Getting Really Scared Here

[davincidanes]

I don't know what to do and it's hard to find information or support...  Or maybe I just need to tell somebody. I really appreciate the support I've gotten in this group, and I just don't know where to turn right now...  I will call my neuro in the morning.  Okay - you all know it's not MS.  It's a cervical spinal cord tumor.  It was just diagnosed 10 days ago, and my next appointment is with a Neuro-Oncologist on May 5th.

Here's the deal.  Every day I get up with a new or worsening symptom.  My legs get stiffer and weaker every day as well. Over the past week, I've noticed it harder to "see" the computer..vision is blurry.  Last week, too, I started feeling intermittent stabbing pains to the left back of my skull.  Not all the time.... it comes and goes.

This morning, when doing my normal stretching exercises, I felt a sharp pain on the left side of my neck... under where the stabbing skull pain is, when stretching my neck back.  I thought "What the hell is that?"  I felt up there and the tissue seemed soft and swollen.  I looked in the mirror and sure as heck it's ALL swollen up from the neck to the collarbone.  It has hurt continually as the day has gone on, and now it's a constant burning pain and tightness there.  I tried to think if there was anything that I may have done yesterday to pull a muscle or tendon, and no.... I don't move that much!

I really am scared that I have broken something loose....  :(

I don't know how often or for how long that I'll be able to check in here, my friends.  If any of you use Facebook, please send me a friend request there.  From that bit of social media nonsense, I keep in touch with family and friends.  Seach Linda DeVincent-Easley.  Thanks!  

[bbassel]

Thank goodness cancer is off the table and that is where it can stay!

As everyone has said please keep us posted. You deserve answers and I hope you receive some soon.

Keep the faith xo

Barb

[essdipity]

Hi, Linda. I hope the grand rounds thing brings you some conclusive direction. If it doesn't, many highly-respected hospitals offer what amounts to 'remote services.' That is, they receive all your test results, actual MRIs, physicians' reports, etc., then give their own opinions. Hopkins for one does this, and Mayo too, I believe, all for a goodly fee, of course. And others.

You want the absolute best minds in this situation, I know. I'm hoping you get some good info soon, so you know what course to take.

Sending loads of well-wishes,

ess

[davincidanes]

Thanks so much everybody!  After my symptoms being "glazed over" so long by my past doctors, it was really great be respected and taken so seriously.

Thanks to all for the well wishes, and please keep those prayers coming!

Love to all.

~Linda  

[4happygnomes]

That is great news that it isn't cancer!!  So glad that the appointment went well and that you received the time and attention you deserve!   Sounds like you are in great hands with this doctor and hopefully, the collective brains that meet on Monday can come up with a diagnosis and a treatment plan to help you live your best life!!   So very hopeful for you!!  

Keeping you in my prayers!

Karen

[Corriel]

Oh, Linda I truly hope that cancer is off the table. It is incredible how much this particular specialist is going above and beyond.

Please keep us posted and I hope that the collective of great minds on Monday will shed some insight.

I am glad that you have the dog training to keep your mind occupied until then.

Hugs to you,

Corrie

[immisceo]

First off, I'm so happy it seems cancer is off the table. I'm also delighted that you were given the time and attention you deserve at this appointment. I realise you were given far from rosy news otherwise, but as you said, having your case be a part of grand rounds could bring up valid alternate assessments or at least another potential course of action.

Please let us know what you learn on Monday, and never stay a stranger! Your journey really highlights how complex the interplay between symptoms, diagnostic test results, and medical opinion can be in this maze of neurological limbo land. I for one truly admire your resolve.

[davincidanes]

Hello all. Thought I'd drop in and give you an update.  I had my appointment with the Neuro-Oncologist at Vanderbilt today.

Anyway, the doctor there is one of the top neuro-oncology specialists in the country. (USA)  He is an amazing man with really nice "bedside manners" and made us feel very welcome.  He thoroughly reviewed all of the MRI's -  2 years worth, gave me a full exam,  and this is his professional opinion - He's not sure!  Oh, hell!  LOL  

This is what he said... There are definutely lesions on my cervical spinal that are causing all of these problems, but he does not think that it is a tumor.  He is sure that it is  NOT cancer.  That is a good thing.

