It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Spinal Cord Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-19-2008, 08:28 AM   #1
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need support

Hello everyone,

I will be having an appointment with my neurologist on Friday.

We will be discussing what the diskogram showed and what my options are.

In the past we have talked about the possibility of Fusion or of an ADR (artificial disc replacement)

You guys, I am really scared! I have been through so much in the last few years and the thought of more surgery, especially on my neck, is frightening to me.

One of the biggest things I am afraid of is the doctor wanting to do a Fushion on my neck. They have not approved the ADR for multiple levels in the US that I know of.

I would rather have the ADR at multiple levels because if it does not work out they can fuse later. If he does a fusion now there is no going back after that.

I know that all these thoughts are like "FUTURE TRIPPING" but I am only human and I can't help but feel this way.

Lately I have been very tearful and sad. I feel as if I am going around with a smile on my face when inside I am torn up. I feel trapped and held back form the rest of my life. I still hold hope of going to the nursing program, but I am really sad when I hear of all my friends who I have been in school with for 3 years, going on to the next thing. Some have been accepted into the nursing program and some are now working as CNA's or Lab Techs.

Meanwhile I feel totally stagnant.

In a perfect world if I had to have surgery I would love to get it done next week and then recover with 30% or more of my pain decreased. But we know the risks of surgeries and then on top of that multiple spinal surgeries.

I am scared of the direction of my life, or the lack there of!

I spend the highest prices a person could pay on prescription meds and I am drowning in the cost of trying to manage my pain.

I just want to move forward and it does not seem like its happening. Every week I feel like I am getting worse. Today I could barley roll over in my bed to get up this morning.

Very scared and very sad. I know you all will post and it will give me the much needed little boost of hope that I feel I need at the moment.

I do have FAITH that some greater good will come from all the suffering and pain I have endured, I am just uncertain of when, and that is the hardest part.

Thanks for all of you. You guys really are some of the best and kindest supportive people I know.

Lately I have been receiving some s*** from others in my life who do not understand the severity of my neck problems and the pain that it causes. I get frustrated and sad about it.

Okay I better stop because its making me cry.

Thanks for reading,
Chrissy

 
Sponsors Lightbulb
   
Old 05-19-2008, 08:50 AM   #2
Inactive
(male)
 
Join Date: Dec 2006
Location: CA
Posts: 1,569
forginon HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy,

How I wish I could just give you a big hug and you could just get all the tears out.

I can't feel your pain, but I can hear it, and it sounds awful. No one can avoid "future tripping." At least I can't. I'm doing the same thing with my Friday appointment coming so fast.

I don't know about your state, but in CA a CP patient, or any patient in pain, is not required to undergo any procedures to remain in PM care and use PM meds. One has the right to say no to surgery and continue treatment as is. Not that you want your situation to remain unchanged, but do you have this right? If you are unsure, but would like to know, look up your state's pain policies. They shouldn't be too hard to find. In CA we have what's referred to as the Pain Patient's Bill of Rights, where all this is spelled out.

I feel especially tender towards those with back, neck and spine pain. I have only experienced brief episodes of such pain and I just don't know how I'd handle it if it were my problem. You all suffer so much. And it is so all-encompasing.

I once dove off of a boulder at a nice lake near Lake Tahoe, only to find that the water was much more shallow than I thought. I immediately hit my chin and chest on the bottom. For many hours I was unable to move from the abdomen upwards. Not much pain, but totally paralyzed. This eventually passed, but now, whenever my back does hurt, it's always in the center of my back a few inches below my shoulder blades. I just hate it when it goes out, but it's only a few days and I'm sure nowhere near the level of pain you suffer.

Now you, Diet and I all have critical appointments on Friday. Let's keep each other in prayer and post soon thereafter to share what actually happened. OK?

steve

 
Old 05-19-2008, 09:03 AM   #3
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Hey Steve,

Thanks for the encouragemnet. That must have been so scarry to be partially paralyzed. I could not even imagine.

As far as I know I do have the right to refuse any surgeries or treatments. I have never had any issues with any of that.

I just called the prescrition company to see why I pay $230.00 for 160 generit 10/325 percocet. They say the normal cost is $320.00 and that I am getting a discount. How awful is that. Thats only one of my meds.

I swear I about cried on the phone but refrained from doing so.

In a little while I am going to call my attorney and see where we are on the case and ask him a few questions. I know he was waiting for a written explanation from my Neuro as to the future care for my neck since I had the discogram done. I will see the neuro on Friday.

