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Back Home Early from Mayo


Jenn202
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Well I just got home today from my Mayo trip.

I am not sure what to say about any of it. Unfortunately it was everything I wasnt expecting.

I ended up seeing Internal Medicine which was the biggest joke...the Dr was arrogant, pompous and rude.....

It was everything I could do not to punch him. :)

I found out that I did not have any neuro appts... even after I called my Dr here all last week making sure he had made another phone call to referr me to Dr Low...

I ended up getting a neuro appt..but not until the 22nd of June!! Like we could afford to just fly back on the whim!.. and they had me seeing Dr Freely ( sp?) not Dr Low... ;)

We ended up sitting in the neurology office for 5 hours yesterday to see if we could get in to see Dr Low... Unfortuately ( or fortunately however I look at it) Dr Low could not see me until The 7th of June which is next Tues... :P

The clincher is that I caught a bad cold while I was there and by yesterday was so ill I could barely sit......

Last night It got worse ( I think bronchitis of some sort) so we had to fly home this morning and bag the rest of the trip. :(

Botton line is The testing I recieved there were all the very same tests I have had over and over at other places... nothing new or exciting. The Dr's I met were far from quality as far as thinking otuside the box ..seemed very robotic and awefuly clinical......

I'm sorry I am going off tonight about this, I am just so bummed that it turned out the way it did. And this is in no way to disrespect anyone elses opinions or experience at Mayo... I know that we all have different experiences and different perspectives, so forgive me if I am comming off harsh.

I just feel defeated, out of lots of money, and For myself, I could have gone and had those same tests repeated near me.

I think a return visit to dr Grubb wuld be far far worth more than trying to come up with the money to go back to Rochester.

Well thats my story... I;m going to go put my head down and hope I get over this bug aaaaaaaaaahhh!! LOL :(

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Hi,

So sorry your trip was for nothing and you lost your time and money. I can totally relate to your disappointment because I went through the same thing when I went to Vanderbilt. If we could only foretell the futre!

Hope you feel better soon.

Ernie

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oh jenn,

i am so sorry about your trip. that is so disheartening. it is just overwhelming to make such a big journey and have it turn out so miserably. especially when you did soooo much planning and checking up ahead of time.

i still recovering just from visiting my PCP this week...so i cannot imagine how wiped and exhausted, not to mention emotionally zapped, you are feeling...

i just wanted to send you extra hugs tonight.

i, too, have made big trips like you to see the 'big shots' and had it be so disappointing and disheartening i cried for days afterwards. we don't want to be in this position...and as much as we try to stay on top of things and advocate for ourselves, the medical profession can have so much power over us. that feeling of being at their mercy is so horrible.

i wish i knew what else to say...all i know to say is that i am so sorry...

sometimes, later, long after these horrible experiences i am able to find meaning, etc. in them...but at the time, it is all i can do to endure, survive, etc...

extra hugs your way tonight...

on a funny note...corina just had a bad drs. experience and i told her she should have given the dr. a knuckle sandwhich...she said, did you mean i should have punched him?? then, i read your post and you said it was all you could do not to punch the dr....so....i thought of the knuckle sandwhich phrase! and, give him a shot to the moon while you are at it! or tell him to go jump in a lake!

when i have bad experiences like you just had, i try to repeat what the 'good angel drs.' have told me...i tell it to myself over and over again. basically that sometimes you get something out of an appt. and sometimes you don't...and not to let the drs. who were clueless to take your emotional energy.

okay, i just said that and it sounds horrible...b/c that is so much easier said than done. but, i try so hard not to let the drs. 'win' when they disappoint me so much.

better shut up before i put my foot in my mouth any more!

i am trying to help and just want so much to reach out to you b/c my heart is breaking for you...energy and time are precious and it is so frustrating to spend all of that to go to an appt. that doesn't work out.

if you didn't go though, you might always wonder...what if? you did it. you went. you were brave. you were courageous.

