Reeve Foundation Paralysis Community

Hello Dr. Gottlieb,

I am about to have my forth spinal surgery in almost 8 years. First, it was my L-4 that exploded and severed my sciatic nerve, then another a year and half later. 2007 I had a Bi-lateral fusion at the L-4 and L-5, and now it is the S-1 that will be fuse together with the previous one.

For years, I have been in constant chronic pain and the numbness and tingle of my left leg and foot and nothing works. I am frustrated, and scared that I will never be "normal", that I will never walk properly again and I don't know what to do. It seem that every other year or two years something happens and I don't know why. I do not do anything to cause the disc to go out and they keep going downward.

Can you please help me to understand why this is happening and what I can do to stop this. I am a patient at the Spinal Institute at Cedars Sinai in Los Angeles, California. My doctor is brilliant, by I feel trapped inside this broken body. Most of the time I feel myself as a old person who can barely move.

I have been a big fan of Mr Reeve's since I was 11 years old when I first saw him as "Superman", and he is what got me through my first surgery, I am trying to focus on his words of strength, compassion and hope, but I sometimes it is very difficult. I see him as my light to not give up, but with so much happening to my spine, I feel I am losing it.

Please help me if you can,

Sincerely,
Sherrell S. Frederick

Hi Sherrell, welcome to the forum.

A friend of mine with a spinal cord injury refers to it as "the new normal." The problem is that even if you do change your philosophy about what's normal and what's not, your brain still expects everything to be like it was yesterday. So when that doesn't happen, you get angry and scared.

Of course it is the doctor's job to understand why this is happening, but often they cannot answer that question. When you asked what you can do to stop this, I had a funny reaction. I couldn't tell whether you wanted to stop the apparent deterioration in your spine, or if you wanted to stop this great fear of your body.

Of course you want both, but I can only talk about the emotions of someone living inside a body that no longer works well and has become a source of pain and fear. I became a quadriplegic 30 years ago and for several years after that I said my body acted like a terrorist and I had to treat it like a fragile lover. But like many committed relationships, my relationship with my body improved with age.

Sherrill, your body is broken, but so is your heart. And that's where all of the emotional pain is. We all ask ourselves those questions about what happened to us, what will become of us. And over time, we stopped asking the question but we have an answer anyway.

I know the agony you are living with. Not only have I been there, even after 30 years, every now and then I flash on it and my heart beats a little more rapidly. I don't have any answers for you. That will take away your fear. Certainly reassurance sometimes helps, but often not. For most of us, what we need is to be near people who care enough about us that they can just be with us and listen and even have the courage to try to comprehend what your experience is like.

In that way, you will find a sense of comfort and safety, even if it only lasts for a little while. And if you can get comfort, your broken heart will begin the long and sometimes painful process of healing.

And you might find some of that comfort in this community. Please keep in touch. Please

Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Thank you. I felt I was the only one who felt who felt this way. What as became the "new normal" for me, has been very difficult. I have never had anyone to talk to about this. I have lived my life as if it was the "old normal", and now I know what I am dealing in now normal. Most of the time, I am alone even though I have a husband and two adult kids living with me.
I believe you are correct. I do have a severe broken heart. I feel as I have lost everything, but I don't know how to change and reassess my life or even outlook of life and to work on the 'new' me.
Are there support group, possible in my city and or on-line. I know I need to talk to people who are going through the same as me. I need to learn whatever I can in order for me to get better.

Thank you for your help,
Sherrell

Hi Sherrell,

I am sending you the link to our fact sheet on support groups that you requested.

The link is:

http://www.christopherreeve.org/atf/cf/%7B3d83418f-b967-4c18-8ada-adc2e5355071%7D/Support%20Groups%206-09.PDF

We also have a fact sheet on chat rooms:
http://www.christopherreeve.org/atf/cf/%7B3d83418f-b967-4c18-8ada-adc2e5355071%7D/SCI%20Chat%20Rooms.Listservs%206-09.PDF

I hope this is helpful to you.

If you have questions or need additional information, please call me or any information specialist at (800) 539-7309. My extension is 7202.

Take care.

Sincerely,
Donna

Sherell,
I am re-sending so that the hyper links work.


I am sending you the link to our fact sheet on support groups that you requested.

The link is:


http://www.christopherreeve.org/atf/cf/%7B3d83418f-b967-4c18-8ada-adc2e5355071%7D/SCI%20Chat%20Rooms.Listservs%206-09.PDF

We also have a fact sheet on chat rooms:
http://www.christopherreeve.org/atf/cf/%7B3d83418f-b967-4c18-8ada-adc2e5355071%7D/SCI%20Chat%20Rooms.Listservs%206-09.PDF


I hope this is helpful to you.

If you have questions or need additional information, please call me or any information specialist at (800) 539-7309. My extension is 7202.

Take care.

Sincerely,
Donna

Dear Sherrell,

In my new book "wisdom of Sam" there is a chapter about grief. And in this chapter I tell this story of how I felt disconnected from the whole world in the days and weeks after my accident. And then I was transferred to the rehab hospital where I spent the next six months. After a while, that place became home. I had my daily routines and the place felt safe. And I had a sense in my head of this "inside world" at the hospital and "the real world". The day I left the hospital in August of 1980, I was overcome with grief and terror. And when I got home, it was worse. There I was in my own family with the people closest to me in the world and I felt like I no longer fit. All I wanted to do is go to sleep and never wake up.
But I did. Not because I am a hero or strong, I did that because that's what we do. Take a look outside and see how nature gives birth to itself every year despite a terribly grueling winter. Everything alive pursues life. And that includes people like you and me and everyone reading this entry.

The last sentence in your most recent entry meant the world to me.
For the first half of my career I specialized in treating substance abusers, and I could often tell the prognosis in our first meeting. Towards the end of our meeting, I would typically propose a treatment plan. And those who "that's fine, I will do whatever I need to do to get better", it could predict they would probably get sober -- I couldn't predict when and how or whether the road would be linear, but most of those did get better. Those who try to negotiate with me and said that what I was proposing was inconvenient or they wanted to think about it -- well you can imagine the rest of that story.
And now when I treat couples -- same answer. The couples who do best in therapy are the ones who are so devoted to the relationship that they have decided they are going to be more stubborn than their problems and some way or the other, they will get through this. And they usually do.
So that is why I was so happy to see your last sentence!

I am so happy to see you are getting some concrete answers and recommendations from Donna. Please keep us posted!

Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Sherrell,
I am so sorry to hear about the frightening changes that are happening to you. I am glad that you have joined this online community. I wish I had discovered how helpful it would be sooner. While none of us can know exactly what your experience is like, this is a sharing place where I have found so many reassurances that what I am going through is similar to someone else's struggle.

Welcome to the community. My computer has been in the repair shop since 3/15 and I have missed the forum participants. I found a lot of great support from reading old and new posts when I first joined. There is a wealth of information available in this entire site.

I hope for the best for you as you undergo yet another surgery. Please let us know how you are doing.

Dear Sherrell-

You may benefit from the (worldwide) scan review program at NeuroTexas Institute.  For $50, you may find some peace of mind if everything possible is being done for you ....or better yet, maybe find a treatment alternative or new idea!

"The Scan Review Program at NeuroTexas Institute is a service to physicians and patients seeking a second opinion.

Our physicians are committed to providing a clinical report in a timely manner, within a week of initial request from the primary care physician or from the patient. This consultative approach allows you to benefit from additional resources and possible alternative options for treatment."
http://www.neurotexasinstitute.com/resources/patient-resources/scan-review-program.aspx

Wishing you all the best-

Julie