Help me be brave with NS - Spinal Cord Disorders Message Board

gryffindorfan · 09-09-2003, 08:57 PM

I could really use some advice and a pep talk on being proactive with my NS...How long does it usually take to get in to see a NS once referred by the Neuro anyway? My neuro referred me the second week in August and my appt is still not until 9/30...I had to leave work early today because my hands, arms neck and head hurt so much -- I just could not sit any longer. 9/30 seems so far away!

My symptoms: since 98
-- right hand tingles and goes numb; has become much more frequent in the past 5 weeks
-- arms ache as if I have been exercising too much -- that sure isn't the case!
-- nerves in right arm sensitive to pressure -- shocks travel up and out my fingertips -- can;t stand cold either
-- Neck aches -- am constantly rolling my shoulders to relieve pain -- neck makes strange "popping" (?) noises when I do that
-- Headaches start at base of neck and travel up sides of head to focus on right and left temples -- have always attributed to stress
-- Lightning bolts of pain shoot from the base of my neck down my arms and out my fingers about 60% of the time when I sneeze. One of the most painful things I have ever experienced.
-- The pad of my thumb on my right hand has been sensitized to touch for past 3-4 weeks -- tingles and shocks when touched.
-- Last two weeks my left arm has started to experience similar symptoms as right.

CTS has been (painfully) ruled out not once, not twice but three separate times...last test did show a marked delay in response in the nerve that runs down into my right pinkie for what it's worth but dr said it wasn't from CTS...2 MRIs, 4 years apart ... 1st one in 99 said herniation at C5/6 with osteophyte in contact with spinal cord -- ortho surg said he disagreed (even though he pointed ut where something was touching the spinal column...siad it was a flare-up , inflammation based...would not operate unless I lost use of the arm ... put me on NSAIDs, exercise and rest during "flare-ups" -- NSAIDs no longer work, exercise makes my hand go numb, rest works some as long as I lay on my bed and do nothing!

2nd MRI in aug 03: do not understand it all -- C3/4 bulge with moderate left foraminal (I do not have report in front ofme but that was the jist) signs of osteoarthritis and degeneration. C5/7 moderate herniation with bulge and right foraminal involvement (?) something about slight intrusion into the spinal column ... degeneration ... and something called reverse lordosis, which I found on the web and it said it meant the curve of my neck is the opposite of what it should be....that does not sound too good to me but my Nuro never even mentioned it.

For four years i have tolerated this as a necessary evil in my life, but whether this is just a longer flare-up or something else has happened I do not want to deal with this anymore. As silly as it sounds, I want to paint my living room in a weekend instead of the three weeks it seems to be taking me because I can only work for very short periods of time before the pain makes me have to stop. I want to write in my journal and not have to stop every five minutes because my hand is ether cramping or completely numb....I am discovering that life really is in the details.

ANYWAY -- does anyone out there have any words of wisdom as I prepare for the neurosurgeon? I do not want a repeat of my 15 minute "consultation" with the Ortho guy in 99 ... I did not know any better, i believed him...he was the doctor. Man have I smartened up since then! I want this over and while the idea of surgery absolutely terrifies me, if this disc "flare-up" hasn't gotten better in 4 years...

What should I do if he says surgery is not indicated, try NSAIDs try painkillers or muscle relaxants (been there, can't tolerate them)? Is he the sole arbiter of this decision?

Help me be brave!!! I do not do confrontation well...I have read some of your posts and you all seem to know how to get what you need! I need some of that!!

Thanks!
Terry

HERMIT · 09-10-2003, 05:35 AM

If you do not handle confrontation well, you may have problems.
Make a list of all questions you want answered--and write his answers down. You will forget as soon as you walk in his office,
Bring a friend or relative who is more assertive than you just in case.
Explain your symptoms completely--write em down and make sure he does tests to evaluate your problems.
An MRI is far more accurate than a CT scan---it can measure tumors down to the millimeter. I bought a copy of my MRI scans--they put them on CD now. I can look at them on my home computer. It cost me 23 bucks.
If he decides surgery is the way to go--make sure he explains every detail--so you know what to expect. Ask about what may happen if surgery does not go well.

