PDL57
09-13-2003, 08:44 PM
Two neurosurgeons and an orthopedist have advised ACDF. I have two cervical disc compressing spine cord by 40%. I have had nerve conduction tests, mylogram, and MRI's to confirm. They advise due to spinal cord compression and the possibility of some paralysis if I would fall or be involved in a accident. They termed it "very serious". Previously in 2000, I had lumbar laminectomy and discectomy, very successful. The issue is that I feel 90% well. Very little pain and that is sporadic. The worst I have is numbness in right forefinger and thumb. I cannot bring myself to go through with the operation knowing that no surgery is always 100%, nor do I want to suffer any paralysis from a minor fall. I have two kids, 6 and 8, male, age 46. I would like to here from others in this boat. Thank you, great board, I am new to it.
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DepecheJan
09-13-2003, 09:59 PM
Hi PDL57!
I am in the same boat as you. I have a moderate to severe herniated disc at C5-6, with spinal cord compression and nerve root impingement. My pain is also not that bad. I do have a minor loss of strength in my left arm, some shakiness in my left hand, and some occasional tingling in my left arm. All and all, very tolerable for the most part. I have been to two NS, both have recommended ACDF. I didn't like the first NS--made the surgery sound too easy. I liked the second--he told it the way it is. Problem is that there are so many different schools of thought. He said that some doctors like to do surgery at the first sign of symptoms (because they have the best and quickest rate of recovery) while others won't operate until the patient is in dire pain. The first NS scared me with the paralysis thing. The second said that yes, I am at an increased with, but it would have to be a serious trama for me to be paralyzed. The second NS said that in ~6 years, the disc could be reabsorbed back into the body. My other predicament is that I am a 33 year old female. My DH are ready to start a family and getting pregnant now could exacerbate my symptoms and force me into surgery. I am 33 so I don't have many years to put pregnancy off. Surgery is a hard call to make. As you may read here, a lot of people have had a very difficult time with it and took a long time to recover. Some people's symptoms have been made worse post surgery, although some surgeries have been successful. All and all, I guess you have to weigh everything out and figure out what is best for you and your family.
I assume at this point you have already tried conservative treatment and it was unsuccessful, correct? Have you checked into artificial disc replacement? It is only available in the United States right now in clinical trials. Sounds very promising. Rather than using donor bone or hip bone to replace the disc, they use a prothesis made of titanium and polyurethane. The prothesthetic disc is similar to your own disc. When they use bone, they want the bone to fuse to the vertebrae. To help the fusion along, most NSs use a plate with screws. When that area is fused, you lose a little flexibility and more pressure is put on that area so more people are at an increased risk of blowing the discs above and below. All of this is eliminated with the ADR. The 2nd NS I went to was part of the clinical trial. I wasn't allowed into the trial because I am not in enough pain. The ADR should be approved in the next 2-3 years. Anyway, just mentioning it in case you are interested. You can try to get into the trial and or maybe check into it if you have the option of waiting for surgery.
Anyway, I am sorry if this isn't helpful. I completely understand how you feel. I teeter all the time with surgery. I am actually going to an orthopedic surgeon on Monday to get a third opinion. If you decide on surgery, make sure your doctor is someone you trust and feel comfortable with. I would also check their credentials to make sure they don't have any lawsuits pending against them.
Good luck with everything and let us know what you decide. If you proceed with surgery, we are a great prayer and support group.
Take care.
Jan
I am in the same boat as you. I have a moderate to severe herniated disc at C5-6, with spinal cord compression and nerve root impingement. My pain is also not that bad. I do have a minor loss of strength in my left arm, some shakiness in my left hand, and some occasional tingling in my left arm. All and all, very tolerable for the most part. I have been to two NS, both have recommended ACDF. I didn't like the first NS--made the surgery sound too easy. I liked the second--he told it the way it is. Problem is that there are so many different schools of thought. He said that some doctors like to do surgery at the first sign of symptoms (because they have the best and quickest rate of recovery) while others won't operate until the patient is in dire pain. The first NS scared me with the paralysis thing. The second said that yes, I am at an increased with, but it would have to be a serious trama for me to be paralyzed. The second NS said that in ~6 years, the disc could be reabsorbed back into the body. My other predicament is that I am a 33 year old female. My DH are ready to start a family and getting pregnant now could exacerbate my symptoms and force me into surgery. I am 33 so I don't have many years to put pregnancy off. Surgery is a hard call to make. As you may read here, a lot of people have had a very difficult time with it and took a long time to recover. Some people's symptoms have been made worse post surgery, although some surgeries have been successful. All and all, I guess you have to weigh everything out and figure out what is best for you and your family.
