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Scared now...Not sure what to think

Oct 22, 2014 - 68 comments

So I've been pretty private about this. I have not told anyone on here. But now I'm opening up about it because something MAY have changed.

Okay one part of it some people may remember me mentioning. About a year or so ago I was having back pain. I got in for an MRI in January of this year and they said everything looked okay. I just had another one done 2 weeks ago. I will go into the results after.

About 4 years ago I was diagnosed with a brain tumour. I have regular mri's to monitor it. And so far has presented to be benign. I also had an MRI 2 weeks ago for a new MRI on my head.

I called my family Dr last friday because she gets a copy of the results as well as the neurosurgeon that requests the MRI. The receptionist said she would get the nurse to call with results. I got a call from the office this morning and she wants an appt with me to discuss the results of both mri's. She has NEVER asked for an appt in 4 years of doing this. But the appt isn't until next Thursday. GAH! A friggin week of fretting and worrying!

I called the neurosurgeon's office and left a voicemail to see if the receptionist would give me the results before next week.

I'm scared sh!tless because she never asks for an appt. I've always gotten the results over the phone. Which leads me to believe that there has been a change in either the brain tumour or something has shown up on my spine.

Please if you have some prayers to spare, I could use them. I really don't want anything to be wrong with either, but I REALLY don't want it to be the brain tumour. I was told if there was even the slightest bit of change on the tumour that it would have to be removed surgically.

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by spider6, Oct 22, 2014
Oh dear girl, I'm sorry for your anxiety about this....that you may have to wait......my immediate thought is.....would they really be so nonchalant about the length of time you have to wait to see them?  Is this normal protocol?....I'm hoping they just lost their mind and haven't realized that this is not your normal course of events while dealing with this....maybe someone thinks you've done it this way all along.....call them!  Say...man, can ya give me a break and let me know what I'm having to wait a week for.?  Bless and try not to drive yourself mad yet. xo

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by Shannon79, Oct 22, 2014
When the receptionist told me my Dr wanted me to book an appt I said why? She never wants an appt. I always get results over the phone. And her response was I'm not sure. I just talked to the Dr and she wants to book an appt to see you.

I'm trying not to have a breakdown, but it's getting harder and harder knowing this is not the way we do it.

I can do this. I can hold it together. It's only a week right?!?!

Avatar universal
by MyMelBgirl, Oct 22, 2014
When I had my lumbar MRI's I was called and given results requiring surgery by the doctor each time. Maybe the doc can do the same for you? I hope everything's ok & that you are worrying for nothing right now.  Hopefully you can get some answers sooner then later. Maybe this nurse is new and not following protocol?  She's probably not allowed to share results but she can tell the doc to call you because you are worried and it will be difficult not to worry for a week. Maybe your appointment can be moved up if nothing else. How can they expect you not to worry?

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by Sonrissa, Oct 22, 2014
Hey Shannon, try not to worry at this point. I know it's hard to do. This healthcare stuff and doctors are doing all kinds of different things these days, and there is probably a very simple explanation for them wanting to see you.  Focus on your normal routine and your family. I truly believe that if there was something serious, they would get you in immediately. Of course you will be in my thoughts and prayers. Stay positive, honey!!

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by Sonrissa, Oct 22, 2014
Shannon, this is making me mad that they are holding you hostage over these results. Please call them back and tell them that you are anxious and frightened. Demand that they give you the results over the phone. Tell them that you can not wait until next Thursday. Honestly, if they won't give them to you, I would probably drive down there and show up at the office. This is BS! You should not have to wait and stress like this!  Take care, girl. Please keep us posted!

Hugs!

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by Shannon79, Oct 22, 2014
I'm really hoping that it's just a case of new protocol. The receptionist I was talking too isn't new, but maybe that's how she was trained. I'm going to try and stay positive and see if the neurosurgeon's office calls sooner. She's usually pretty good about calling back. But it's a CRAZY busy office.

Thank you ladies for your support. I will let you know as soon as I hear something.