That's all I can think of--just remember these guys are just people like you--even though some are arrogant to the point of thinking they are god.
I remember a movie with a male actor with the name "Hurt"--about an arrogant doctor who comes down with cancer and gets to see it from a patient's point of view--maybe someone here knows the name?
Good luck!!

lifeonhold2003 · 09-10-2003, 07:47 AM

I can definitely relate to your problem. I began in June 2002 with my PCP. After 3 NS, CT scan, MRI, EMG/NVG, 3 epidural steroid shots and PT, they decided to do a Myelogram. This is the test that showed that 2 nerves were being pinched at C5/6. The other tests did not reveal any problems. The disc was herniated. Obviously, I too have a problem with agression. I am a little over 4 mos. post op and still having the same pain as before. In fact, the numbness is now becoming a constant thing. I too am trying to figure out exactly what to say whenever I can get into see my NS.

The most important thing is to explain exactly what you are feeling and don't down play it. I don't believe I truly ever got the point across to them about how much pain I was really in. For one thing, they don't give you much time to explain what you are going through. Then, you feel like your just complaining and maybe you just need to tough it out. And heaven forbid that you tell them that the medicine is not helping, because then they make you feel like your just trying to get drugs. When I saw the first NS, he didn't check my reflexes or anything. He said the first thing we need to do is to quit throwing drugs at you and find out what is wrong. He wanted to send me to an Ortho and to a Sleep Ctr to find out why I couldn't sleep. What a jerk! The thing is, when the problem is nerve related, there are only certain drugs that will give you some relief. Nothing will really take the pain away.

Anyway, I wish you luck in your long journey. I wish I had some better advice to give you.

------------------
AKA: Julie

4/23/03 - Anterior Cervical Discectomy w/Fusion C5/6 - donor bone with titanium plate, 4 screws, no collar post-op

gryffindorfan · 09-10-2003, 08:02 AM

Thank you for your replies...I can be assertive with people but for some reason when it comes to all of this and doctors I get emotional and then they really get all patronizing or stop listening altogether. I will try to bring my husband with me -- then my only fear will be that he will start yelling at the guy for not listenting to me or taking me seriously enough!

I am worried that a jolt I took a few days after my last MRI might have done something because this is the first time the symptoms have been this bad. They have never really been on my left side and my thumb is really worrying me. I know that if something is compressing a nerve root that damage could be permanent -- which may unfortunately explain your continuing pain, Julie. I could live with my thumb like this forever if I have to, but I would like to stop it there if I can!

Also are nerve blocks etc. only temporary? If I get one now and the pain etc subside and then I canoe again in 6 months or fall -- or whatever -- does it all happen again? A friend at work says her husband is fine -- as long as he is really careful but if he so much as even picks up their dog, wham, he is back in pain. I have two young children -- I do not have a lot of choice to not do things that stress my back/neck. AAARRRGGGHHH!

Thanks for the vent -- and the advice!

lifeonhold2003 · 09-12-2003, 04:31 PM

Terry - Sorry for the late response. I've been having a little trouble with my internet access for some reason.

Emotional, I sure know what you mean. I’ll try to explain what I’m going through, start crying, and then he really looks at me like I’m crazy.

As I said, I had 3 epidural steroid shots prior to surgery. These did not help. Just this past month, my NS sent me to a pain specialist. He told me that sometimes the shots don’t work before surgery such as in my case when the nerves were compressed. He said that now since the problem had been fixed (supposedly) that the shots may have a better chance of being able to calm things down (pain/burning from inflamed, raw nerves). Well, I had 2 shots; however, neither has helped. I decided not to have the third. Both times, it took 4-5 days of increased intense burning before I would get back to my normal pitiful state.

I have talked with several people who said that the shots really helped them and have lasted as long as a year and a half. I believe it is about a 50/50 shot. I guess it just depends on the type of shot and how it is administered.