be much of a wait that's why I'm a little upset is because of what I was told which obviously isn't the case.

REPLY
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