5 replies to this topic

[joes_grl]

hello,
I am new here as have been reading lots here and learning. I just wrote an entire post of our story and what is going on with my hubby, only to lose all the information by pressing the wrong key. I am going to attempt to sum it up and make it short , and not be so detailed.
Hubby had neck fusion in 2003, C4-C7, subsequently resulted in an infection which nearly killed him. Now to present, has numbess again and severe pain in his neck, even though he is on pain meds for life. The infection has left a scooped out large areas of no muscle or tissue at the surgery site. We went to his neurosurgeon roughly one month ago, due to worsening pain, test results show a spinal cord compression at C-2 , C-3 above where the fusion took place. Oh the hardware broke too and left that way. Surgeon told us he needed to have surgery again to relieve the compression and that surgery is not elective, however told us the time he chooses to have the surgery, is his choice. He told us a fall, "jarring", sudden move, etc could possibly cause a severage of the cord and leave him paralyzed from neck down. He fitted him with a neck brace. We looked at the films, and one can CLEARLY see the cord is being compressed and does not look good.
My husband has thought alot about this and has chosen not to have the surgery for fear he would not live through it. He feels blessed and "lucky" he states, to have survived the surgery in 2003. I told him I would support whatever decision he makes as it is his to make.
I am constantly worried however. He is on full disability and at home alone, while I work full time outside the home. I am so so fearful of coming home one day and finding him on the floor passed away or something due to sudden paralysis from a fall, or something else. He walks with a cane, and his symptoms are worsening. He admitted to me the other day that he had an incident where when he woke up, he could not roll over, could not move. He said he decided to just fall back to sleep. He said when he woke up again later, he could move and got out of bed, albeit ever so slowly. Am I over reacting? Dont you think with what the surgeon told us, my fears are a true possible scenario? PLEASE any comments, questions, suggestions, reactions etc are absolutely welcome, and needed. Oh, it is my hubby and I alone, our children are grown, he is 47 years old , a diabetic, with hight blood pressure, overweight, and smokes a pack a day. Thank you all so much for reading our story and PLEASE leave comments, advice, anything. Hope you all have a good day. Thanks again.

[cate]

Hi Joe's girl. That is a difficult call. my daughter is c5/6 and has the hardware . it has been successful for her, . and she is able to walk with crutches, Her cord is completely flattened, and will not rejuvernate, the longer the compression on the cord less chance of it recovering. Your husband seems to have been throught a lot, just wish you both well, and hope you can find the right decision for him.
Cate

[smokymtn memories]

I had bone fusion surgery aug 06. I was already using a cane and was close to being in a w/c. Mine was C 4-5-6.

Everyone has to make up their own mind, but I would do the surgery and take my chances again, if it meant I could still get around with a cane and not be totally bed/chair bound. It's bad enough the way I am.

Tell him I'm ten years older, could stand to loose some weight, have a heart murmur and high blood pressure, and smoke a pack a day.

Whatever you decide, good luck.

Edited by smokymtn memories, 31 December 2007 - 10:22 PM.

[kewlcatkez]

Hi,

I can only imagine your worry. It bet it takes a lot of gumption to not beg him to have the surgery, yet at the same time I am sure that the thoughts of surgery is very scary for you too.

Further to the advice of the others above, I wondered if your hubby and yourself had been able to talk with anyone who has been in a similar situation? The Spinal Injuries Association (SIA) in the UK 0800 980 0501, in the USA= National Spinal Cord Injury Association (NSCIA) Helpline: 800-962-9629, or google for other Countries will be able to give you advice and may be able to put you in touch with someone who has gone through similar, and had the surgery. Likewise, they may be able to put him in touch with those who chose not to. It just may of help to talk to someone who has been there, in the exact situation - like the previous poster has.

I feel for you both, and at 47 years old, he is very young to be living on such a knife edge for the foreseeable future. If he was 90, perhaps that would be the best option. Of course, I am over simplifying the choices and it is obviously a very serious surgery and choice.

I would also suggest that he seeks a 2nd or 3rd opinion. He is the UK a person is entitled to request and see a second or third opinion even, especially if the situation is quite rare or complex, which it seems your husband fulfills. In other Countries, similar medical rights exist.
It may be that they suggest the same, but you never know, he may see someone who has performed more of these risky surgeries or has a fresh idea. Again, if you are struggling to find such an opinion, then do get in touch with the Spinal association or similar for their advice.

Please let us know how things progress and how you and hubby are/get on,

Take care,

K

[robert ayres]

Hi

My wife had a fall causing c4/c5 injury she had surgery and neck brace fitted plus bone graft and plate
after just over 2 months in hospital the brace was removed. She had physio to learn to walk and came home that was 5 years ago. The M.R.I scan shows the cord is damaged and she is slower walking and seems to get more pain in her neck and back now. If surgery is going to benefit your partner making life better then maybe it is worth discussing with your surgeon.



robertayres

[TeeTee]

Hello, I have been undergoing surgery on different injuries from work for the last 5 years, both wrist, a torn shouder cuff and this last one I had a year ago in 2010 of a multilevel neck fusion, they went in threw the front and back of my neck putting in alot of Metal, Plates,clamps, 12 locking screws, metal cages between the disc's and bone graph. After a few months I started therapy and my hands and feet started going numb it was likc walling on ballons full of air, and my hands and elbow's would claw up like a little dead bird in the morning. It would take me hours and 2 pain pills just to get my arms and hands to stretch out to be able to push myself up to get out of bed. The numbness went away for a few months then came back, I started having lower back pains and pain in my spine and neck and lower abdomen (stomach), my back hurt so bad I was in tears. Then I started having a taste in my mouth like an infection, my kidneys and bladder were hurting and I would have cold sweats and wake up drentched in sweat that smelt like urine. This has been going on for a year now, I have repeatedly told my surgeon and primary doctor of this and they did a CT scan and said everything looked normal in my neck were the surgery was done. They never did blood work or any other test, but now it is so bad I almost past out just doing dishs yesturday and today all my teeth are loose, this must be one heck of an infection I'm thinking now, I am tired and always feeling sick and cant eat or taste anything and my kidneys and bladder and bowels are so painful I cant stand it. I made an appointment with my doctor over a month ago and again yesturday called them to let them know how back my lower back pain is and that my health is going down hill fast. But the secretary *(Nurse's) dont seem to care that it us a serious problem, they said I have to wait 3 more weeks for an appointment and if it get worst to go to te ER, I started looking on line to find some answers and found this site and your post's, I know they are old post's from 2007-08 and I'm hoping and praying your hubby is fine now, I was hoping you might be able to help me with answers too about what is happening with me at this point, I wake up crying and scared to death to wait 3 weeks, I think that if this is an infection that could possibly kill me the doctor should address it ASAP and not tell me to wait 3 weeks or go to ER if it get's worst, any answers would help or at least make me calm down some, the stress alone is killing me. The pain med's dont seem to help much anymore but just make me sicker:::>>??????? I am the same age as your hubby and am alone with no children or family so it is just me.,.,I am so mad that the nurse's dont seem to care, What can I do?