Opinions please

I’ve had MS for 10 years. Now I have several fractured vertebrae with L4 and L5 nerves crushed. Neurosurgeon is top guy in FL. I’ve pursued every conceivable conservative measure for the past 2 years. Neurosurgeon says time for surgery - 7 hours! Husband is health care advocate but doesn’t think he needs to be there most of the time. Says it’s illogical. I say it’s time for a new advocate and no husband. Thoughts?

[RoyceNewton]

new husband, I agree but of course your decision. What is the neurosurgeon trying to do.

My mother has 4 titanium bolts in her spine and still has lots of pain. She is 72 and for twenty three years it worked very well and she was happy with it.

[Hidden in reply to RoyceNewton]

If she still has pain,, why is she happy with it?

[RoyceNewton in reply to Hidden]

oh the pain does not go away as she says it is just degrees of pain and she is on top of the grass

[greaterexp]

If your condition is debilitating, surgery might be a good option. When I thought I needed surgery on my cervical spine stenosis, I looked very hard into the reputation and skill of the neurosurgeon. Neurosurgery and back surgery have come a long way in the past 20 years.

Maybe you need some better friendships and some quiet discussion with your husband to get the support you need. I sure hope you get the support and help you must have right now.

[Hidden in reply to greaterexp]

My friends have scattered. No one knows what to say. They are uncomfortable being around someone in a wheelchair. My family think I’m making everything up and have literally written me off. Husband thinks I’m a burden now that I don’t bring in a salary. I live in a small town. My neurosurgeon is the man people go to for second opinions. He is also the doctor’s doctor. I am fortunate to have the A team. Just scared and worried

[greaterexp in reply to Hidden]

Your neurosurgeon must have a great reputation. That’s wonderful. I’m so sorry you have so little emotional support, especially now. I know it’s not the same, but you have us to lean on emotionally as you go through this and the MS. We really understand.

Hang in there, and please keep us posted about what you decide and how you’re doing.

[Hidden in reply to greaterexp]

Also, there’s no such thing as quite time with my husband. Every discussion is an argument. I am looking for a professional health care advocate and

[rjoneslaw]

I can't answer the husband question

As for surgery get a second opinion just to make sure it's something that needs to be done and that you want it

[Hidden in reply to rjoneslaw]

Of course I don’t WANT it! My neurosurgeon IS the second opinion. I’m scared with no support.

[rjoneslaw in reply to Hidden]

I understand completely

[jackiesj in reply to Hidden]

I personally cant have my second opinion be a relative of any kind.narrow vistion of heart and medical knowledge.Power of attorney is different.unbiased medical opinion.surgeries have come far from even 5 yrs ago.a young mom 2 babies a head nurse...and when she had a ride in ambulance hospital thought it was a farce for drugs.she demanded action, ruptured back and fine surgeon, new job all is well...

[pamgarner]

Is it from the (probable falls you may have had) in tens years?The reason I say that is when i was first diagnosed with ms, you know you jump through hoops,I first had back pain went to neurosurgeon who found fractured vertabrae and did bone biopsy to make sure wasn't bone cancer since I couldn't tie it to a fall(later I could),surgery is so serious I would want a guarantee if I did that it would improve the situation you probably already have, the best of luck, so sorry for you

[Hidden in reply to pamgarner]

I have degenerative bone disease and stiff person syndrome. My body is dying, my mind is not. My friends have scattered, my family thinks I’m making everything up and my husband is more concerned about himself. I’m scared and alone.

[Hidden]

I think I’ll close this discussion. I thought I would find some help, comfort and advice.

[Mermaidia11]

@floridagirl58

‘I’m so sorry you have so little emotional support, especially now. I know it’s not the same, but you have us to lean on emotionally as you go through this and the MS. We really understand.’

‘The best of luck, so sorry for you’

‘Hang in there, and please keep us posted about what you decide and how you’re doing’.

You had lots of kind, supportive l and comforting comments chick? These people took the time to respond and reach out to you ?

I know you are scared and angry - but we are too, and trying to muddle through the best we can, too whilst being supportive to other members

We aren’t advocates or medical professsionals here, so not sure why you are so upset by the responses you got, or what you expected?

Your husband doesn’t sound like he is very empathetic, but maybe he feels like he can’t do right for doing wrong

I think Royce meant that she got 23 years relief after op, but is in pain now?

You’ve broken your back chick, and know you don’t want surgery; so u have two choices; have the op or carry on as you are?

I can’t imagine what you are going through, but I can imagine you getting through this.

So time to get those big girl pants on, be brave and make some tough, but right choices for you

Keep us posted darlin and good luck x

[Hidden]

I agree. If husband is health care advocate/proxy, he needs to be there. I suggest you get a new advocate before surgery. Personally, I have traveled 1,500 miles 3 times to be with my husband during lengthy surgeries. He had me. I had no one. From a very small town, surgeries were in St. Louis!

Health care advocate needs to be there in case decisions need to be made while you are under anesthesia.

[sashaming1]

According to my Neurologicalist (when explaining med's risks) you have to make the final decision yes-or-no based on your indidual risks. You have a doctor & husband advocate, and everybody has their own opinion - which are good inputs to consider, but you have to make the final decision. You may need a different advocate but keep the husband. He may not like it, but it's your call on your health decisions.