Hugs rissa

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by Sonrissa, Oct 22, 2014
And another thing, if you do need to just show up at the office, take Preston with you, and feed him a bunch of sugar. Let him bounce off of their walls of the waiting room for an hour or so! LOL! Trying to cheer you up sweetie! But seriously, I could see me doing just that! :)

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by journey2motherhood, Oct 22, 2014
I'm sorry to hear about this and I hope that you are able to remain calm until your appointment.  I know its hard and sounds ridiculous for me to say not to worry so I will not say that.  But I will say if you really can't wait, see if they can fit you in sooner.  Tell them its causing great stress and you need to do this sooner.  Maybe they will fit you in.  I will of course always keep  you in my prayers.  xoxo

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by Shannon79, Oct 22, 2014
Lol rissa thanks for the laugh. It's definitely a consideration! :-D

Thanks Joanne. I'm really hoping the neurosurgeon's office calls first. But I'm gonna talk to my husband tonight and see if he can take a day off to be with me. (Depending which day it is if I can get a sooner appt). If I get bad news, I really don't want to receive it alone. Your prayers are appreciated

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by Hollus, Oct 22, 2014
I always have prayers to spare!! Please keep us posted!!

Love and hugs~

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by jugglin, Oct 22, 2014
Hey Girl -
Thank u for sharing your story.  How very scary honey...and the fact that you have been keeping that to yourself must have been a huge weight on your shoulders. I truly have to believe if it were something bad they would not wait so long. $hit, I called with a lump in my boob and they wanted to see me the next day.  Maybe they just want to discuss how to manage things...like a set plan of when they want to see you, maybe some meds to shrink the tumor...not that it is cancerous.  However, the waiting game is AWFUL.  I would hope that somebody would tell you over the phone what the appt is about....I would call and tell them you are very concerned and would like for somebody to please give you more info.
Just know that we are all praying for you girl.  Praying for good health, peace, comfort and strength!
Please keep us posted and know you can talk to us, vent, or cry any time you need to. K?
xoxoxo
Gina

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by meegWpaw, Oct 22, 2014
Shannon I know I don't know you that well but I will pray for you too.  I hope you can stay positive.  I know it is hard.  I agree with Rissa, they just do so many things different it's like a procedure or protocol changes, they done it that way a million times, and they are not new but they don't want to, or cant, or don't have the time to explain why it's changed.  be good be well.  thinking of you!


Meegy

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by melimeli, Oct 22, 2014
praying for you.  But it is better you know of any change now so it can be addressed although ignorance is bliss is could also be deadly.  don't break down, you can do this.  Be strong and the power of prayer is strong also.  I am praying for you right now.  My daughter went though the same thing and it ended up being ok, it broke my heart to wait though.  

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by stacey10, Oct 22, 2014
I've just come across this and can't imagine how worried you must be!! I'm trying to think if there was some really bad change they would get you in straight away? Let's hope that's a positive! Um, not sure if your into alternative therapies, but here in Aussie there has been huge debate about medicinal cannabis oil and making it legal, there have been numerous studies and positive results on how it can cure cancer and shrink brain tumours, the ingredient in it that makes you stoned is completely removed from the oil, it's getting fantastic results, maybe something to investigate if your interested, you can google use cannabis oil for brain tumours and it will give you some amazing info xx

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by Des_a_rae, Oct 22, 2014
Sending thoughts and prayers from Alabama!!  I can't imagine the worry you're going through.  Hoping and praying it's nothing, no change and nothing to worry about.  Praying it's just been 4 years and they want a regular "update" kinda thing.  Either way..we're here for you!! and sending you strength and prayers.  

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by AnnieBrooke, Oct 22, 2014
I don't see why you couldn't call the doctor's office and say they have given you major anxiety issues and ask for an appointment earlier.  Tell them you are crying all the time and can't sleep, and don't know how you are going to make it until the appointment.  What the hell, they don't deserve to know any different, they are being very callous.