I assume at this point you have already tried conservative treatment and it was unsuccessful, correct? Have you checked into artificial disc replacement? It is only available in the United States right now in clinical trials. Sounds very promising. Rather than using donor bone or hip bone to replace the disc, they use a prothesis made of titanium and polyurethane. The prothesthetic disc is similar to your own disc. When they use bone, they want the bone to fuse to the vertebrae. To help the fusion along, most NSs use a plate with screws. When that area is fused, you lose a little flexibility and more pressure is put on that area so more people are at an increased risk of blowing the discs above and below. All of this is eliminated with the ADR. The 2nd NS I went to was part of the clinical trial. I wasn't allowed into the trial because I am not in enough pain. The ADR should be approved in the next 2-3 years. Anyway, just mentioning it in case you are interested. You can try to get into the trial and or maybe check into it if you have the option of waiting for surgery.
Anyway, I am sorry if this isn't helpful. I completely understand how you feel. I teeter all the time with surgery. I am actually going to an orthopedic surgeon on Monday to get a third opinion. If you decide on surgery, make sure your doctor is someone you trust and feel comfortable with. I would also check their credentials to make sure they don't have any lawsuits pending against them.
Good luck with everything and let us know what you decide. If you proceed with surgery, we are a great prayer and support group.
Take care.
Jan
luvwindnhair
09-13-2003, 10:21 PM
Hiya and welcome PDL57~
I am now 4 weeks post op ACDF of C6-7. I Have no regrets. My pre-surgery pain was also minimal. I had a hard time justifing the need to proceed. But I was also afriad that I would get in that "accident" and end up with paralysis too. Now that I have had the surgery, which by-the-way, they did use my hip bone to graft, I feel great. I have severe compresion of my nerves in my lumbar spine also. This I have had the discectomy/laminectomy on 3 yrs ago. Now I am waiting for my neck to heal so I can have my lumbar fusion. I know its a hard decision to make, and I think that when you are ready, you'll be ok with it. The best thing to do is find the right MD, that can make all the difference in decision making. Some people are happy to not have it, others like me, will never look back. Good luck, oh and I am young too, 38 female. Terrible thing to feel so old.
Tah Tah Cindy
------------------
L5/S1 herniation 7mm 01/18/00
Microdiscectomy/Laminectomy 10/12/00
Thoratic pain began Dx buldge @ T-8 08/02
Had MRI on Lumbar because pain was returning, also scaned T spine 8/02, Dx recurrent L5/S1 herniation and new herniation @ level L4/5
Cervical pain began 2/03
Had MRI~Dx herination @ level C 6/7
Had anterior decompresion with hardware and use of my own hip bone graft to C 6/7 8/14/03
I am now 4 weeks post op ACDF of C6-7. I Have no regrets. My pre-surgery pain was also minimal. I had a hard time justifing the need to proceed. But I was also afriad that I would get in that "accident" and end up with paralysis too. Now that I have had the surgery, which by-the-way, they did use my hip bone to graft, I feel great. I have severe compresion of my nerves in my lumbar spine also. This I have had the discectomy/laminectomy on 3 yrs ago. Now I am waiting for my neck to heal so I can have my lumbar fusion. I know its a hard decision to make, and I think that when you are ready, you'll be ok with it. The best thing to do is find the right MD, that can make all the difference in decision making. Some people are happy to not have it, others like me, will never look back. Good luck, oh and I am young too, 38 female. Terrible thing to feel so old.
Tah Tah Cindy
------------------
L5/S1 herniation 7mm 01/18/00
Microdiscectomy/Laminectomy 10/12/00
Thoratic pain began Dx buldge @ T-8 08/02
Had MRI on Lumbar because pain was returning, also scaned T spine 8/02, Dx recurrent L5/S1 herniation and new herniation @ level L4/5
Cervical pain began 2/03
Had MRI~Dx herination @ level C 6/7
Had anterior decompresion with hardware and use of my own hip bone graft to C 6/7 8/14/03
PDL57
09-14-2003, 06:38 PM
Jan and Cindy - Thank you both for the thoughts. I have been sitting on this fence for a few months now, and I probably will stay on it until something forces me off. Please post or reply how you are doing and Jan, if you do have it, pleae post. Best of luck!!
Sprytle
09-14-2003, 10:37 PM
PDL57-
I had a 3 level ACDF just over 1 year ago. I had very little pain, but had no temperature sensation in my hands. The big thing my doctors told me was that if I was involved in a car accident or such, I could end up a quadriplegic.