there must be some reason you weren't meant to see dr. low...but i have no idea why or what that is!!!!

stacey has taught me to do 'virtual screams'....ready???

aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrgggggggggggggggggggg

gggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!

give it a shot! no exertion required...won 't even aggravate your bronchitis! it feels good!

okay, going to finish my book on tape, as i feel pretty green myself!

hang in there jenn, we're with you!

later alligator!

emily

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I'm so sorry you've had such a disappointing experience!! I went to Rochester last year and aside from the cardiology consult I had there, everything else was a MAJOR disappointment. I've been to the Mayo in Jacksonville twice now and my experience has been vastly different there--they have been much more compassionate and helpful to me. However, in both places I did learn new things so that was good.

I know it can be difficult when you rely (both physically and emotionally) to get help from these Dr's. Unfortunately, we live in a world where many people don't understand or even want to try.

Just know you have us to rely on for support and we do care about you and are sending warm thoughts and healing energy your way!

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Lisa, Persephone, Ernie, and Emily - I feel better just from hearing your words of encouragment. Thank you Thank you to all of you!!

I know that all of you have experienced the same type of thing ....I guess its the nature of the illness....

I always see myself as a strong person pretty able to judge myself over anyone else. But I have to say Mayo actually made me question myself again and freak out that maybe there was something else wrong with me that 10,000 tests havent found yet.....

Emily - You are so right about had I not gone... I would have questioned myself forever about the what if's.... I guess the Universe is keeping me from seeing Dr Low for some reason...

My husband thinks maybe its to protect me, that the visit might have been damaging to me. I guess we will never know.

I havent heard the term "knuckle sandwich" in so long!!! LOL My grandfather used to say that to us as a joke if we were acting up as kids...

I think there are MANY Dr's that deserve one!

Persephone: I never asked how was your trip to Dr Mathias? I hope MUCH better than mine??

Good night.. Thank you for making me feel so much better tonight. And againg sorry for the rant, I just had to get it out so that I could be done with it ;)

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I hope you feel better soon. I've never been to Mayo but I heard it's a big trip with alot of time and money involved. I'm sorry you didn't have a good experience. Hopefully you'll be able to see Dr.Grubb. Everyone is raving about him. Maybe I should make an appointment.

Dayna

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Guest Julia59

Jenn,

I'm so sorry it didn't go well at the Mayo. Sometimes things just don't get organized on their end, and it's very unfortunate for the patient when they travel all that way only to have disappointment.

Please know that i'm sending blessings, hugs and all kinds of good vibes your way.

I went all they way to New York, and the Docs were very nice, but it didn't go as planned eaither. They did confirm what the other NSG said, but I didn't get to see all the Docs eaither, and the NSG had to meet with me in the conference room at North Shore University Hospital in NY---not The Chiari Institute, as the NSG had an emergency that day.

It was not nearly that bad for me as it was for you----because I still got answers.

I hope that you can get the help you deserve soon.

Hang in there, and I hope your cold doesn't get the best of you. Push those liquids until you think you can't take anymore, and before you know it everything will start flushing out of you. Water, juice, gatorade, smoothies, slushes----the frozen stuff really soothes your throat, and helps with the swelling of the sinuses too. I find hot spicey foods help clear the sinuses---if you can tolerate them.

For me it's not how spicey the food is---it's the texture----ugggg-the dastardly gut motility issues............... :D

Julie :0)

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Jen,

My first trip to mayo was in 1998 and I had to see a ped. doctor because I was only 17. I came back a year ago this past Feb and I saw the Dr. that they were sending you too. It was Dr. Fealy. He is an older gentelman, but I found him to be very wise and very knowledgeable. He finally gave me the answer that I have been waiting six years to hear. I guess that it isn't as disapointing when I go up there because it is only a three to four hour drive compared to all that travel that you had to do.

