Sad, in secret.

[JanieDriver]

This is just my second post. The first in the newbies thread. Maybe it's a godsend that I found this site somehow.
I found out from my neurosurgeon yesterday that I need to have surgery on my back, L2,3,4 & 5, and have rods and screws put in. I have spinal stenosis, degenerative disc disease and spondylolysis and am rapidly going downhill.
5 years ago I had a very serious heart attack, "the widowmaker". 50% of my heart was destroyed and I have a defibrillator implanted now. I pretty much went through the "death" of the person I used to be with that. I found other ways to be alive and productive and find things that were better than my working days.
Anyway...my husband is being a cheerleader now. "Aren't you glad they're finally going to do something to fix your back?" he says. I say "It doesn't always work." He says to me "Just think, after some recovery time you'll be able to work in your garden without paying for it like you do now." I want to tell him to shut up. Instead I just say that it hasn't all sunk in yet.
I'm just sad, sad, sad, sad, sad, but I don't tell him that.
I havn't told anyone in my family. I havn't got the strength to react the way my kids or my friends need me to for their comfort, know what I mean?
So here you are, out there in space and time, reading this. And maybe you know how I am feeling. Everything is not "allright" now. Allright means having a good heart and a perfect back.

[joy]

Hello I am just going to call you sad for now because I KNOW how you feel I think. Please don't let them rush you into surgery. I think just maybe a second opinion? This doctor could be just surgery happy and it could make you worse. I know you know this though. I let my husband and dentist the first time talk me into something and the very last time, I hope, into having foot surgery. I knew deep down what I should be doing but hubby was so hopeful that what the foot doctor suggested would stop my troubles. And your back is a far far bigger project with a lot more room for error. Like I said, I know this is how you are feeling. Please keep up with the informing us. I know at times I get to the point that it feels useless to fight everything. I think, just give up and go with it, I'm doomed anyway. But you have to fight this and be your own advocate.

I might add that I may not have all your back troubles but I have plenty. I have scolosis, stenosis, degenerative skelatal problems, bone on bone for left hip and more filling out 2 pages of wrong things. And I doubt I'll ever have surgery as I have been told by a few specialists that it just would not do well for me as I have neuropathy. I have heard of more failed back surgeries than I have successful ones. BUT there are a few. Pick the information over, think very carefully and move slowly. I wish you well in whatever Janie.

added this: have you seen a pain specialist? I have had nerve blocks that helped a great deal. That and of course pain medicine but what I have to do most often is just sit or lay down when the pain gets to be too much. I am 61 and the future is bleak looking.

[moose53]

AWWW, ((((((Janie)))))),

I know how scared you are.

http://chocolate-moose.p5.org.uk/MINIS/huggiebears-mini.gif

I had my gall bladder out in 2000. I was hysterical -- couldn't stop crying. Didn't want the surgery. One of the doctors there said "should we cancel the surgery"?? I told him to stop being a jackass :p Finally, the nurse came up and asked me why I was crying and she hugged me and held my hand. Make sure that you tell the nurse how scared you are.

Now, the other part:

I have about two dozen blogs that I read fairly regularly. Some, I read every single day. Jen Gray (http://www.jengray.com) is one that I read every day. I believe that The Universe guides our steps to where we need to go next. This is definitely for you: http://www.jengray.com/archives/000825.html

Janie, a big part of the reason that I was so scared in the hospital was: no one knew where I was (I went in as an emergency). My son was in prison so he didn't know what was happening to me. I've been out of contact with my half-brother for a few years. I was scared to death to die and no one would know. I had no one there to support me.

All that was in 2000. Since then, I've had to retire. I was on unemployment for a year. I had no money at coming in for three months -- picked up soda cans to feed me and the herd (cats). Went on SSDI. Adjusted to not working. Lost one of my half-brother's to heart disease.

In other words, since then I've had a MAJOR attitude adjustment.

Janie, people like you and me, who think we're in charge of the world and think we have to protect everyone in our care from suffering any trouble or pain or heartache do others a great disservice when we don't allow them to help us.

You've got some real major stuff coming up. All I had to do was read your words on a computer screen and I knew what you were afraid of.

Honey, you don't have to protect everyone in the world.

You have to allow them to help you. This is what happens in families that love each other and care about each other. They take everything -- the good, the bad, the aggravating, the messy -- and they go through it TOGETHER.

This teaches the kids how to cope with their own lives as they grow up.

It allows the husband to do something other that sit in the waiting room at the hospital and feel the same fear in his gut that you're feeling.

He shouldn't have to go through that alone and neither should you, Janie.

You DON'T have to go through this alone. You're not in charge. From now on, you're going to be SHARING responsibility.

Sit down with your husband and your kids and talk about EVERYTHING that's going through your head and your heart. You may cry. They may cry. There's nothing wrong with that. It'll bring you all closer together.

When you allow people to help you, you bring the energy of The Universe into alignment. Love and caring and healing thoughts and prayers are SUPPOSED TO flow around and over everyone. That's the way it works.

Allow your family to help you. It will take MOST OF the terror away. Ask the nurse to help you. Introduce your husband to the nurse. It'll help him feel that someone's taking care of you in a place where he can't go. Allowing people to care about you will allow you to feel the support and love and healing thoughts that would flow if you do not block them anymore.

