cotal
04-02-2003, 01:03 AM
I've put off surgery for 5 years, but realize that it is inevitable.
What are people's experiences asking their Neurosurgeons for past patient references?
Mine gave me two references. Both though he was top notch, one patient he helped immensely, the second patient liked the Doc and the facility in NYC, but after 2 fusions questioned whether he had helped her or hurt her. Ergo my reluctance...
On my last visit, I've asked the Doc and his staff again for a 2 level fusion referal from someone he operated on at least a year ago.
-BJ
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1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled
What are people's experiences asking their Neurosurgeons for past patient references?
Mine gave me two references. Both though he was top notch, one patient he helped immensely, the second patient liked the Doc and the facility in NYC, but after 2 fusions questioned whether he had helped her or hurt her. Ergo my reluctance...
On my last visit, I've asked the Doc and his staff again for a 2 level fusion referal from someone he operated on at least a year ago.
-BJ
------------------
1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled
Sponsor
BWL
04-02-2003, 08:21 AM
Cotal,
Welcome to the board.
The problem with fusion is that there no guarantees that it will work. On the other hand, I was lucky and did get immediate relief. Some of my friends on this board have similar success stories. I am only two months post-op for a single level, but am cautiously optimistic about my long-term prospects.
I am in NYC and my surgeon is considered one of the pioneers here in Ny and one of the best. He can be difficult to see and there is no guarantee that he personally will take your case. Even if he operates on you he does not take care of your post-op care. His team takes care of follow-up, however he reviews all records and films. This isn't ego, he is a workaholic and focuses his time on surgery. He does get involved if there are any issues. My hospital experience was less than stellar because of a roommate situation and my room was depressing, but I would go back for my docs skill.
I was at Lenox Hill and can give you my surgeon's name if you like. If you follow football at all, he was the guy that fixed Dennis Byrd of the Jets a few years back when he made his miraculous recovery from expected quad to walking out for a coin toss less than one year later (not as a player). There is also a top notch guy at Hospital for Special Surgery who was my other consideration.
I admire the depth of your research. Patient references. Well done.
Feel well,
Bruce :wave:
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ACDF with plating and donor bone C6-7 (1/29/03)
Welcome to the board.
The problem with fusion is that there no guarantees that it will work. On the other hand, I was lucky and did get immediate relief. Some of my friends on this board have similar success stories. I am only two months post-op for a single level, but am cautiously optimistic about my long-term prospects.
I am in NYC and my surgeon is considered one of the pioneers here in Ny and one of the best. He can be difficult to see and there is no guarantee that he personally will take your case. Even if he operates on you he does not take care of your post-op care. His team takes care of follow-up, however he reviews all records and films. This isn't ego, he is a workaholic and focuses his time on surgery. He does get involved if there are any issues. My hospital experience was less than stellar because of a roommate situation and my room was depressing, but I would go back for my docs skill.
I was at Lenox Hill and can give you my surgeon's name if you like. If you follow football at all, he was the guy that fixed Dennis Byrd of the Jets a few years back when he made his miraculous recovery from expected quad to walking out for a coin toss less than one year later (not as a player). There is also a top notch guy at Hospital for Special Surgery who was my other consideration.
I admire the depth of your research. Patient references. Well done.
Feel well,
Bruce :wave:
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
cotal
04-03-2003, 12:37 AM
Thanks for sharing your story Bruce.
Actually I am in contact with the Doc from the Hospital for Special Surgery in NYC. Over the past 5 years, I have interviewed 5 different Neurosurgeons. Having some medical training myself and two advanced degrees, I actually spent several days pouring over medical journals and wrote a paper on the topic (not published).
I've also been following advances in prosthetics and consulted with a physician in Europe, and have spoken to other practitioners who are advancing the technology in the US. My own condition appears to be too involved to attempt two prosthetics, however.
Of the 5 surgeons I met, this doctor is by far the most practiced and articulate and have no reservations about his abilities whatsoever. There was one other exceptional surgeon I met in Springfield, Mass who had an unfortunate airplane accident which took his life.
This board offers a great service in that it allows people like us with similar ailments to share our stories.
I've read a lot of posts here. Most are from people like us who are about to undergo surgery, or are newly post-op. In other places, I've read a lot of "operations gone bad" stories too. While it's probably true that mostly the people with negative experiences write in, I'd like to hear from people who had fusion, especially multiple level fusions a year or more ago who have positive things to say.
I guess what I'm saying is that I trust my Doc 100%, but the procedure itself may just offer marginal improvement at best, even with the best surgeon under ideal conditions.
I've put off surgery for 5 years so far and do not regret the decision so far. I hope I can write back in a a couple of months post-op and say "Why did I wait so Long!".