I am so sorry things didn't work out for you. I know how spendy and stuff travel can be. I thank goodness have insurance that pays travel and hotel. Well at least some of the cost.

I hope things get better and you get to see Dr. Low. I hear he is good, although I have yet to see him. I am doing much better though after seeing Fealy. Although I have a funny story about my appointment with him. I went to do a tilt table before I saw him and they do some kind of test where they give you a shock. Well they told me that it wouldn't hurt and I would be fine. So when I felt this extreme shock going through my body I jolted and felt like a pansy. The lady turned off the machine in a hurry. Turns out that the guys had come to fix the machine the night before and had turn the nobs to the highest level, some 4 times what it should have been. She said she couldn't imagine the shock I just had, I replied "wanna?" I had marks on those spots for weeks.

So good luck. I hope all turns out well.

Shelby

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Jenn,

what Emily said is sooo true (I think it was Emily, not sure now). I thought of that myself after having a very disappointing doctors visit last week. When we drove home I told my husband: at least we now know we don't have to see this doctor ever again. He isn't worth our time and energy! I don't know why, but it made me feel better!

Take care,

Corina

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Thank you so much everyone :)

Steph - Never ever apoligize for anything!! You are a tremendous help and have lots of great info and advise to give.... I always value your opinion :)

you gave me some great tips!... The Radisson was a wonderful place to stay...the people were really nice, newly renovated, and right near the hospital.

I thought of you drinking all that lemonade when I was at Subway eating lunch!! LOL

Its not anyones fault that my Dr and Mayo screwed up...unfortunately its just how it happened. And maybe had I seen Dr Low it would of been a worth while visit but I guess I will never know.

I am sure had my Dr in Bioston got it together and made sure that Low saw me things would have gone much easier......

But I think once you get in the system at Mayo its fair game.

Oh well.... I guess I have to put it behind me. I did everything I could on my part to make it work short of breaking into Dr Low's office and dragging him out by gunpoint! LOL

Corina: You are so right...it helps to just say it was not meant to be and put it behind you....

Shelby: I am so glad that Dr Fealy was able to help you ...... I had that shock test also... It was painful enough on the low level I cant imagine what it was like on high!! :D You poor thing, and here you thought you were being a baby! LOL

Julia: I am sorry that you had a similar experience in NY, but I am so glad to hear that you at least got to see some Dr's and get some answers...even though not all you were expecting.

Morgan: I'm kind of beginning to agree that the big Dr's are not always the best..although I have to exclude Dr Grubb in that list b/c he was so kind and gave me so much valuble info and time. I guess when you go to Mayo or the others its a toss of the coin.

Roselover and Dayna: Thank you for your support! Dayna... I am sure I sound biased, but I would see Dr Grubb if I could also....

You guys are wonderful... Have a great weekend.. :)

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Hi Jen,

I know you will pull through. The first days are the worst but then as time passes by the wound will heal. What makes it hard is that it was Mayo. When we go to a big place like that we have high expectations. Makes the disappointment much harder.

Ernie

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Hi Jenn, I am so sorry for your experience. I went to Mayo, FL some years ago and without fully realizing it, I had all my eggs in one basket (just read that from EM!) and my expectations were through the roof. ALso, my family and friends just knew if I could get into Mayo, I would get a treatment plan that would return me to health. The disappointment I felt at receiving no new information was devastating and having to tell my family/friends that nothing had come from the visit brought me down even further. Don't let this happen to you!

You gave it your best shot. They should have done more, but didn't. So, on to your next plan which sounds better for you. I am sorry you picked up a bug on top of everything else and then having to fly on top of that. But, you made it! Rest well and don't second guess yourself about going or anything else.

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geneva,

that was really well put...the after effects of it all can be really hard to deal with...

when i get back from a 'big appt.' the phones are ringing off of the hook to 'hear the news' and you can just hear the confusion on the other end when you try to tell people you 'aren't fixed'...

emily

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