Avatar universal
by Bunnymc24, Oct 23, 2014
My sister just went through this with my nephew.  He had tumors on the back of his neck, into his brain... and we were all thinking terrible thoughts when the doctor told my sister that he wanted her to bring my nephew into the office to discuss the results... we cried and waited... when the doctor got my sister in the office he told her that it was a tumor but it wasn't cancerous but they wanted to explain everything in person so that if there was any questions from anyone they could be handled then and there! On a positive note for you, if it was serious then you would think that they'd want to get you in as soon as possible, right? Is this the same doctor who did the first MRI when it was cancer? Maybe they want to explain to you the difference between the two MRIs and show you any little changes there are and to show you what it looked like when you did have cancer and what the difference is now. Good luck to you and prayers have definitely been said!!! Keep updated on how things end up being! I'd not have the patience to wait a week either, hound them to give you the results or just show up in person...afterall, its your body and I think you should be the one to decide when you are ready to know the results good or bad!!! HUGS!!

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by mhv, Oct 23, 2014
Sending prayers and positive thoughts!

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by Shannon79, Oct 23, 2014
Oh you ladies are so awesome! You're all a blessing to me.

Hollus - Thank you for your prayers. Hugs

G - I thought it might help to get it off my chest, and in a way it does. By I still have some anxiety about the whole issue. Thank you for always being there. I'm gonna call and see if I can get in sooner.

Meli - Right now the waiting game is the hardest part and it s*cks. I'm really trying to keep it together and be strong. Thank you for praying.

Stacey - Here in Canada medical marijuana is legal but I believe it depends which province you're in. I think it is legal here in Ontario. I have no problem with people using it for medicinal purposes cause I've seen stories where it has helped people. But it is still a pretty controversial issue.

Des - Thank you for your thoughts and prayers. I'm really hoping that's all it is.

Annie - That is very true. I'm gonna call and see if I can get in sooner. The receptionist gave me a date and time when she called yesterday. And me not thinking, I guess just assumed that was the only time available.

Bunny - I'm sorry your nephew had to go through that. That would be true in my case, except that this isn't new. They found the tumour 4 years ago. I have mri's done once a year to keep an eye on it. This is the first time my Dr has wanted to book an appt for the results. No the Dr that requested the MRI is 3 hours away. My family Dr here gets a copy of the results as well as the Dr who requested it. (He's my neurosurgeon). Thank you for your prayers. Hugs

Meegy - Thank you for your thoughts and prayers. I often read your journals, but never know how to respond. I can see why people think so highly of you around here.

Mhv - Thank you for your thoughts and prayers

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by AnnieBrooke, Oct 23, 2014
Honey, rattle the damn cage bars and demand some assistance.  They have to be stupid not to realize that this non-communicative approach is frightening.

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by clean_in_ks, Oct 23, 2014
Thank you, Shannon, for sharing with us.....we weren't designed to carry our burdens alone.

I will definitely keep you in my prayers....the waiting and the trusting is the hardest part of life.  Keep the faith and let us know if you hear from either your primary or your neurosurgeon's office, OK?

Sometimes, I just have to "act as if"......to get thru some of my most difficult times.  Keep believing~

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by Shannon79, Oct 23, 2014
Thank you Connie. I'm trying to keep a "whatever" attitude. So far it seems to be working out okay. But I don't know how much longer that will hold. Especially if I have to wait another week still. I will definitely post an update when I hear back. Thank you for your prayers.

Annie - Yeah they seem to be so nonchalant and uncaring. I'm gonna have to rattle the cage or something

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by KeeLolo, Oct 23, 2014
Shannon, you hve been on my mind today. Just know that you are definitely in my thoughts and prayers!!!! My heart goes out to you and your family!! I pray that God gives you the strength, understanding, and a Peace that surpasses all understanding, a calm spirit as you wait to get your results from you Dr's office. We all love you here and will do all we can to help keep u uplifted and in good spirits <3

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by Shannon79, Oct 23, 2014
Oh kee you're so good to me. Thank you for being you! Thank you for your thoughts and prayers

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by TinaR10, Oct 23, 2014
sending prayers your way

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by KTowne, Oct 23, 2014
Ohh Shannon! I know how scary this can be. Last January I had routine bloodwork like I always do, and usually she doesn't call unless there's a problem, she called and set up an appt. for a week and a half later to go over my blood results, so I panicked the ENTIRE time! It ended up being GOOD news. Praying that everything is okay!

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by MeYeah, Oct 23, 2014
Ughhh. I am so sorry you are going through this! I really hope it's good or not bad news! I am sending lots of healing vibes and prayers.

