Re: New member With ?? about severe neck pain

[Guest guest]

Hello, Kim. Welcome to the NS family. This is a great place to get information, support, rant, vent, whatever you need.

As for the cervical disc problems, although sarc can affect the spine & other bony structures, degenerative & ruptured discs are very common in folks without sarc. I would try to see a neurosurgeon, rather than an orthopedic surgeon, if you have a choice. You may be early enough in the process to benefit from traction, physical therapy or even chiropractic.

6 years ago I ruptured the disc at C 6-7, just turning over in bed. I thought it was a pulled shoulder muscle, because that's where it hurt, then was told by an ortho doc that it was a pinched nerve in my neck. Within a few days it felt like someone was twisting my arm off at the shoulder, hurt all the way down my arm, hand was numb. It was probably the worst pain I've ever felt. My neurologist was sure I'd need surgery, but I was getting ready to go to Anchorage, Alaska, for a medical conference & I just wasn't going to miss that trip! So I used traction, muscle relaxers & narcotics until after the trip. The surgery provided immediate pain relief; numbness & weakness of the arm lasted for several months, but eventually resolved. So get evaluated asap; maybe you can avoid surgery.

I'm 57 and have degenerative disc disease throughout most of my back, probably from 30+ years of poor body mechanics as a nurse. We know better, but just don't always do it, do we?

What helped my pain the most was firm pressure into the upper back, just below my shoulder blade, like a fist or a ball. At work I wadded up a small towel into a tight ball & taped it over. I would carry it with me & if I couldn't find a nurse or somebody to press their fist into my shoulder, I would back up against a wall & press as hard as I could against my homemade ball. I also used a nerf football in my car, between the seatback and my back! I know it sounds weird, but it did provide a little relief, more than the drugs.

I hope you get into a knowledgeable doctor soon & get some relief. I absolutely sympathize with you.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 02:02:59 -0000Hello my name is Kim and I am 40 yrs old and I was diagnosis with Sarcoidosis in August 05 by a lymph node biopsy from under my left arm pit. I have been doing pretty and I have not had much lung involvement at all.But now I started having severe neck pain a few months ago. I just tought I was sleeping wrong. Then I started having lots of left arm pain from my shoulder to my fingers. I saw my Rheumatologist and she did a neck x-ray. I heard back from her today and I was told I have narrowing of the spinal cord at C5, C6. She said that I needed to go see a back doctor right away. She also said something about a degenerated disc. I am hoping to get into the back tomorrow or Friday I have got to get something for this pain.Ok, now for a fears and concerns.Is there any chance that this could be NeuroSarcoisosis?ThanksKim~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hello, Kim. Welcome to the NS family. This is a great place to get information, support, rant, vent, whatever you need.

As for the cervical disc problems, although sarc can affect the spine & other bony structures, degenerative & ruptured discs are very common in folks without sarc. I would try to see a neurosurgeon, rather than an orthopedic surgeon, if you have a choice. You may be early enough in the process to benefit from traction, physical therapy or even chiropractic.

6 years ago I ruptured the disc at C 6-7, just turning over in bed. I thought it was a pulled shoulder muscle, because that's where it hurt, then was told by an ortho doc that it was a pinched nerve in my neck. Within a few days it felt like someone was twisting my arm off at the shoulder, hurt all the way down my arm, hand was numb. It was probably the worst pain I've ever felt. My neurologist was sure I'd need surgery, but I was getting ready to go to Anchorage, Alaska, for a medical conference & I just wasn't going to miss that trip! So I used traction, muscle relaxers & narcotics until after the trip. The surgery provided immediate pain relief; numbness & weakness of the arm lasted for several months, but eventually resolved. So get evaluated asap; maybe you can avoid surgery.

I'm 57 and have degenerative disc disease throughout most of my back, probably from 30+ years of poor body mechanics as a nurse. We know better, but just don't always do it, do we?

What helped my pain the most was firm pressure into the upper back, just below my shoulder blade, like a fist or a ball. At work I wadded up a small towel into a tight ball & taped it over. I would carry it with me & if I couldn't find a nurse or somebody to press their fist into my shoulder, I would back up against a wall & press as hard as I could against my homemade ball. I also used a nerf football in my car, between the seatback and my back! I know it sounds weird, but it did provide a little relief, more than the drugs.