Today is one of those days when I just feell like being alone. I just have a hard time looking at others on a tearful day becaues I fell like they can see I am unhappy all over my face.

Sreve, if you read again...what is your doc appt. for? Refresh my memory?

Pepper you too if you read this.

I will be praying for us all.

Chrissy

 
Old 05-19-2008, 09:44 AM   #4
Facilitator
(female)
 
Moldova's Avatar
 
Join Date: Dec 2006
Location: N.J.
Posts: 3,642
Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy,
I can understand how scare you are; this is a very normal respond to unknown...
I know that surgery is not a walk in a park; the only thing I would like you to do is to have positive outlook. Don't be afraid just because you read so many negative posts here. Just remember that people who have sucsessful stories to tell us - they are not here. They out and about while ago and don't have to come here looking for advices or sharing their "painfull" story like some of us do.
Make sure your Spinal Ortho has fellowship in Spinal surgery and has many years of experience doing spinal surgeries. If you leave low life quality due to pain and limitations, of course you try to fix situation and surgery is the option. Unfortunatelly for some of us takes longer to heal, more complications down the road, but this doesn't mean you will have problems too.
So don't get discouraged or scared just because of someone else's experience..
I wish you all the best..
Take good care
Moldova

 
Old 05-19-2008, 10:24 AM   #5
Senior Veteran
(female)
 
Join Date: Feb 2008
Location: NY
Posts: 1,884
cmpgirl HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy my darlin'....I am hugging you right now as I type this. I am so very sorry you are having this fear and pain and uncertainty. I wish I could take some of it away and carry it myself. What I can do is pray and send you good thoughts, and that is exactly what I am doing and will continue to do.

I can't advise you to have surgery or not, but I hope you can get the answers you need on Friday. If the answers are not satisfactory or you feel that the neuro is not giving you all of the options available, please see another neuro. We are all entitled to second or even third or more opinions. While too many differing opinions can also be even more confusing, it at least gives you options from which to choose.

As far as Nursing School goes, if it is meant to be, then it will be, in the time frame that it is meant to happen. If for some reason, this gets to a point where it is not an option, then there are many other things that you can pursue. You have so much to offer. You are bright and enthusiastic and so very compassionate. I know there is a plan in place for you. And I believe that plan will come to you.

Please know that I am here for you and will pray for peace and resolution for you. If there is anything else that I can do, please just let me know. Give yourself permission to be sad for today. When we fight it, it just comes back again. God knows you are in pain right now and I know in my heart He will send you comfort. He takes His time sometimes, but he always comes through in the long run.

God bless you and keep you in His loving arms, CMP/MM ((((((Chrissy))))))

 
Old 05-19-2008, 11:58 AM   #6
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Moldova, you are right! I forget there are many success stories. Your right when you say they are no longer posting because they are feeling well and no longer need direction and support. thanks for reminding me. So far I think my fear of more surgery is a healthy one, but I need to be careful not to let that fear get out of control...or maybe I should say...I have to be careful no to let the fear control me.

cmpgrl, I thank you so much for your support. It made me cry tears, but the were tears on knowing that someone is thinking of me and praying for me. Thank you cmpgrl and many others I know who are praying for me.

The suspence(sp) is killing me! I just want to hear what the Neuro has to say. I am just ready to hear it and deal with it. Move forward you know!

If I have a second opinion I will have it with the same ortho Srugeon who did a second opinion on me after the first surgery. He said the same thing as the neuro last time I saw him.

I am feeling pretty icky today and I have to go have my teeth cleaned tomorrow and then after that on to an appoinment with a periodontist(sp) to see what needs to be done about my teeth that have severe bone loss.

It is never ending. I just feel a huge weight on me and it is a job in-an-of-itself just to not be totally consumed by everthing. I just can't go there. I will keep on talking about it untill I can talk about it no more rather then let it consume me. That takes to much energy and I already waste enough of it as it is.

I need to take a rest for a while.
Thanks again...I really could not walk this road alone. I am grateful to have all of you to hold my hand and allow me to cry when I need to cry!

Chrissy
PS cmpgrl, thanks for the hug!!!!

 
Old 05-19-2008, 06:15 PM   #7
Senior Member
(female)
 
Join Date: Oct 2006
Posts: 287
kim46 HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy. wishing you a good visit on Friday and I've been folllowing your posts - I will look for your update and sending hugs.