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by journey2motherhood, Oct 23, 2014
Shannon,

Where you able to see if you can come in earlier?  I hope so, I know waiting is the hard part.  

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by butterflybabies, Oct 23, 2014
So sorry you have to wait and stress! Will be praying for you!

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by Bubulous, Oct 24, 2014
I am sending prayer to you and hugs.

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by Shannon79, Oct 24, 2014
Tina - Thank you for your prayers.

K - I'm hoping that it's just because she has a newer nurse and that's how she does things. Thank you for your prayers.

Me - Thank you. I'm hoping so too. Thanks for your healing vibes and prayers.

Joanne - The waiting is killing me! Not yet. I left a voicemail for the nurse yesterday to call me. I'm hoping she calls back today or I hear from the neurosurgeon's office.

Lily - Thank you for your prayers.

Bub - Thank you for your prayers. Hugs

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by margypops, Oct 24, 2014
Hi Shanon I have just spotted this journal ,I can understand your concern I would also be anxious .Time indeed to demand the answers, pester her .,Maybe a visit to the office would be in order , I also hate that waiting for blood work to come back, one always thinks the worst ..Prayers and thought coming your way  

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by Shannon79, Oct 24, 2014
Yep that was the first thing I did was think of all the bad possible scenarios. I'm really trying hard not to do that. Thank you for your thoughts and prayers margy

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by meegWpaw, Oct 24, 2014
well, the first thing I thought of this morning when I woke up was " I wonder if Shannon knows anything today."  hoping and praying for peace, and healing honey.

Meegy xo

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by Shannon79, Oct 24, 2014
Awww thanks meegy. You're so sweet. No word yet. I hope today. I don't really wanna go through the weekend not knowing at least something

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by meegWpaw, Oct 24, 2014
Yes I can only imagine.  Pulling for you sweetheart.

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by Shannon79, Oct 24, 2014
I finally got an update!!!!

I just got a call from my neurosurgeon's office. The brain tumour is stable. Still benign. But the receptionist is sending a referral to a spine specialist because I have a herniated disk. Of either issue, this is the lesser of 2 evils at this point. So I'll take it. (That is unless of course it involves surgery).

Thank you all so much for your prayers. You are all awesome!

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by nonights, Oct 24, 2014
This is good to hear about the tumor but please take care of disc too.

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by Shannon79, Oct 24, 2014
Thank you nn. I was hoping for better news and that it was nothing, but now I know so I can get a plan of action in place. And I now have an answer for this pain.

My neurosurgeon's receptionist is sending the referral off today and she said she would call with an appt. Hopefully the wait isn't too long.

Avatar universal
by MyMelBgirl, Oct 24, 2014
I'm glad you got answers (finally!!!).  Hopefully you can have other treatments before signing up for surgery.

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by Moma_Cher, Oct 24, 2014
Hey Shannon! I just went through all the angst and relief within 5 minutes reading through this!!! Lol! I'm so glad that the tumor has no change!!! Hopefully you get some good planning ahead to desl with the back issues. Back pain is so awful,

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by meegWpaw, Oct 24, 2014
SHANNON BABY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

what I heard was "Benign"

and herniated disk


is this GREAT NEWS or what??????????????

I am sorry about the disk but baby ...

just think about what the other news coulda been



ooh boy Shannon I feel good!  (James Brown)

I feel real good about you!

let's celebrate, honey!


but I know the disk is a concern too.

love you,

Meegy

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by Shannon79, Oct 24, 2014
Yes Ellen it's nice to finally have some answers without having to wait another week. Surgery is the last thing I want, so I hope there are other options for this first.

Cher - lol it was a crazy few days for me. I went through every possible bad scenario in my head without thinking of positive outcomes. Yeah it's probably looking a little bad, but it could also be much worse. Back pain really does s*ck. Preston is too young to understand why some days I can't pick him up, so it's hard for him too.

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by Shannon79, Oct 24, 2014
Thank you meegy. Like I was just thinking and posted, it could always be worse. So I'll take this as a small victory.

