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Old 08-12-2003, 06:36 PM   #1
Senior Member
 
Join Date: Dec 2002
Location: USA
Posts: 165
Renee016 HB User
Post Disc disease - what are your symptoms?

I was recently diagnosed with Degenerative Disc Disease in my lower back (L4-5 & L5-S1). I have been tested for everything from Lyme disease to Multiple Sclerosis and I am still not convinced that all my symptoms stem from this. Anyone with DDD or disc herniations (as I also have), please tell me of your symptoms.

Besides the lower back/pelvic pain and sciatica pain down to my ankle, I also have muscle spasms in thigh and in side, burning sensations or feeling "heat" in my thigh and back/buttocks, tingling in my feet and other areas, pain behind my knees, aching shins, pulling/stretching in calves, nausea, diarrhea, vertigo, neck pain/stiffness, sore on inside of elbows, tender points that hurt to touch but have no mark or bruise or bump, etc.

I would be very interested in hearing anyone's symptoms.

Thanks!
Renee

------------------
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!
__________________
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

 
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Old 08-13-2003, 05:32 AM   #2
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Join Date: Aug 2002
Location: PA United States
Posts: 403
ChristinaD HB User
Post

I have ALL of that!!
I have DDD also being worse at L4 L5 and L5 S1. I have all of those symptoms and then some! When your nerves are out of wack, everything goes nuts. I don't have everything as bad as some of it has calmed down a bit. It was at its worse when the inflammation was greater but I know what you mean. I still have all the leg pulling, cramping, hot feeling in leg and foot, I have the vertigo, and the elbow pain that hurts to touch like a bruise. I believe it is all related. I know that once the central nervouse system is a messed up that everything just goes biserk!!
Hope this helps you!
Christina

------------------
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore disc again. It is going on a year and my disc pain has subsided now I am faced with facet joint and bone problems restricting my movement.
Not sure what is next!
Still waiting to go into remission again but I think the damage is done!!
Current doctor say to wait it out.
Going for second opinion in July.
__________________
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

 
Old 08-13-2003, 07:09 AM   #3
Senior Member
 
Join Date: Aug 2003
Location: Rockaway, NJ, USA
Posts: 150
SharonJ HB User
Post

ChristinaD...hi. just wondering if you were able to get an appointment to see Dr. Errico. Your signature says that you are getting a second opinion in July, and I know you had told me in another thread that you were thinking of going to Dr. Errico. There are 2 other docs in NYC that were very highly recommended to me by the Chief of the Spine Center at ULCA. They are Arthur Jenkins at Mt Sinai and Frank Cammissa at the Hospital for Special Surgery. I just wanted to mention them as other possibilities to help you. It is heart breaking to see how much you have been through and I hope you can find the right doctor to help!!

------------------
Each and everyday you have the opportunity to Choose Your Attitude. Choose wisely.
************************
Grade 1 Spondylolisthesis for 26 years, recently progressed to Grade II
With marked canal and foraminal stenosis and severe compression of L5 Nerve root.
Scheduled for L5/S1 360 degree fusion on 9/8
DDD and bone spurs T11-S1
Herniated C3-C4
Disk/spur complex C4-C5
Significant bone spurs C5-C6
Can anyone say "just give me a whole new spine!"
__________________
Each and everyday you have the opportunity to Choose Your Attitude. Choose wisely.
************************
Grade 1 Spondylolisthesis for 26 years, recently progressed to Grade II
With marked canal and foraminal stenosis and severe compression of L5 Nerve root.
360 degree L5/S1 fusion on September 8th with 6 screws and 2 rods. My pain is 99.9% gone...this is the best thing I've ever done!
DDD and bone spurs T11-S1
Herniated C3-C4
Disk/spur complex C4-C5
Significant bone spurs C5-C6. Told that my C-spine will not be helped by surgery.