 
Old 05-20-2008, 05:00 AM   #8
Senior Veteran
(female)
 
Join Date: Dec 2006
Location: western us
Posts: 7,268
ms_west HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy,

((((Gentle Hugs))) When I read your posts and many others on this board it amazes me how much I see me in your posts. I guess we all have similar thoughts, fears, worries and moments of sadness. I wish you only the best on Friday. It is a big day for at least 3 of us on the board - you, Steve, and I. You could say it is the turning point in our recovery. We have to remember it is natural to worry but what is is whatever it may be. We can't change our fate on Friday or in the near future. We need to get thru each day one day at a time and concentrate on that day before we worry about Friday or next week. Friday will soon enough be upon on us and you know what? We will get thru it and deal with whatever cards we are dealt. WE ARE STRONG individuals who have been thru h*ll and back and we will get thru it again with the love of our LORD, family, friends and Healthboards PM board.

I am here for you and am praying for not only the 3 of us but for each one of us on the board. There are a lot of people hurting and I just pray that we have a better day today.

 
Old 05-20-2008, 06:13 AM   #9
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Thanks Pepper and tara,

Yes there are so many who are hurting!! Thanks for so much love and support.

Just for today I am going to practice staying in th moment. I have some things to get done today.
At 1:00 pm I have to have my teeth cleaned and then I will be going to the periodontist at 2:10 pm.

Staying in the moment is hard some days. I try my best to do it but sometimes I struggle.

This morning I am having a bit of extra high pain levels. I will need to take an extra long hot shower I guess. I always seem to start the day in excruciating pain. I dont understand why that is. ANyone else have this going on.

Today I do feel a bit less anxious and nervous. I think that knowing I am not going through this alone, that I have all of you supporting me does take some of the nervousness away.

I am not sure what you guys are going to appointment for, but Steve and Pepper. Thanks for being here and I too will be praying for you both.

Chrissy

 
Old 05-20-2008, 07:13 AM   #10
Senior Veteran
(female)
 
Join Date: Dec 2006
Location: western us
Posts: 7,268
ms_west HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy, yes today I woke up despite taking my oxycontin at 4 in the morning with severe pain at 8:00. I ended up taking a breakthru before I could get out of bed. Not the best way to start the day. I am sorry you are going thru it too.

I am having my CT mylegram read and I might have to have spinal surgery #5. So prayers are definitely needed here.

I pray that today is a little easier for you and that things go well on Friday.

Last edited by ms_west; 05-20-2008 at 07:14 AM.

 
Old 05-20-2008, 12:01 PM   #11
Inactive
(male)
 
Join Date: Dec 2006
Location: CA
Posts: 1,569
forginon HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy,

My appointment Friday is with my endocrinologist. It's about getting the test results from yet even more blood and urine tests and he smokes out why some of my conditions are the way they are. He needs to know how much damage this brain tumor has done, and how to treat it. I hate to say it, but I hope we discuss taking it out. Not that I want that yet, but at least have it on the table. My worry is about cancer. The doc has hinted at the possibility in more than one appointment and I'm scared.

I also have an appointment with my GP, which I moved up from next Tuesday. We will be exploring adding a tablet to my MS Contin night time dose, per my PM doc. I wanted to have this appt sooner so that, if he agrees, I can start on the higher dose immediately and just maybe get some sleep.

You, Diet and I are all on the spot Friday. Let's hang in there together and pray for the best outcome for all of us.

steve

 
Old 05-20-2008, 04:49 PM   #12
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Hey there!

Steve I did not really know all that you had going on> You are an amazing man to be going through all of this. I will most certainly be saying some prayers for you as well as Pepper.

Yes your right we will all do it together.

Pepper, Honey...I am so sorry that you woke up that way this morning. Trust me I am right there with you. I will be praying for you too my dear. I am so happy to have you all by my side.

My appointment is at 2:30 pm. I don't know when you guys have your appointments, but I am sure that I will be totally on edge by the time the appt. time comes around. My neuro's office can sometimes run a little late when it is in the afternoon.

My Mom will be with me at my appointment. I will be with you two in spirit.

Today was kind of tough. I had alot of appoinmetns all back to back.

At least the attorney said that once the neurologist gives him a written report of what he estimates as the rest of my care present and long term, then he will begin to put it all together to present the case and try to get the maximum my insurance allowed. All the money in the world can not replace my neck.

I need to go lay down before I can make something to eat so I will check back in the morning. I hope that you both will be feeling better tomorrow.