BJ
------------------
1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled
Actually I am in contact with the Doc from the Hospital for Special Surgery in NYC. Over the past 5 years, I have interviewed 5 different Neurosurgeons. Having some medical training myself and two advanced degrees, I actually spent several days pouring over medical journals and wrote a paper on the topic (not published).
I've also been following advances in prosthetics and consulted with a physician in Europe, and have spoken to other practitioners who are advancing the technology in the US. My own condition appears to be too involved to attempt two prosthetics, however.
Of the 5 surgeons I met, this doctor is by far the most practiced and articulate and have no reservations about his abilities whatsoever. There was one other exceptional surgeon I met in Springfield, Mass who had an unfortunate airplane accident which took his life.
This board offers a great service in that it allows people like us with similar ailments to share our stories.
I've read a lot of posts here. Most are from people like us who are about to undergo surgery, or are newly post-op. In other places, I've read a lot of "operations gone bad" stories too. While it's probably true that mostly the people with negative experiences write in, I'd like to hear from people who had fusion, especially multiple level fusions a year or more ago who have positive things to say.
I guess what I'm saying is that I trust my Doc 100%, but the procedure itself may just offer marginal improvement at best, even with the best surgeon under ideal conditions.
I've put off surgery for 5 years so far and do not regret the decision so far. I hope I can write back in a a couple of months post-op and say "Why did I wait so Long!".
BJ
------------------
1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled
BWL
04-03-2003, 12:44 AM
Hi BJ,
Just curious who you're speaking with at Special Surgery. Camissa? It's great that you're that comfortable with your choice. It makes all the difference.
I can understand your hesitancy and I feel for the fact you've gone through 5 years of this. I'm lucky in that I was quick from start to finish with no real choice in the matter.
I too hope you will soon be posting some record setting recovery stories.
Feel well,
Bruce :)
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ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-02-2003).]
Just curious who you're speaking with at Special Surgery. Camissa? It's great that you're that comfortable with your choice. It makes all the difference.
I can understand your hesitancy and I feel for the fact you've gone through 5 years of this. I'm lucky in that I was quick from start to finish with no real choice in the matter.
I too hope you will soon be posting some record setting recovery stories.
Feel well,
Bruce :)
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-02-2003).]
cotal
04-04-2003, 09:00 PM
I've heard a lot of reports and stories from people who have had surgery years ago and are worse off than ever, who have gone back for follow up operations,etc.
I've never spoken to anyone or read any stories that read like this: "I had a 2 level ACDF in 1995 and felt better ever since." Has anyone?
BJ
re: surgical references, I don't feel comfortable mentioning the names of specific practitioners in a public forum. For all those interested however, keep in mind that most cervical surgical teams operate in two, a neurosurgeon prepares the site, and an osteopathic surgeon implants the corrective measures. Some Doctors take on both roles. Most consultations are conducted with the Neurosurgeon but IMHO, the Osteopath may have the more critical role.
I've never spoken to anyone or read any stories that read like this: "I had a 2 level ACDF in 1995 and felt better ever since." Has anyone?
BJ
re: surgical references, I don't feel comfortable mentioning the names of specific practitioners in a public forum. For all those interested however, keep in mind that most cervical surgical teams operate in two, a neurosurgeon prepares the site, and an osteopathic surgeon implants the corrective measures. Some Doctors take on both roles. Most consultations are conducted with the Neurosurgeon but IMHO, the Osteopath may have the more critical role.
BWL
04-04-2003, 09:29 PM
Cotal,
While I'm only two months out I definitely feel better since surgery and I truly hope to be two years from now. I had pain that wouldn't allow me to work or effectively communicate with anyone and that was not the quality of life to which I aspired.
I am not the same as I was before my rupture or surgery and I don't believe I ever will be.
I've damage now that is probably permanent in nature and for me that's the big deal. I can adapt my activities to live with less range of motion and the Idiosyncrasies of fusion, but I couldn't live at all before.
It's a big decision, but sometimes you just don't have a choice.
Be well,
Bruce
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-04-2003).]
While I'm only two months out I definitely feel better since surgery and I truly hope to be two years from now. I had pain that wouldn't allow me to work or effectively communicate with anyone and that was not the quality of life to which I aspired.
I am not the same as I was before my rupture or surgery and I don't believe I ever will be.
I've damage now that is probably permanent in nature and for me that's the big deal. I can adapt my activities to live with less range of motion and the Idiosyncrasies of fusion, but I couldn't live at all before.
It's a big decision, but sometimes you just don't have a choice.
Be well,
Bruce
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-04-2003).]
Debbie2
04-04-2003, 09:42 PM
I'm with my pal Bruce, I have not one regret. I was miserable before surgery... and could not function. Busy as I am, I suffered physcially and emotionally.