And meegy, you're a great part of my team of cheerleaders. You're all amazing and wonderful. Love you too, girl

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by specialmom, Oct 24, 2014
I just wanted to say that I'm really glad that it is not anything to do with the tumor.  I agree that back issues aren't great but a change in that brain tumor would be much 'more' emotionally to deal with.  Hopefully the spin doctor will have good news and it all can be handled without too much impact on your life.  I have had to wait for results before and that is just a horrible thing.  You almost feel like time has stopped and you can't take a full deep breath until you know.  So, breath deeply and follow it with a sigh of relief!!  peace

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by meegWpaw, Oct 24, 2014
:)    I was getting a little insecure I have to admit.  it only takes minutes for me to feel worried ...  lol

<3

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by Shannon79, Oct 24, 2014
Exactly special! Having the tumour grow would've meant immediate surgery and about 2 weeks in the hospital. I'm not ready for that. At least this way with it being the back, there are things they will likely try first before surgery. And that's if surgery is even needed. I can definitely let out a sign of relief now.

Lol meegy doesn't take much for me to get worried either. I admit, I'm a bit of a worry wart :-/ <3

Avatar universal
by MyMelBgirl, Oct 24, 2014
There are many things you can try before resorting to surgery. I hope you can get relief soon!  I'm so glad it's something that can be fixed & really glad the tumor isn't acting up. Time to celebrate :)

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by Shannon79, Oct 24, 2014
It is a celebration indeed Ellen! I'm really thankful it wasn't the tumour. I can deal with this

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by jugglin, Oct 24, 2014
So happy to read your update girl!  Yes, time to celebrate!  Kitchen dance in your honor!

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by Shannon79, Oct 24, 2014
I'll let you do the kitchen dance for me G. I'm afraid I might end up on the floor

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by KTowne, Oct 24, 2014
Thank god!!!!!!! So happy for you Shannon!! Hope the herniated disc isn't too much of a pain!

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by clean_in_ks, Oct 24, 2014
This is splendid news, Shannon!!!

As long as they keep "an eye" on the tumor and it isn't changing or growing and benign.....GOOD DEAL!!!

The disc, while herniated, if it isn't pressing on your nerves...maybe you can find alternative ways to help that.  When I was your age, I had two discs like that but I was able to ice (consistently), rest and take ibuprofen....and my pain and movement limitations and discs always got better.  There are many things you can try before surgery.....let us know if you need more suggestions.  Just be careful about narcotic pain meds.....ok?

Let us know how you're doing......I'm so happy for you....you know "they" say, most of what we worry about never happens anyway.......I love that~
Have a grand weekend~

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by Shannon79, Oct 24, 2014
K - Thanks. It's bearable, so that's good. But then there are good days and bad days.

Connie - They've kept an eye on the tumour since day one. The neurosurgeon has been so amazing. He put me through the ringer with tests when it was first discovered, but he was being thorough. It's a more rare kind of tumour. Only makes up about 10% of all brain tumours. I definitely don't want to start narcotics. I've seen how difficult it can be to get off them and the dependency scares me.

I will keep you posted on how I'm doing. You have a great weekend too!

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by Des_a_rae, Oct 24, 2014
Yayyy Shannon!!  Soo thankful everything with the tumor is still the same..no change is a good thing.  So sorry to hear about the herniated disc.  My husband had one and he had surgery because it was pressing on the main nerve (sciatic?) going down into his hip, leg and toes.  He lost feeling in his last 2 toes because of it and surgery was really the best option he had.  Thankful he did because he's doing SO good now.  Not saying or suggesting but that was our issue.  Anyways, praying something simple can be done to give you some relief.  :D

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by Shannon79, Oct 24, 2014
Thank you des!

I hope there's a simple solution too. But you mentioning the symptoms of your husband's makes me wonder about my leg.

Since I was 14 weeks pregnant I had a numb feeling running down the outside of my left leg. The Dr told me it was just pregnancy and that it would go away soon after. It's not as bad as when I was pregnant, but it is definitely still there

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by Des_a_rae, Oct 24, 2014
You're so welcome!!

Could be..  his started out as a mild pain but over time it got worse.  The doctor said it would and it would run down the outside of his thigh and it would cross across his shin down into his foot.  The doctor said that was where the main nerve ran and it all made sense.  He said he could risk permanent nerve damage and we didn't want that.  He had hurt for long enough and surgery was what was best for him.  I'm so glad you're getting it checked out.  Please keep me posted!!  and also if you have any questions please feel free to ask.  We are SO thankful for such a wonderful neurosurgeon.  He is amazing.  :)   Hope yours is also!!  