We here at Braintalk and also at NeuroTalk (http://tinyurl.com/2ftscx) have seen miracles happen. We've seen babies who should not have survived one more hospitalization come out after months-and-months. We've seen people survive horrible head injuries. We've seen people survive divorce and abuse and homelessness. BECAUSE we care about and love each other and we pray together and we support each other. You're going to become part of that ENERGY that supports us and heals and protects us. You signed up for that when you made your first post. (Didn't know that, didja' :p )

Bless you, Janie. Hang on tight to everyone that surrounds you. Talk. And BREATHE. And allow The Universe to guide you toward your miracle and your healing.

BIG HUGS.

Barb http://chocolate-moose.p5.org.uk/MINIS/holding-hands.gif

[JanieDriver]

I guess I'll clear up that I have had second and third opinions. In fact, the neurosurgeon I have would not operate last year, so I know he's not scalpel happy. But in the past year my bones have completely shut off my spinal cord. I am starting to lose the use of my legs. The only option with this is TLIF, or Transfominal Lumbar Interbody Fusion. This is a pretty good link with an explanation of the proceedure: http://www.gordonspineassociates.com/html/lutlif.html
I have been seeing a pain specialist for 2 years and am taking a large dosage of pain meds now, but they are starting to not give me the relief they should. Those docs are also for the surgery.
My support network is a little small right now. I have my husband and two good friends. I think that his children may pitch in, they live 6 hours away. The problem with my kids is they live in NY and Maine and I live in Arkansas! My youngest will be having a baby in October so can't travel, and the oldest is a teacher and will be working, plus has two kids in school. Hubba-hubba- hubby is slowly starting to realize the responsibility that will be his. He'll get his mind wrapped around it.
Moose, thank you for the link to the photograph and the poem. I did feel so sorry for Jen and how she is feeling though. I wish that I could tell her things that were waiting when I went into cardiac arrest. Poor Jen, if she could only have the ability to believe.
Joy, why is your future bleak? Why are you doomed?

[joy]

Because I have idiopathic peripheral neuropathy and no one WANTS to touch anything with my messy spine and hip toubles!! When I had a partially torn rotator cuff a specialist ssaid he would not do surgery because I would not heal. I too have been to doctors hoping that they would say, we will do surgery. But no, not so for me. And you already know what happens. I am dead up to mid calf because of something. I too think that spinal stenosis might be the cause but so far no one has suggested anything but pain management. And even he dismissed me last time because the procedure did not work. He wanted to do the same for the other side and all I said was the left side hurts so bad I can't stand up anyway. That was it. He was finished with me!! I am going to send you a pm. If you don't reply that is okay.

[JanieDriver]

September 4th is the surgery. They will put in 5 sets of screws and rods. I wonder what life will be like afterwards? Luckily I have had times of needing to use meditation to calm and heal and can fall back on that now, beforehand.

[Buttons2]

Janie I also share some of the same spinal problems but as long as I can walk I'm grateful. Surgery isn't an option for me because of my heart. I'm hoping you will be one of the lucky people that has success!

We'll be here for you!

About those plates & screws.....I have some in my right arm,the surgery was nearly 20 yrs ago. Great success overall & no problems,but the experience itself was horrific! Why? Cause the surgeon lied to me about the procedure & then he wasn't even around when I finally woke up,his associate was there & I'd never met the man in my life! I cannot stress enough to have your hubby there for the entire porcedure & recovery! My heart stopped & that should not have happened! (this was after discussing my concerns with the anathesiologist (sp),he IGNORED what had happened in the past).

I was told I might develop arthritis from the plates,well I did but I also have arthritis in other areas. When the weather is cold or damp the plates hurt too. I've known one person with back plates/screws he suffered in cold weather also.

I'm guessing your gardening days will need to be adjusted to raised planters only!

Prayers for you & best of luck on Sept 4th!
HUGS Buttons

[joy]

I will keep you in my thoughts and prayers Janie. A lady from church had surgery that sounds kinda like you explained yours. To my amazement, she is doing wonderful. I just have heard of a few failed surgeries and let my feeling bad taint my usual optistmistic judgement. I did not catch that there were several doctors in agreements in the first post so thought it was one doctor that loved to do surgery. I had one doctor tell me that there are others out there like that. It surprised me coming from another doctor, lol.

[JanieDriver]

You know, I think we all mostly hear about the ones that failed. They make better stories. I think maybe the media has trained us to listen to the bad stuff.
Hubby is even going to be there with my med list the day after. He'll be going to the nurses desk to see how it compares to what I have actually been given. I don't trust that part of it. I take about 25-30 pills a day, and if they come into my room twice with meds, one time with 3 pills and one time with 4, then something is wrong and we will be bringing in our own supply. I will do whatever I have to to not let the hospital care kill me.

[joy]

It is good to know that you will be well cared for. That would make me feel even better if I were to be in the same situation. Please keep us informed when you can. We like knowing how members are doing.

[Buttons2]

Janie, we are keeping up to date on you through joy(bless her heart). Sure hope the surgery was a success & the pain isn't too unbearable.

Hoping for better days ahead for you!

Gentle HUGS,Buttons