But I also had a fabulous surgeon :D
Debbie
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Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
But I also had a fabulous surgeon :D
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
winged phantom
04-05-2003, 10:31 AM
Hi BJ,
Welcome to the board. You seem to have thoroughly done your homework. But sometimes it seems that the more you know, the worse off you are. I hope you will take that in the spirit in which it's meant and not take great offense. I have felt many times after being here on the boards or on the internet that I know just enough to be dangerous and like a deer caught in the headlights.
I had a microdiskectomy at C5-6 in 1989 (no fusion). Then after a few small episodes of jerking my spine and re-injuring things, I developed chronic pain. My doctor labeled it fibromyalgia, and I've tried many medications, deep tissue massage, and acupuncture, as well as a healthy dose of denial. All to no avail. Then this fall I became noticeably worse and demanded an MRI. It showed two or three bulging discs and mild to severe stenosis, as well as spurring, etc..... So I have physical conditions to explain all my symptoms, and I wish I'd had an MRI done at least 5 years ago. I thought I had taken care of my neck long ago, but I've since learned a few things: 1)the original site should have been fused, 2) stenosis is progressive, and 3) my new surgeon says I should get 15-20 years out of this surgery. Which sounds to me like this issue will be revisited some time down the road. So I've got a bad neck; I've abused it in the past, in work and in play, and now I pay for it.
Do I regret the first surgery? No, as I was in severe pain for 6 months before they decided to do it. And now I'm about to have a three level fusion; the choice was "easy": I no longer have a life. No, I'm not on a lot of meds, but I sure wish the pain would go away. I don't want to be dopey all day, though. But I hope my injury is not so old that I won't get relief. On the other hand, the stenosis and pressure on my cord must be relieved before I get permanent damage that I do not yet realize (stenosis may not be completely symptomatic, I guess, until too late).
So anyway, I guess you have to weigh not only the pros and cons, but look at your quality of life. Somewhere along that path you will find your answer, I hope. Good luck with your decisions.
wr :wave:
Welcome to the board. You seem to have thoroughly done your homework. But sometimes it seems that the more you know, the worse off you are. I hope you will take that in the spirit in which it's meant and not take great offense. I have felt many times after being here on the boards or on the internet that I know just enough to be dangerous and like a deer caught in the headlights.
I had a microdiskectomy at C5-6 in 1989 (no fusion). Then after a few small episodes of jerking my spine and re-injuring things, I developed chronic pain. My doctor labeled it fibromyalgia, and I've tried many medications, deep tissue massage, and acupuncture, as well as a healthy dose of denial. All to no avail. Then this fall I became noticeably worse and demanded an MRI. It showed two or three bulging discs and mild to severe stenosis, as well as spurring, etc..... So I have physical conditions to explain all my symptoms, and I wish I'd had an MRI done at least 5 years ago. I thought I had taken care of my neck long ago, but I've since learned a few things: 1)the original site should have been fused, 2) stenosis is progressive, and 3) my new surgeon says I should get 15-20 years out of this surgery. Which sounds to me like this issue will be revisited some time down the road. So I've got a bad neck; I've abused it in the past, in work and in play, and now I pay for it.
Do I regret the first surgery? No, as I was in severe pain for 6 months before they decided to do it. And now I'm about to have a three level fusion; the choice was "easy": I no longer have a life. No, I'm not on a lot of meds, but I sure wish the pain would go away. I don't want to be dopey all day, though. But I hope my injury is not so old that I won't get relief. On the other hand, the stenosis and pressure on my cord must be relieved before I get permanent damage that I do not yet realize (stenosis may not be completely symptomatic, I guess, until too late).
So anyway, I guess you have to weigh not only the pros and cons, but look at your quality of life. Somewhere along that path you will find your answer, I hope. Good luck with your decisions.
wr :wave:
cotal
04-06-2003, 01:08 AM
I think Bruce - BWL has a very healthy attitude about what has transpired and what lies ahead. A lot of what goes on in medicine (it's an art, not a science!) cannot be quantified. Your positive mental attitude is a HUGE factor in your favor. I hope we can all pursue our situations with the same.
The physical and emotional drain that affected Debbie can really sap strength from you in many ways. It was the right thing to do Debbie, before your condition drained you to the point where OTHER ailments would hurt you as bad or worse than the compression.
WR (Winged Phantom)'s real condition appears to have been misdiagnosed, and now he has to play catch up to get to a stable condition.
While my goal of getting some direct feedback from surgical recipients of years past is not appearing to pan out, I have taken away a great deal from this discussion thread. Thank you for sharing.