 
Old 08-13-2003, 07:23 AM   #4
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Join Date: Aug 2002
Location: PA United States
Posts: 403
ChristinaD HB User
Post

Hi Sharon,
No I haven't go an appt to see Dr. Errico. I am seeing the doctor that originally sent me for my scoliosis surgery 12 years ago. He is very interested is investigating my problem and trying to find a solution. I had a bone scan and he is trying to find out what is the cause of my pain. In which, I'm guessing it is my degenerating disc that is causing me all this grief. I think if a simple disectomy or something can take care of it, than maybe he can help. If he thinks it is more than that, then I will be making an appt. in NYC. I'm not going to travel that far when right now I do not want a 'revision' yet so I am waiting to see what happens here. I also heard about Dr. Boachie at the Hosptal for Special Surgery. I hear he is great for scoliosis revision too.
Thanks for your well wishes. I have an appt. Monday to see what my options are next. I'll keep everyone posted!

Christina
__________________
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

 
Old 08-13-2003, 07:23 AM   #5
Veteran
 
Join Date: Aug 2002
Location: PA United States
Posts: 403
ChristinaD HB User
Post

Hi Sharon,
No I haven't go an appt to see Dr. Errico. I am seeing the doctor that originally sent me for my scoliosis surgery 12 years ago. He is very interested is investigating my problem and trying to find a solution. I had a bone scan and he is trying to find out what is the cause of my pain. In which, I'm guessing it is my degenerating disc that is causing me all this grief. I think if a simple disectomy or something can take care of it, than maybe he can help. If he thinks it is more than that, then I will be making an appt. in NYC. I'm not going to travel that far when right now I do not want a 'revision' yet so I am waiting to see what happens here. I also heard about Dr. Boachie at the Hosptal for Special Surgery. I hear he is great for scoliosis revision too.
Thanks for your well wishes. I have an appt. Monday to see what my options are next. I'll keep everyone posted!

Christina
__________________
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

 
Old 08-13-2003, 11:09 PM   #6
Senior Member
 
Join Date: Jul 2003
Location: MINNEOTA,MN,
Posts: 278
kathy372001 HB User
Post

Hello Renee,
I too have DDD I have all the same symtomes that you have and more. It has gotten to the point that now Im in a wheel chair it makes it easier to get around without always asking someone to help me. I found out Nov 2002 that I have it also along with everything else I now have Irratated bowel syndrome which sucks. Every time I go to the Dr its like they find something else wrong. I hope this helps.
Kathy
__________________
DDD 2002
hernated disk
buldge disk
arthritis
IBS
wheelchair 2003

 
Old 08-18-2003, 05:48 PM   #7
Senior Member
 
Join Date: Dec 2002
Location: USA
Posts: 165
Renee016 HB User
Post

Hi, Kathy and Christina - thank you for your replies. Christina, you mentioned something about a bone scan - what exactly will this show and how do they do the test? You are very lucky to have a doctor who is willing not to give up on you and to help you find out what's causing your pain.

Keep us all posted on what your doctor says.
Take care, Renee
__________________
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

 
Old 08-18-2003, 10:31 PM   #8
Senior Member
 
Join Date: Mar 2003
Posts: 135
Rosarita HB User
Post

Hi Renee,

I have DDD also. L3-L4, L4-L5 and L5-S1. They operated on the second two not the first one, not herniated enough I guess. I had most of your symptoms, jerking at the waist, twitching, spasms, pain in the butt, legs and feet. My arms would also jerk. Neck started hurting before I had surgery and now they're starting to look at it. It started on one side and then went to two. As you can imagine I really didn't have a good cheek to sit on. As far as the tender spots are concerned, I did not have that.
I'll just say my nerves were completely jacked up.

Hope this helped,

Rosa

 
Old 08-19-2003, 05:35 AM   #9
Veteran
 
Join Date: Aug 2002
Location: PA United States
Posts: 403
ChristinaD HB User
Post

Hi Renee,
The bone scan shows any problems with the actual bone and joints themselves. Like, arthritis, cracks, fractures, bone spurs ect. My doctor didn't find anything like that and suggests that the disc 'rupture' is causing me my problems. I am going to be having a discectomy in Sept. I am hopeful that it will take care of my problems. I sooooo want this to go away. I know that the surgery is mainly for leg pain but I am praying that it will take away the sharp pain that is stabbing me in the back. I am a little scared since I have had that fusion for scoliosis but I am trusting the doctor as he seems very thorough with me.
How long have you been having these disc hernation problems? What are they doing for you?
I have been dealing with this this time around for 14 months and can't take it anymore as surgery is my only option. I am ready to take the plunge to see if it helps me!