There are some web sites I could point you to, but I can't, due to the rules. But there are doctors that perform minimally invasive surgeries, especially in the neck area. One of these that people from around the country go to see is Dr. Hae-Dong Jho (drjho for short) who runs The Jho Institute for Minimally Invasive Neurosurgery in Pittsburg, PA. He does review your MRI's at no charge and will tell you if he believes his minimally invasive procedures are the correct method of treatment for you.
I was looking at his web-site earlier, and the specific cervical procedures he offers are Cervical Stenosis Surgery without Bone Fusion ; Minimally Invasive Cervical Stenosis Surgery (The Jho procedure for cervical stenosis): Spinal Cord Decompression via Anterior Foraminotomy for Spondylotic Cervical Stenosis, or Ossified Posterior Longitudinal Ligament (OPLL).
BTW, it seems we are related. I had a lumbar laminectomy back in 2000 as well. It was my first back surgery and it went off without a hitch. Then I had this neck procedure. I wish I knew about the minimally invasive surgeries before I did it.
I would offer to you that you should investigate any opportunity to avoid fusion, if possible. If you can't avoid fusion, come back to this site, and let us know when you're having the ACDF. You will get at least a dozen lists on "what to do" before and after the surgery. I will tell you that the lumbar sugery is a piece of cake compared to the cervical.
We wish you all the best in your research. Know as much as you can before going into this.
Sprytle
I had a 3 level ACDF just over 1 year ago. I had very little pain, but had no temperature sensation in my hands. The big thing my doctors told me was that if I was involved in a car accident or such, I could end up a quadriplegic.
There are some web sites I could point you to, but I can't, due to the rules. But there are doctors that perform minimally invasive surgeries, especially in the neck area. One of these that people from around the country go to see is Dr. Hae-Dong Jho (drjho for short) who runs The Jho Institute for Minimally Invasive Neurosurgery in Pittsburg, PA. He does review your MRI's at no charge and will tell you if he believes his minimally invasive procedures are the correct method of treatment for you.
I was looking at his web-site earlier, and the specific cervical procedures he offers are Cervical Stenosis Surgery without Bone Fusion ; Minimally Invasive Cervical Stenosis Surgery (The Jho procedure for cervical stenosis): Spinal Cord Decompression via Anterior Foraminotomy for Spondylotic Cervical Stenosis, or Ossified Posterior Longitudinal Ligament (OPLL).
BTW, it seems we are related. I had a lumbar laminectomy back in 2000 as well. It was my first back surgery and it went off without a hitch. Then I had this neck procedure. I wish I knew about the minimally invasive surgeries before I did it.
I would offer to you that you should investigate any opportunity to avoid fusion, if possible. If you can't avoid fusion, come back to this site, and let us know when you're having the ACDF. You will get at least a dozen lists on "what to do" before and after the surgery. I will tell you that the lumbar sugery is a piece of cake compared to the cervical.
We wish you all the best in your research. Know as much as you can before going into this.
Sprytle
geoffrey
09-14-2003, 11:49 PM
hello, i am on workers compensation so it took almost 10 months before surgery was approved and done and sometimes i blame the wait for the problems that i have had. only you can decide what is best, i wish i had known about this site before i had my surgery. ask questions, and more questions from the doctor and then ask everyone you know what they know about the doctor you are going to entrust your body to. i wish you the best with your decision as this is a tough one, i did it so i could return to my job that i loved and then found out after surgery that i would not be allowed to return.
BABS42
09-15-2003, 06:48 PM
PDL I read your reply on the other post, so I thought I would look you up and see whats going on. Just to set things straight, I did not already have the acdf. I am contemplating whether to or not to. Actually I thought I was ready to call NS today and schedule it but I had a fairly good day and didn't call.
I would think that a 40% compression of your spinal cord would be enough to scare you into having it, but everyone thinks differently. I was scared to death at first back in Jan, just knowing mine was touching the cord, but not enough to agree to it. I really think that if you survived lumbar surgery and did well afterward, you would most likely breeze through cervical which sounds more serious. But you must do what is right for you. Good luck to you and pray for the answer. It will come. Take care Babs
I would think that a 40% compression of your spinal cord would be enough to scare you into having it, but everyone thinks differently. I was scared to death at first back in Jan, just knowing mine was touching the cord, but not enough to agree to it. I really think that if you survived lumbar surgery and did well afterward, you would most likely breeze through cervical which sounds more serious. But you must do what is right for you. Good luck to you and pray for the answer. It will come. Take care Babs
Deborah2003
09-15-2003, 11:20 PM
I just had ACDF surgery with own hip bone a 10 days ago (C5-C6 & C6-C7). So far I am very pleased. I had severe pain in arm, shoulder, elbow, and wrist along with numbness in hand, forearm.. sometimes only thumb, index, & middle finger prior to surgery. I was very lucky that I did not have significant spinal cord compression. All the previous pain is gone.