I hope you get into a knowledgeable doctor soon & get some relief. I absolutely sympathize with you.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 02:02:59 -0000Hello my name is Kim and I am 40 yrs old and I was diagnosis with Sarcoidosis in August 05 by a lymph node biopsy from under my left arm pit. I have been doing pretty and I have not had much lung involvement at all.But now I started having severe neck pain a few months ago. I just tought I was sleeping wrong. Then I started having lots of left arm pain from my shoulder to my fingers. I saw my Rheumatologist and she did a neck x-ray. I heard back from her today and I was told I have narrowing of the spinal cord at C5, C6. She said that I needed to go see a back doctor right away. She also said something about a degenerated disc. I am hoping to get into the back tomorrow or Friday I have got to get something for this pain.Ok, now for a fears and concerns.Is there any chance that this could be NeuroSarcoisosis?ThanksKim~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hello, Kim. Welcome to the NS family. This is a great place to get information, support, rant, vent, whatever you need.

As for the cervical disc problems, although sarc can affect the spine & other bony structures, degenerative & ruptured discs are very common in folks without sarc. I would try to see a neurosurgeon, rather than an orthopedic surgeon, if you have a choice. You may be early enough in the process to benefit from traction, physical therapy or even chiropractic.

6 years ago I ruptured the disc at C 6-7, just turning over in bed. I thought it was a pulled shoulder muscle, because that's where it hurt, then was told by an ortho doc that it was a pinched nerve in my neck. Within a few days it felt like someone was twisting my arm off at the shoulder, hurt all the way down my arm, hand was numb. It was probably the worst pain I've ever felt. My neurologist was sure I'd need surgery, but I was getting ready to go to Anchorage, Alaska, for a medical conference & I just wasn't going to miss that trip! So I used traction, muscle relaxers & narcotics until after the trip. The surgery provided immediate pain relief; numbness & weakness of the arm lasted for several months, but eventually resolved. So get evaluated asap; maybe you can avoid surgery.

I'm 57 and have degenerative disc disease throughout most of my back, probably from 30+ years of poor body mechanics as a nurse. We know better, but just don't always do it, do we?

What helped my pain the most was firm pressure into the upper back, just below my shoulder blade, like a fist or a ball. At work I wadded up a small towel into a tight ball & taped it over. I would carry it with me & if I couldn't find a nurse or somebody to press their fist into my shoulder, I would back up against a wall & press as hard as I could against my homemade ball. I also used a nerf football in my car, between the seatback and my back! I know it sounds weird, but it did provide a little relief, more than the drugs.

I hope you get into a knowledgeable doctor soon & get some relief. I absolutely sympathize with you.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 02:02:59 -0000Hello my name is Kim and I am 40 yrs old and I was diagnosis with Sarcoidosis in August 05 by a lymph node biopsy from under my left arm pit. I have been doing pretty and I have not had much lung involvement at all.But now I started having severe neck pain a few months ago. I just tought I was sleeping wrong. Then I started having lots of left arm pain from my shoulder to my fingers. I saw my Rheumatologist and she did a neck x-ray. I heard back from her today and I was told I have narrowing of the spinal cord at C5, C6. She said that I needed to go see a back doctor right away. She also said something about a degenerated disc. I am hoping to get into the back tomorrow or Friday I have got to get something for this pain.Ok, now for a fears and concerns.Is there any chance that this could be NeuroSarcoisosis?ThanksKim~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks for your response Rose.

Well I the earlest appointment I could get with the Orthopedic back

doctor is for April 20th. I don't know if I can wait a month.

I was also give the choose by my Rhuem doctor to go to a pain

management doctor. What do you think? I still have not heard from my

PCP on the referal. So I am thinking about making and appointment for

tomorrow so I can go in and talk to him about my options.

I would love any advise.

Thanks

Kim

[Guest guest]

Thanks for your response Rose.

Well I the earlest appointment I could get with the Orthopedic back

doctor is for April 20th. I don't know if I can wait a month.

I was also give the choose by my Rhuem doctor to go to a pain

management doctor. What do you think? I still have not heard from my

PCP on the referal. So I am thinking about making and appointment for

tomorrow so I can go in and talk to him about my options.

I would love any advise.

Thanks

Kim

[Guest guest]

Thanks for your response Rose.

Well I the earlest appointment I could get with the Orthopedic back

doctor is for April 20th. I don't know if I can wait a month.

I was also give the choose by my Rhuem doctor to go to a pain

management doctor. What do you think? I still have not heard from my

PCP on the referal. So I am thinking about making and appointment for

tomorrow so I can go in and talk to him about my options.

I would love any advise.