Christina

------------------
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore disc again. It is going on a year and my disc pain has subsided now I am faced with facet joint and bone problems restricting my movement.
Not sure what is next!
Still waiting to go into remission again but I think the damage is done!!
Current doctor say to wait it out.
Going for second opinion in July.
__________________
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

 
Old 08-20-2003, 09:59 AM   #10
Junior Member
 
Join Date: Aug 2003
Location: Columbia, Missouri
Posts: 21
Dede HB User
Post

Have you been tested for Fibromyalgia? I have been reading alot about FM the last few days and you have alot of the symtoms. You might check it out.

 
Old 08-20-2003, 06:26 PM   #11
Senior Member
 
Join Date: Dec 2002
Location: USA
Posts: 165
Renee016 HB User
Post

DeDe - I've been wondering about fibromyalgia. I tested positive for Epstein-Barr virus last year and soon after was diagnosed with Chronic Fatigue Syndrome. From what I've read on fibromyalgia, they are starting to think there is a link with CFS. I have a lot of problems with my back, always did but what I don't understand is the sore spots I've been getting. On Sunday I had one down by my left ankle and could barely walk or put any weight on it. Yesterday and today I had it just below the inside of my right elbow on my forearm. It does not hurt unless I touch it - it feels like a bruise but there is no mark or bump of any kind.

I read some stuff on fibromyalgia and about the tender spots but it says you need like 8 out of 11 to be diagnosed and I don't have that many. Also, they go away and hop around a lot.

Christine - all my symptoms started back in November but they only found the DDD in my lower back last month. My doctors were reluctant to do any MRI's, CT's, etc. because of the Harrington Rod. When you had the bone scan, did they do your whole back (what type of hardware do you have anyway?). Were they able to check your old fusion for any cracks?

I completely understand how you feel about your upcoming discetctomy. I had one in my neck this past February. Did you speak with your doctor about an artificial disc? It's expected to be approved early next year. There are only a handful of doctors in the US who have been doing the surgery as part of a study and trial. There would be no fusion and you would not lose any motion. Just something to consider. Best wishes to you whatever you do (and keep us posted).

Renee
__________________
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

 
Old 08-21-2003, 06:31 AM   #12
Veteran
 
Join Date: Aug 2002
Location: PA United States
Posts: 403
ChristinaD HB User
Post

Hi Renee!
They did do the bone scan on my whole back and from what I understand, they would be able to tell if there were any cracks or fractures. I have two Harrington rods on each side of my spine from about T1 to L1.
I would suggest a bone scan. I demanded one and the doctor didn't disagree. If your doctor doesn't order one and you will have peace of mind if you have one then see someone else. I was sick and tire of noone listening to me and found someone who finally did. Now, all I have to do is hope I am doing the right thing. This doctor seems very concerned and is interested in helping me out. I just have to put my trust in him. He is the original doctor who sent me to Shriners Hospital when I was in high school for my fusion so I kinda have a link there.
I am just praying that this is the right choice.
I will keep everyone posted.
Oh, I forgot, I've often thought that I have fibro too because I have those sore spots all the time. Mostly, knee and elbow ones. It does feel bruised but there isn't never a bruise there. I swear it has something to do with us having the scoli fusion. You know, I just think that stuff is all linked.
Well, best of luck to you and don't give up!!!

Christina

------------------
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!
__________________
27 years old
1993: T1 to L1 fusion due to scoliosis at age 17
2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
June 2002: Had a relapse and tore/ruptured disc again.
Now I'm 14 months into it and the pain is still there.
Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

 
Old 08-23-2003, 06:00 PM   #13
Senior Member
 
Join Date: Dec 2002
Location: USA
Posts: 165
Renee016 HB User
Post

I have been contemplating a discogram. Right now I am so confused with what is going on with me that I don't know what to do next. One doctor says Chronic Fatigue, one doctor multiple sclerosis, another says DDD and that I need surgery!

Christina - it's very curious that you get those tender spots also. I recently read something the other day in a magazine that a doctor friend gave to me called "Fibromyalgia Aware" that said something about a link between FMS with scoliosis. But they really don't understand either condition, so it's like they're just grasping at straws.

When are you scheduled for surgery?

Renee

[This message has been edited by moderator2 (edited 08-23-2003).]
__________________
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

 
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