To give an idea of my status, my radiology clearly shows two levels of compression, and osteophytic growth C5-C6 and C6-C7. Surprisingly though I have no real muscle comprimise in my arms, little or no affect of balance. My forearms are almost constantly sore (from the compression) and my hands are numb and middle fingers tingle and are super sensitive. I used to take pain medication, but I've convinced myself that Im not in "pain" per se. I do wake up sometimes in the night from the lack of feeling and sensitivity in my hands and arms and feel worse in the morning.
The Docs are telling me what WR is hearing, that the effects of any compression i.e. cord damage are most likely permanent as the cord is very difficult to heal once damaged, and that I should go for surgery on that basis alone, that is to halt the progression of the damage.
On the other hand, I haven't seen a shrink, but if it did, I would tell him that I do not think I am as "Bad Off" as other patients are. I'm not in as much pain as Debbie or Bruce were for example. The post-op is a burden on my family too. I am holding off because I don't want others to be put off on my behalf. God forbid if a surgical fluke occured and I was incapacitated, or died, it would also be an real burden on others...
BJ
The physical and emotional drain that affected Debbie can really sap strength from you in many ways. It was the right thing to do Debbie, before your condition drained you to the point where OTHER ailments would hurt you as bad or worse than the compression.
WR (Winged Phantom)'s real condition appears to have been misdiagnosed, and now he has to play catch up to get to a stable condition.
While my goal of getting some direct feedback from surgical recipients of years past is not appearing to pan out, I have taken away a great deal from this discussion thread. Thank you for sharing.
To give an idea of my status, my radiology clearly shows two levels of compression, and osteophytic growth C5-C6 and C6-C7. Surprisingly though I have no real muscle comprimise in my arms, little or no affect of balance. My forearms are almost constantly sore (from the compression) and my hands are numb and middle fingers tingle and are super sensitive. I used to take pain medication, but I've convinced myself that Im not in "pain" per se. I do wake up sometimes in the night from the lack of feeling and sensitivity in my hands and arms and feel worse in the morning.
The Docs are telling me what WR is hearing, that the effects of any compression i.e. cord damage are most likely permanent as the cord is very difficult to heal once damaged, and that I should go for surgery on that basis alone, that is to halt the progression of the damage.
On the other hand, I haven't seen a shrink, but if it did, I would tell him that I do not think I am as "Bad Off" as other patients are. I'm not in as much pain as Debbie or Bruce were for example. The post-op is a burden on my family too. I am holding off because I don't want others to be put off on my behalf. God forbid if a surgical fluke occured and I was incapacitated, or died, it would also be an real burden on others...
BJ
BWL
04-06-2003, 10:28 AM
Hi BJ,
Your last statement is a big one that we don't often consider. While I have no family (i.e. wife, kids) I too had to consider the implications of a world without Bruce. I own a small business and was very concerned about the business and more specifically the wonderful people that work for me. I spent time the day before surgery with my attorney refining a new business continuity plan along with a revised will so that would be no misunderstandings as to my wishes and to ensure that everyone would still have a job. Don't misunderstand, I was confident of the outcome, but prudence dictated my planning.
Enjoy this beautiful day,
Bruce :)
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ACDF with plating and donor bone C6-7 (1/29/03)
Your last statement is a big one that we don't often consider. While I have no family (i.e. wife, kids) I too had to consider the implications of a world without Bruce. I own a small business and was very concerned about the business and more specifically the wonderful people that work for me. I spent time the day before surgery with my attorney refining a new business continuity plan along with a revised will so that would be no misunderstandings as to my wishes and to ensure that everyone would still have a job. Don't misunderstand, I was confident of the outcome, but prudence dictated my planning.
Enjoy this beautiful day,
Bruce :)
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ACDF with plating and donor bone C6-7 (1/29/03)
cotal
04-06-2003, 11:55 PM
y
[This message has been edited by cotal (edited 04-06-2003).]
[This message has been edited by cotal (edited 04-06-2003).]
cotal
04-06-2003, 11:56 PM
I've got a small business as well. My brother travelled in for a day of intensive "takeover" training so we could at least keep the books in order during the post-op recovery.
I've also updated my will, something we all tend to put off...
BJ
------------------
1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled
I've also updated my will, something we all tend to put off...
BJ
------------------
1993 C5-C6 compression noted in Xray
1995 Forearm soreness observed, attribute to RSI
1997 Jammed finger in Sports Accident, numbness never goes away
1998 numbness and parathesia in middle finger attribute to carpal tunnel syndrome
Carpal tunnel surgery ineffective
2000 Acupuncture, Acupressure, massage, PT, Yoga
2001 Neurologist orders MRI, diagnosis of cervical radiculopathy and spondylosis
2002 Conservative therapies continued, condition persists, 5 neurosurgeons consulted
2003 Artificial disc prosthesis considered and rejected, 2 level fusion scheduled