Thanks

Kim

[Guest guest]

Kim, after suffering for over a week, I walked into my doctor's office & burst into tears at the reception desk. I said I can't stand this anymore; the orthopedic clinic where I'd been told it was a pinched nerve said I couldn't get an MRI for another week. Unfortunately the doctor had left for the day, but they told me to come back first thing in the morning. When I did, he saw me immediately (probably didn't want me bawling out in the waiting room) & told the nurse to get me in for an MRI that day. When I talked to her later, I didn't even remember seeing her, I was in so much pain. So I got the MRI 2 hours later!! Then got a referral to a neurologist, even though the OB docs I worked with said I should just go straight to a neurosurgeon. But you gotta jump through those insurance hoops. So the neurologist worked me in the following Wed., then got me into a surgeon one week later. I don't cry easily for pain (movies, books, newspaper articles, yeah), but I guess they could tell I wasn't putting on an act. Pacing around with my hand clutching my shoulder is pretty typical too, apparently. I couldn't sit still, stand still. Then after all that, the surgeon said he was 99% sure I'd need surgery, but that we could try traction first if I wanted. Nah, forget the traction, I wanted the surgery ASAP. Then I told him that I was going to Alaska in 2 weeks & he said no way. I either had to cancel my trip or wait until I came back to do the surgery. I had planned this trip for almost 2 years, so I asked for liberal doses of narcotics & muscle relaxers & off I went. I did use the traction, which seemed to help a tiny bit. It was a pneumatic deal, instead of the kind you hang from a door & stick your chin in. The one I used was like a dented pillow; just lay my neck in it & pumped it up. I could feel it stretching my neck. I did that 2-3 times a day; great fun in a hotel room full of women. Mostly I took my pain pills. I'm glad I took lots of photos of Alaska, because most of my memories are pretty foggy!

The point of all this is: don't try to be brave, or a "good" patient. Tell them how miserable you are, in person. Might work. And ask about the traction; I do think it helped a bit. But I couldn't use the over-the-door contraption; it caused more pain. The pump kind was expensive, but since I returned it within 30 days, there was no charge. I got it through the physical therapy dept.

Oh, one other thing, I never had any pain in my neck itself, but within a few days, my muscles in my neck were so tight that I couldn't turn my head enough to check traffic. I went to a massage therapist who worked it loose enough for me to drive, but YOWWWEEEE did it hurt. Try to go for massage sooner than I did.

Good luck & get someone to go with you as an advocate, in case they are not moved to action by your tears of despair.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 17:48:24 -0000Thanks for your response Rose.Well I the earlest appointment I could get with the Orthopedic back doctor is for April 20th. I don't know if I can wait a month.I was also give the choose by my Rhuem doctor to go to a pain management doctor. What do you think? I still have not heard from my PCP on the referal. So I am thinking about making and appointment for tomorrow so I can go in and talk to him about my options.I would love any advise. ThanksKim ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Kim, after suffering for over a week, I walked into my doctor's office & burst into tears at the reception desk. I said I can't stand this anymore; the orthopedic clinic where I'd been told it was a pinched nerve said I couldn't get an MRI for another week. Unfortunately the doctor had left for the day, but they told me to come back first thing in the morning. When I did, he saw me immediately (probably didn't want me bawling out in the waiting room) & told the nurse to get me in for an MRI that day. When I talked to her later, I didn't even remember seeing her, I was in so much pain. So I got the MRI 2 hours later!! Then got a referral to a neurologist, even though the OB docs I worked with said I should just go straight to a neurosurgeon. But you gotta jump through those insurance hoops. So the neurologist worked me in the following Wed., then got me into a surgeon one week later. I don't cry easily for pain (movies, books, newspaper articles, yeah), but I guess they could tell I wasn't putting on an act. Pacing around with my hand clutching my shoulder is pretty typical too, apparently. I couldn't sit still, stand still. Then after all that, the surgeon said he was 99% sure I'd need surgery, but that we could try traction first if I wanted. Nah, forget the traction, I wanted the surgery ASAP. Then I told him that I was going to Alaska in 2 weeks & he said no way. I either had to cancel my trip or wait until I came back to do the surgery. I had planned this trip for almost 2 years, so I asked for liberal doses of narcotics & muscle relaxers & off I went. I did use the traction, which seemed to help a tiny bit. It was a pneumatic deal, instead of the kind you hang from a door & stick your chin in. The one I used was like a dented pillow; just lay my neck in it & pumped it up. I could feel it stretching my neck. I did that 2-3 times a day; great fun in a hotel room full of women. Mostly I took my pain pills. I'm glad I took lots of photos of Alaska, because most of my memories are pretty foggy!