:ange l:
God Bless

Chrissy

 
Old 05-22-2008, 02:27 AM   #13
Senior Veteran
(female)
 
Join Date: Jun 2004
Location: Northern California
Posts: 797
Fiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

Chrissy:

I hope you get answers you need on Friday. I know you've been through so much and in such pain. You need relief and you're right a neck definitely can't be replaced. And no money in the world can give a person back their health. I made the mistakes years ago of letting my LONG Term Disability Insurance carrier intimidate me and lost out on sufficient monthly income checks (that my family could really now use). Of course we still receive my monthly SSD checks, but the loss of the additional income (which in total represented 66% of my former pay check and I WAS the primary bread winner until I got sick).

So, I'm a BIG one on NEVER settling until you get what you deserve. I kick myself everyday for allowing myself to be intimidating and so many insurance companies operate in such a criminal fashion. I later found out that Long Term Disability insurance representatives have been paid HUGE bonuses for releasing clients. My father would have paid whatever it cost for proper legal representation, but at the time I was so sick (complications of my Lupus, I didn't feel like I could go through the legal headaches). I'm blessed to have wonderful parents who help us out tremendously when we need additional help with our mortgage and thankfully they are financially sound and of course my husband does have a wonderful job, but his salary will NEVER compare to what we lost when I had to give up my career.

Sorry, to get sidetracked on that, I just feel so strong that insurance companies can operate so horribly and I'm so happy you have a good attorney on your side.

Sounds like your Surgeon is talking to you about many of the same things mine is. Though the ADR he talked to be about would just be at the C4 level and they would just remove the instrumentation from my fusion (since I am now fused.)

I think about you often and looking forward to hear what you find out from your surgeon.

~ Fiona
__________________
080807-Cervical-Stim~071707-ACDF-C5-C7 w/instrumentation/bone graft~'07/06 Lumber instrum. removed 05/04-Fusion(DDD/Collapsed Disc L5-S1)08/99-Microdisectomy(Herniated Disc) ~Lupus/EDS,Migraine

 
Old 05-22-2008, 06:08 AM   #14
Inactive
(female)
 
Join Date: May 2007
Location: USA
Posts: 1,362
skych HB Userskych HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

FIONA!!!!

I hae not heard from you in so long!!! Nice to see you!!!
I am glad to hear you have finally fused. What is going on??!!


Tomorrow is the appointment and I am so anxious, but excited too. I have been talking to God and I feel I am ready to have surgery if that is what is suggested, but I do still have some anxiety about going through another surgery. My poor body has just been through so much in a small amount of time.

There has bee a temperature change here where I live. We just had a weeks of unseasonably warm temps in the high 80's and on into the 90's. Now we are back down into the 50 range for the days high.
My body is just on fire. I could barley get myself up and out of the bed.

My mom will be here this afternoon so I am happy to visit with her.

Thanks for the support.
chrissy

 
Old 05-22-2008, 05:26 PM   #15
Senior Veteran
(female)
 
Join Date: Jun 2004
Location: Northern California
Posts: 797
Fiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB UserFiona_Jo HB User
Re: Appt. with Neuro on Friday! Nervous and anxious, scared of more surgery,need sup

/\
Thanks Chrissy! Great talking to you! I haven't been on the computer very much, because I just get so frustrated with the constant pain and honestly sometimes it just hurts to be on the computer.

You will definitely be in my thoughts and I hope you get the answers that you need. You deserve relief from the constant pain you're in.

~ Fiona
__________________
080807-Cervical-Stim~071707-ACDF-C5-C7 w/instrumentation/bone graft~'07/06 Lumber instrum. removed 05/04-Fusion(DDD/Collapsed Disc L5-S1)08/99-Microdisectomy(Herniated Disc) ~Lupus/EDS,Migraine

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Furious after my neuro appt for pseudotumor gopackgo Brain & Nervous System Disorders 3 11-20-2008 08:15 AM
Dr. appt. today.. Sage48 Back Problems 8 03-05-2008 10:17 AM
Had neuro appt today....WARNING LONG lynxgal Multiple Sclerosis 2 02-22-2008 02:23 PM
Update - had neuro appt lynxgal Multiple Sclerosis 9 10-31-2007 01:40 PM
Neuro Appt NCLynn Multiple Sclerosis 1 09-04-2007 01:23 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



WebDozer (268), jennybyc (197), Realhousewife (42), kenzibenzi (33), NJ Ldy (32), SpineAZ (31), teteri66 (26), frenchfri1003 (21), ladybud (20), feelbad (18)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 05:59 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!