If I could have had disc replacement instead of fusion I would have gone that route .. Alas it is not available in the USA yet.
I know it is a scary proposition... but with 3 Doctor's recommendations... well I would follow their recommendations.
If I could have had disc replacement instead of fusion I would have gone that route .. Alas it is not available in the USA yet.
I know it is a scary proposition... but with 3 Doctor's recommendations... well I would follow their recommendations.
Sick of Pain
10-11-2003, 08:51 PM
WOW!!! I just found this web site and now see that I am not alone. I will write more later but for now just want to say hello to all of you.
nero
10-14-2003, 10:34 PM
Itoo am advised that I have the worst kind of spinal chord compression from a c5 c6 herniated and sequestered disc that pushes on my spinal chord. If I dont' have surgery i'll be paralyzed..yikes.. yetthe pain is still less than when it first herniated nov.2000. I have wierd and new symptoms like constant pins and needles upon coughing laughing etc.
i also have l5 s1 disc herniation that pains inmy hip and leg terribly.. i hate pills but can tolerate tylenol 3 only ..percocet i can only take 1/4pill at a time or i get so sick...
my surgery is nov 10/03and so many say wait...others that have done well are not posting to us as they have been lucky to move past this predicament.
I know how difficult this decision is...i personally find it the worst situation that my life has been in.
I still treadmill, don't work or teach piano anymore...and cannotget lower back surgery until ACDF on neck according to surgeon...now one would put me under with neck this bad...
so just keep reading.,.and remember those who did disc surgery and are better dont generally need to whine or seek emotional support like the rest of us.
I cannot steer you with a conclusive answer but tell you what ever decision you make be sure...Iam not either and I have 4 weeks to change my mind...
Perhaps we should consider ourselves lucky to have these choices compared to others who suffer in a 3rd world. God only knows the answer and then again this is your journey not his.
Best of luck I am rooting for you
sincerely, NERO
i also have l5 s1 disc herniation that pains inmy hip and leg terribly.. i hate pills but can tolerate tylenol 3 only ..percocet i can only take 1/4pill at a time or i get so sick...
my surgery is nov 10/03and so many say wait...others that have done well are not posting to us as they have been lucky to move past this predicament.
I know how difficult this decision is...i personally find it the worst situation that my life has been in.
I still treadmill, don't work or teach piano anymore...and cannotget lower back surgery until ACDF on neck according to surgeon...now one would put me under with neck this bad...
so just keep reading.,.and remember those who did disc surgery and are better dont generally need to whine or seek emotional support like the rest of us.
I cannot steer you with a conclusive answer but tell you what ever decision you make be sure...Iam not either and I have 4 weeks to change my mind...
Perhaps we should consider ourselves lucky to have these choices compared to others who suffer in a 3rd world. God only knows the answer and then again this is your journey not his.
Best of luck I am rooting for you
sincerely, NERO
sroman127
10-15-2003, 08:26 AM
Hello, I had surgery in Feb. The excruciating pain I was in before surgery was gone from the moment I woke up in recovery. The surgery was not all that bad, but I did not have a fusion. The only thing I will tell you is explore all of your options, even if it means getting another opinion. I am left with pain on my right side that I never had before surgery. My neck is alot more unstable. I may have to have another surgery now for the disc above where I had the surgery, which by the way was C5-6. So, everyone is different, but I had no choice I had to have the surgery my disc was totally blown, the surgeon was picking fragments out of my spine. I wish you the best of luck and I am glad that you are not in too much pain!
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Feb.2003-ACD w/o fusion at C5-6.
Oct.2003-C4-5 disc bulging, C3-4 disc protrusion.
Degenerative Spondylosis, DDD, Arthritis, Spinal Stenosis, Bone Marrow Edema, etc...
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Feb.2003-ACD w/o fusion at C5-6.
Oct.2003-C4-5 disc bulging, C3-4 disc protrusion.
Degenerative Spondylosis, DDD, Arthritis, Spinal Stenosis, Bone Marrow Edema, etc...