If it is a benign tumor, it is not consistent with any type that he is familiar with.  He is more of the opinion that it is scar tissue accumulated since my car accident in 1995 and surgery due to that in 1997.  The bad news about that is, if so, it is inoperable, and there's no way that I'll ever improve ... most likely I will decline neurologically.

The goal of treatment will be to pharmacologicaly  manage my symptoms the best that they can.  He said that, if this is the case, there is no amount of physical therapy or exercise that would give me any  improvement, although I am personally committed to continuing to walk to keep my legs as strong as possible.
  
So, because he is so unsure, and really wanting to help me, he is not done. He asked for permission to bring my case in front of the entire neurological team at Vanderbilt during their weekly conference on Monday.  He wants to brainstorm with his peers and really try to figure me out, and determine the best course for treatment.

So, there it is in a nutshell. The promised that he will call me himself on Monday and let me know what the opinion is from their conference.  
So, I am in very good  hands, and at least know that I do not have cancer.  Must look at the positive side of this!

However, I do feel like a patient on the TV show, "HOUSE", in the scenes where they get together in a conference room to discuss mystery illnesses and patients.  LOL!  See how special I am?  

Once I can get some answers, I'm hoping to participate more in the group.  If the scar tissue theory is correct, my condition may be likened to Progressive MS, where damage continues to be done, with little chance of improvement.  

As I try to patiently wait until Monday, I will continue to focus on training my Service Dog, and pray for the best.  And I'm ever so grateful for all of the supportive friends that I have found here.

Hugs,
~Linda

[4happygnomes]

Oh Linda, I hope you have now been seen by someone and that you have answers and are feeling better!  I'm going to "friend" you on facebook, you have so many that care for you!!

Hugs!!

Karen

[HVAC]

I know you are scared. I wish I knew what is going on with you/ I have no clue. I care.

Alex

[Artanis12]

Linda,

I know I haven't been here terribly long or post as much as I should for as much as I read, but I've been following you, and want you to know that I'm thinking of you.  What you're describing is very scary and I hope you get into the doc sooner rather than later. I would go to the ER and see if you can get them spun up enough to get you in to the neuro-oncologist sooner that way.

Do keep us posted!

Karen

[karryon55]

I can only imagine how worried you are right now and you must get in touch with your Neuro or go to the ER because it sounds concerning.

I can only echo what the others have said previously in that you are part of this community and no need to feel you have to leave. I hope you can get some answers and relief soon.

Hugs,

Karry.

[Corriel]

Oh Linda, how truly awful that must feel. Please contact your neuro first thing, maybe they can get you into the neuro-oncolgist sooner.

I totally agree with what others have said no need to go anwhere. MS or not you're one of us.:)

Gentle hugs and please keep us posted,

Corrie

[essdipity]

Linda, call anyone who likely could help. I'm still not quite convinced it's not MS, but any way you look at it you're in pain and in need of help. Maybe meds such as gabapentin could ease what you're going through. I know it might make you feel dizzy and down for the count, so simply don't drive and don't do anything else complicated if you're on a med like that.

For me, I take 1200 mg every evening and have no side effects whatever. I tend to go on and off gab fairly often, because I fear the dryness in eyes, nose and mouth I experience may be worsened by this. I always taper up or down because I know I should, yet I do it fast, since I've never had any bad results that way. But in general it takes huge doses of any or all meds for me to get the desired result.

For you this may be different, but within reasonable limits it won't hurt to experiment a bit, always bearing in mind that it's only for a week or two more, while things are being decided. Remembering there's an endpoint has always helped me, and I hope it helps you.

Thinking of you--

ess

[davincidanes]

Thanks so much!  If this is still swollen and hurting in the a.m., I plan to call my local neuro.  Thanks for the love!

[bbassel]

I really hope you feel better soon. I am sorry that I don't have anything to add. I wanted to support you and say I would miss you as well ;)

Take care and feel better,

Barb

[supermum_ms]

Hey babe,

There would be many of us, who would still like to continue to support you, I know i'm personally one of them (!) but you don't have to go anywhere else.........

I honestly don't know what could of happened or if you have done something serious, but if you are in pain and strongly believe you've done something to your spine, I do think you should seriously consider going to the ER!

HUGS!!!!!!!