Please help

Hi to everyone here. I am glad I found this site as I have an upcoming surgery sometime this year. I have not spoken to a surgeon yet but will soon.

My question is, I have autonomic dysreflexia, which is a nervous system disorder due to spinal injuries (slipped disc in '97/cervical injury in '09). I am unable to control blood pressure and body temperature because my spinal nerves are damaged.

I am worried about going into surgery because I could go into neurogenic shock from general anesthesia given. It could cause cardiac arrest from my body not being able to control low blood pressure/high pressure/pulse rate and the temperature rate. Also, I have a bleeding problem from low platelet count but will be given a platelet transfusion.

I am just wondering if anyone else here has had the surgery with spinal cord injuries and had a successful surgery. I am so worried and don't know if I am doing the right thing to have the surgery. I just want to live and don't care right now if I do end up with a bag.

This has taken over my whole life, and I have gotten so depressed thinking about this all the time. I don't have family; both parents died at an early age, and I was unable to have kids, so I don't have support like I would like to have. It's a lonely dark road to lead with no one by your side in times like this.

This will be my first surgery, and I am 56, so I am scared.

Please, if anyone is out there who has had a spinal injury, let me know how your surgery was successful. I really need support now.

Hello Charmed, I noticed this is your first post, and I take this opportunity to say welcome aboard. Not sure if this will help but I've had two spinal operations, the first on a discoidectomy at the L4-5 level, and later a triple laminectomy at L 3-2-1 S1 area and after three months I had another slipped disc which I decided to live with rather than have another surgery. But the spinal operations did not interfere with the Ileostomy, although I had to go through three operations for that. The only advice I can offer is do a lot of research on the surgeon, one would not want to go around twice, would one. (stolen from a commercial). I'm sure there will be others trying to give you advice, one of the main things I have found since surgery, I'm cold all the time. You hang in there and try not to worry too much, we're here to help, Ed

Hi Charmed, I am a T4 para due to SCI in a car accident in 1970. I had an emergency Ileostomy in Nov. '08 due to C. diff infection. I was very sick when I had surgery and was told I would die without it. I developed pneumonia after surgery and spent a month in ICU with a trach and feeding tube. My blood pressure has always been very low, but it was lower when I went to the hospital. I don't think I've ever been told that I have autonomic dysreflexia, but reading a description online, I'm sure I have experienced the symptoms. I had other infections starting in June of '08, which left me weak and unable to lift myself and chronic pain, so I believe my weakened condition at the time of surgery caused my complications. I also developed pressure sores that I am still trying to heal because I wasn't turned properly in ICU.
I spent 3 1/2 months in a specialized care facility after ICU before coming home.
So for me, the surgery was easy, the complications have been challenging.
I'm not sure why you're having the surgery, but I suggest you ask your surgeon lots of questions. And remember one thing I learned the hard way is that you have to be your own advocate.
Hope all goes well.

Hello Charmed, I'm sorry to hear of your upcoming surgery. I don't have any spinal injuries, but I just want you to know that if you want someone just to talk to and share your problems, sometimes it helps just to talk. I have had breast cancer, double mastectomies. I lost my colon and rectum due to ulcerative colitis. I'm also waiting to have further surgery due to a fistula and I know how important friends are. My husband works overseas, so I'm here with our son most of the time. My brothers and sisters are all in England, I now live in Texas and I am so blessed to have such good friends here. My son was only five when I first had the cancer, and over the past ten years I have been in and out of hospital so many times. I just never give up, I want to see my son grow up and have his own family. However bad it seems at the time, I know there are many others in a worse position. I trust that all the prayers that have been said for me will help and I shall keep you in my prayers and hope that you find answers to your problems and will gain the information you need from your surgeon. Good luck and if ever you need to talk, I can give you my number if you would like me to phone you any time, best wishes Sue

So many wonderful people here. I want to thank you Gutenberg, Clem, and Kathleen for such an uplifting feeling after reading your posts.

I have no family, so maybe this is a beginning to have one finally, so thanks for a kind welcome from everyone. So glad I have found this site.

Gutenberg and Clem, it sounds like you have been through a lot. I wonder if you have nerve damage from a spinal injury or did the surgery you had correct the nerve damage. I know 85% of people who have SCI have permanent nerve damage.

The autonomic dysreflexia is from nerve damage after SCI, and I have all the symptoms.

Kathleen, I will be having the colon surgery due to diverticulitis. I have always had a nervous stomach, and they say it is diverticulitis (I just wonder). Yes, I know there are many others worse off than others, but my concern is surviving the surgery that is facing me. I am 56 and want to live life to the fullest and can't right now with the scare of complications ahead.

I will be facing this alone, and that scares me too. I wish I could grab someone off the streets and say, "Hey, you are going to the hospital with me for support." Sounds crazy, huh, but I am scared to do this alone.

So thanks to all, and I appreciate you and your kindness. Would love to chat with you, Kathleen, so hopefully we can.

Hi and welcome!

Not the same scenario at all, but my stoma caused my back injury (by giving me a huge hernia) making me require surgery when a disc in my neck went! Had a C6/7 fusion - funnily enough, the only surgery I have had that has been successful, immediate relief!

Happy to chat if you need to, have a look at my profile or send me a message. I can reply but not send..

Take care

Rach xx

Hello again Charmed, good to hear back from you. I'm also 56 and I know surgery is a scary thing, but you just have to trust that everything will go well. If you would like to talk over the phone, I can give you my number, just let me know. I'm relatively new to this site and I'm already feeling like one of the family. It is a blessing to be able to discuss things here that other people might feel too grossed out to talk about. Stay strong and I look forward to hearing back. Best wishes, Sue

I had an L5 S1 laminectomy in 1999. I was pulling up in my driveway 24 hrs. after surgery. Immediate relief! It was before my ostomies. Welcome to the forum!

Hello Charmed: You certainly have been through a lot. I have arthritis in my back during the winter months and like your upcoming surgery, my surgery was due to diverticulitis. Since the colostomy, my digestion has been excellent and my arthritis just a little worse. Best of luck to you with your surgery, and make sure that your surgeon knows all about your blood pressure problem beforehand. CSC