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Spinal Cord Disorders Message Board

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Re: Too Soon ?
Dec 2, 2003
No, actually the steroids didn't do anything. I didn't start to notice a change in my pain until I started PT. But I had also had an increase in my pain medicine. I haven't tried going without the pain medicine because the pain took me to mental anguish. I would just lay on the couch a cry like a baby. I don't know that I can handle that.

My life pretty much consists of just laying on the couch most of the day. I never leave the house except to go to the Doctor, my parents, or the grocery store with my fiance'. I don't drive anymore because I'm on the pain medicine. I'm still out on STD which will turn into LTD if I go thru with the surgery.

I don't think I have lost much strength in my right arm. Only when it is pins and needles. The worst is the pain that comes from the right side of my neck and up the back of my head behind my ear....HAS ANYBODY ELSE HAD THIS TYPE OF PAIN? I asked my ortho if it was coming from the small rupture (C5-6) and he said he couldn't be 100% sure.

I have been told by a Chiro and my Primary Doctor NOT to have the surgery, that it will heal on its own in time. That keeps pounding in my brain and then I think I made the wrong decision agreeing to the surgery. I just don't want to make a mistake. A lot of the boards I've read people have gone many years before deciding on surgery and I've only been going thru this for a few months.

I have a Mylegram in the morning. Which I'm also nervous about. I think that will help me. The doctor will be able to see better how my nerves and cord are being affected.

I just want to say I appreciate reading about each of your experiences....I think about and pray for each of you throughout my day. We don't know each other but getting advice, & encouragement really helps me.

** anybody with the pain in the head behind the ear ? What did your Doc say about that ?

[QUOTE=DonnaKay]Lexie -

*You* will know when it's time for surgery. I see you were taking steroids and they helped. What happened when you finished the steroids?

What happens if you take nothing for pain?

How has this affected your life? Do you NOT do things because of your pain?

Have you lost strength in your extremeties? If you have, you need to really observe yourself ... that can change to worse quickly.

You are already on short-term disability - that says a lot, if you ask me!

I have had two surgeries, 6 years apart - both times I just wanted someone to take me out of my misery - there was no getting comfortable, the pain was always there even with pain meds which numbed it a bit, but not completely.

You have quite a bit going on with your neck. If you can, maybe you should get a second opinion, just so you won't second guess your decision to have surgery. Go to a Neurosurgeon and see if he/she agrees with the Ortho. The myelogram will be a great thing to have on hand for the neurosurgeon to look at, along with any MRI films. Take them with you to the appointment. Good ones are hard to get into! Also, I understand your visiting your gp, but please don't listen to him about your spine. You need to go to a specialist.

I am sorry this has happened to you. People always ask me if I have been in a car accident (the brace is a dead giveaway). I tell them no, but I do wish that I had a fantastic story to tell. I, too, woke up one morning with each of my disks that had to be operated on. I have other problems in my neck, too, but they are not symptomatic ... not bothering me. My NS said some people just herniate disks, and I must be one of them. Sounds like you are, too!

Pay attention to your spinal cord! I believe it was Nero that said she was paralyzed for a short time because of her spinal cord involvement.

This is serious stuff, Lexie. I understand why you are reluctant to hop into surgery, but if you arm yourself with information and 2-3 respected opinions, you will feel a whole lot better.[/QUOTE]
Re: Too Soon ?
Dec 5, 2003

Well, I had my Myleogram Wednesday. The nightmare was actually before the test. It took 3 nurses and 5 sticks before they got my IV in. OUCH!!! I was sooo happy when the 3rd nurse finally got it in. I was almost ready to get up and walk gown and all (ha,ha). The myleogram was not too bad. The worse part was when they tilted me on that table..I thought somebody was ripping my backside out. But it was rather fast. The Doctor that did the procedure was great about telling me everything he was doing. Afterwards he came up to me and said, "your neck is a mess". He said I have a lot of spinal cord compression. He said that was worse than the nerve being compressed. I asked him what he thought about me having ACDF surgery based on what he was looking at..he said he would recommend it but that was between me and my Ortho. You think that counts as a 2nd opnion ? I am still considering going to another Ortho/Neuro though.

Let me know about your husband's cousin. What is a TENS ? I'm familiar with the epidural blocks..but my Doctor said he didn't think it will help in my particular situation. My Doctor has been conservative as well. Yeah, my doctor also did the myleogram for the surgery.

My fiance' is GREAT...I know he didn't sign up for all this and it has kind of thrown things off a little. We just bought a house in July. And were in the process of paying off our credit card bills. I started getting sick in August. Now I'm out on short term disability and not getting a full paycheck. So I have kind of put us in the poor house. Plus our intimate life has also suffered. Being in pain most of the time hasn't helped. I have a lot of guilt about it but he doesn't complain. We had talked about 9/2004..but no plans have been made. Everything is kind of on hold at this point. I worry so much about us financially planning a wedding is the last thing on my mind.

I hope you are doing well.


[QUOTE=DonnaKay]Lexie -

I'm sorry the steroids didn't help you. They helped me until the day after I stopped taking them. :-)

The reason I asked you all those questions is because it will help you answer whether or not YOU would be ready for surgery. I don't know anyone who was in as much pain as you, as long as you have been, whose body healed itself. But, I'm just me and haven't been around this board long, either.

Both times that I had to have surgery it happened pretty quick. The first surgery the pain started the last week of April and my surgery was June 5. The second surgery began with minimal pain on October 16 and had surgery November 6. (Six years apart.) I have no doubt in my mind that both surgeries were necessary. My surgeon is very conservative, and very well known and respected in the Houston area ... so I believe what he says.

I'm happy to hear you're going through with the myelogram. My surgeon says it is a roadmap to your nerves. He wouldn't even see me for the first surgery until I had a myelogram. By the way, my personal experience with the myelogram was that it didn't hurt at all. I had a positive experience, although I have read here about other's nightmares.

Please consider getting at least one more opinion from a specialist in the spine (even though it sounds like you really like your gp, he's not a specialist in this area). Then you can rest with the information if they all three say "don't operate". You can't live like you have been!

Just curious - how is your fiance handling all this? When is your wedding date? Gosh - I just thought of that!

Good luck! Keep us updated!


P.S. My husband's cousin has really bad pain in her head like you do. I need to find out what her doctor told her. The last time we spoke she had just had a preliminary appointment with him. She was going to go back and he was going to give her a TENS unit. (not sure of the spelling, so forgive me if it's wrong) I wonder if that would help you at all.[/QUOTE]

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