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by Shannon79, Oct 25, 2014
Thanks des

My neurosurgeon is amazing! From the moment we discovered I had a brain tumour, he was right on it. He put me through a lot of tests. He wanted to rule out cancer etc...I didn't realize as a neurosurgeon that he would deal with my back too.

It was completely by accident that this was discovered. He wanted to do a spinal MRI just to see if there was anything else going on. Good thing he did!

I'm kinda thinking the issue is related to my back. Last night in bed, my whole left leg went numb. The feeling you get after your foot falls asleep before the pins and needles start.

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by Des_a_rae, Oct 25, 2014
You're so welcome and so glad to hear you have a wonderful neurosurgeon.  It could be because of your back.  It was probably worse during pregnancy because of the obvious and now not so bad, but not going away either.  Please let me know what all they say!  When Brian's was making his toes numb, he also had really bad shooting pains over the top of his shin (main nerve).  His dr. said he'd get immediate relief from surgery and he did thank god.  It was wonderful.  The only thing he dealt with after surgery was of course surgery pain.  It's your back!!  So I was having to help get him up and down at home. I would've done it a thousand more times if I had to.  Lord I'm rambling on LOL...  Anyways, always thinking of you and wishing you the best!!  :)  

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by journey2motherhood, Oct 26, 2014
Excellent news Shannon! What a relief - of course there's the issue with your back, and I hope no surgery is needed.  xoxo

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by Shannon79, Oct 27, 2014
Lol des no worries for rambling. It helps me with things and gives me answers.

Thanks Joanne. It was a bigger relief knowing it was the back vs the brain tumour. I definitely hope surgery isn't required

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by spider6, Oct 27, 2014
Awesome news chickie....you know what I mean.  FYI, my cousin was diagnosed w/brain tumour in her late teens.  She just turned 58 and still kickin it ...and the beast sleeps.  ...as for the other; you'll just take it one breath, one day, one prayer at a time.  You are charmed Shanny, you'll walk through this stronger and better for the wear.  xo

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by Shannon79, Oct 27, 2014
Thanks Spidey.

What doesn't kill us makes us stronger, right?!?!

Avatar universal
by essdipity, Oct 27, 2014
As an MS patient I have to do loads of MRIs and often other tests as well. I found out many years back that I am entitled to the reports as soon as they are done. For me, it's easiest to go to the MRI center with picture ID and just pick up a copy of the report. I also get the actual CD. They have to give it to me by law (USA), not that anyone has ever argued about it with me.

There can be a downside with this, of course. The language radiologists and other doctors use can be misleading to layperson, and sometimes a little scary, even when what they're saying, basically, is that this issue is stable. Doctorese can be baffling :-)  But if you bear that in mind and resolve not to get psyched no matter what the report says, no need to wait for an appointment to get test results.

Some docs who order the tests would rather you wait till he sees you in person, mainly, I think, to be available to explain, calm fears, etc. And some patients really need that. But still, you are entitled to your own medical info.




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by heather727, Mar 09, 2015
So I saw your recent journal entry and I was like WHAT?! she has a brain tumor? How did I miss this? So I stalked your page and found this. I was still on maternity leave with Xavier so I wasn't on as often and I didn't go back through everyone's page once I was back to work.

I'm so sorry that you're going through this. I hope you're able to get some answers at your next appointment and that it isn't anything serious. You're in my thoughts and prayers!!

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by Shannon79, Mar 09, 2015
Thanks heather ☺

I hope it's not too serious either.

Avatar universal
by 10356, Mar 09, 2015
Prayers going up Shannon ! I also hope it is that she just wants to discuss these with you after phone calls for so long. At least this is my hope. I'm also sorry that you are having to deal with this.. lesa

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by Shannon79, Mar 09, 2015
Thanks lesa ☺

I think at this point I'm hoping for some non medicated pain management techniques. I really don't want medication if it's not absolutely necessary. I have a fear of becoming addicted and I also have a 2.5 year old that I'm home with all day. And I dread the thought of surgery. I've gone through enough of those

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