The point of all this is: don't try to be brave, or a "good" patient. Tell them how miserable you are, in person. Might work. And ask about the traction; I do think it helped a bit. But I couldn't use the over-the-door contraption; it caused more pain. The pump kind was expensive, but since I returned it within 30 days, there was no charge. I got it through the physical therapy dept.

Oh, one other thing, I never had any pain in my neck itself, but within a few days, my muscles in my neck were so tight that I couldn't turn my head enough to check traffic. I went to a massage therapist who worked it loose enough for me to drive, but YOWWWEEEE did it hurt. Try to go for massage sooner than I did.

Good luck & get someone to go with you as an advocate, in case they are not moved to action by your tears of despair.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 17:48:24 -0000Thanks for your response Rose.Well I the earlest appointment I could get with the Orthopedic back doctor is for April 20th. I don't know if I can wait a month.I was also give the choose by my Rhuem doctor to go to a pain management doctor. What do you think? I still have not heard from my PCP on the referal. So I am thinking about making and appointment for tomorrow so I can go in and talk to him about my options.I would love any advise. ThanksKim ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Kim, after suffering for over a week, I walked into my doctor's office & burst into tears at the reception desk. I said I can't stand this anymore; the orthopedic clinic where I'd been told it was a pinched nerve said I couldn't get an MRI for another week. Unfortunately the doctor had left for the day, but they told me to come back first thing in the morning. When I did, he saw me immediately (probably didn't want me bawling out in the waiting room) & told the nurse to get me in for an MRI that day. When I talked to her later, I didn't even remember seeing her, I was in so much pain. So I got the MRI 2 hours later!! Then got a referral to a neurologist, even though the OB docs I worked with said I should just go straight to a neurosurgeon. But you gotta jump through those insurance hoops. So the neurologist worked me in the following Wed., then got me into a surgeon one week later. I don't cry easily for pain (movies, books, newspaper articles, yeah), but I guess they could tell I wasn't putting on an act. Pacing around with my hand clutching my shoulder is pretty typical too, apparently. I couldn't sit still, stand still. Then after all that, the surgeon said he was 99% sure I'd need surgery, but that we could try traction first if I wanted. Nah, forget the traction, I wanted the surgery ASAP. Then I told him that I was going to Alaska in 2 weeks & he said no way. I either had to cancel my trip or wait until I came back to do the surgery. I had planned this trip for almost 2 years, so I asked for liberal doses of narcotics & muscle relaxers & off I went. I did use the traction, which seemed to help a tiny bit. It was a pneumatic deal, instead of the kind you hang from a door & stick your chin in. The one I used was like a dented pillow; just lay my neck in it & pumped it up. I could feel it stretching my neck. I did that 2-3 times a day; great fun in a hotel room full of women. Mostly I took my pain pills. I'm glad I took lots of photos of Alaska, because most of my memories are pretty foggy!

The point of all this is: don't try to be brave, or a "good" patient. Tell them how miserable you are, in person. Might work. And ask about the traction; I do think it helped a bit. But I couldn't use the over-the-door contraption; it caused more pain. The pump kind was expensive, but since I returned it within 30 days, there was no charge. I got it through the physical therapy dept.

Oh, one other thing, I never had any pain in my neck itself, but within a few days, my muscles in my neck were so tight that I couldn't turn my head enough to check traffic. I went to a massage therapist who worked it loose enough for me to drive, but YOWWWEEEE did it hurt. Try to go for massage sooner than I did.

Good luck & get someone to go with you as an advocate, in case they are not moved to action by your tears of despair.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: New member With ?? about severe neck painDate: Thu, 16 Mar 2006 17:48:24 -0000Thanks for your response Rose.Well I the earlest appointment I could get with the Orthopedic back doctor is for April 20th. I don't know if I can wait a month.I was also give the choose by my Rhuem doctor to go to a pain management doctor. What do you think? I still have not heard from my PCP on the referal. So I am thinking about making and appointment for tomorrow so I can go in and talk to him about my options.I would love any advise. ThanksKim ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Just a quick suggestion - I have trigger point when my neck acts up. I

go to a physical therapist who works exclusively with people with

trigger points. I have very limited range of motion when my neck is

acting up. He releases these trigger points without any meds or

injections. It is through heat, pressure on the trigger then some

maniuplation. It was very painful at first but then what sweet relief.

Just a thought.

Terri G.