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Old 09-22-2009, 09:16 PM   #1
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C5/C6 disc herniation with forminal stenosis

Hello,
I've been posting about my condition since July. At the time I was diagnosed with a large broad based herniation at C5/C6 with severe forminal stenosis. Since then I have been resting, taking pain meds and then physical therapy. As of now, my pain level has reduced. I had a follow up meeting with my doctor today and we're observing no stength improvement in my left arm (I'm left handed) since my last appt. In fact I may have some degeneration and my left arm is now weaker than my right. The doctor is suggesting that I consider making a decision regarding surgery within the next 30 days since he's concerned if I do nothing I coulld have permanent nerve damage.

I was really hoping I could avoid surgery since I'm really afraid, as many of you are. I scheduled a 2nd opinion with another neurosurgeon that specializes in minimally invasive procedures and preservation of the disc. This may not be an option though because the herniation is large.

So my post here is a way of venting some of my anxiety about surgery and for any additional input from you. So far I've gotten a lot of great feedback from so many of you. It's really helped to point me in the right direction when looking for doctors, knowing what questions to ask, etc...

As many of you have pointed out, surgery is usually most successful when done sooner rather than later. And since my condition is not so bad now and I'm still somewhat fit, it might be better for me to proceed now since that will likely aid my recovery.

And those of you out there that have had surgery, please give more feedback on your succeses and what else I can do/ask to make sure this is best for me. I've researched the surgeons I've seen (and will be seeing), checked their schooling, experience, checked for legal actions with the attorney general and need to confirm their hospital affiliations. What am I missing?

I'm 43 and want to have a full productive life - right now I don't. I'm going back to work on Monday and will continue for as long as I can. I think the doctor is right and surgery is the best course of action - I'm just double/triple checking everything now...

Thanks for all your support so far- I'll be back for more

 
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Old 09-23-2009, 11:21 AM   #2
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Re: C5/C6 disc herniation with forminal stenosis

You have one big MISTAKE in your post...you are NOT doing better. The lessening of your pain may be related to the nerve starting to die further and your losing strength is a sign of worsening loss of function. I had NO pain when I had my first surgery. The worse it gets, the more the pain disappears. The nerve is so compressed it stops hurting as it slowly dies. And your strength will slowly go as well...and feeling.

Look at what I'm going through right now. It's my left arm as well. I waited too long. The nerve tried to come back but couldn't make it and part of the nerve has died. My joints are dissolving and I feel nothing. Sounds like the ideal situation...arthritis with no pain. But my joints are becoming useless and in order to keep the tendons and ligament and muscles viable, I'm looking at joint replacements or fusions from my fingertips to my neck.

Less pain in the face of less strength is a bad sign, not a good one.

You've done all the right stuff in finding a great surgeon. Now trust him to fix it before it's too late.

I just got the wake up call of my life and it's scary as hell. Don't do what I did.

gentle hugs...........Jenny

 
Old 09-23-2009, 09:51 PM   #3
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Re: C5/C6 disc herniation with forminal stenosis

I had very good luck with my ACDF performed by an Orthopedic Spine Surgeon. {Don't let the fact that I had surgery on my neck again worry you as I am an "orthopedic nightmare"}.

I felt 100% better when I woke up from the ACDF. First, since they go in the front of the neck the amount of actual surgical pain, for me, was minimal due to the fact they don't cut through much muscle. Second, the nerve pain and arm numbness was nearly gone upon awakening. Then I gained back feeling and strength in my affected arm. I did wait a bit too long so my pointer finger on my left hand is a little numb and will never recover but over all that's the only remaining affect.

I was soooooooo scared about the ACDF even after having had multiple other surgeries including my lumbar spine. So like you I did research and asked each doctor "how many of these do you do each month?". That, to me, is a very important question. Some neurosurgeons specialize in spine surgery and some in other areas like brain surgery. Now in many NS practices there is one doc that is the spine guy - so make sure you are getting that NS.

As I said I had mine done by an Orthopedic Spine Surgeon - his practice (3 in the practice) do ONLY spine surgery so no elbows, knees, or anything else. And he came highly recommended. It may be an information way to judge but I felt better in the waiting room seeing all of the jerseys from pro athletes and articles on the walls about their practice.
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Rt thumb fusion '13. R&L thumb arthroplasty '12 ; RT TKR & Bilat CTS' 11. Fusions: L5-S1('87), L4-S1('93), C5-C7('06), L3-S1('10), C4-C5('13). C5-C7 foraminotomy '08

 
Old 09-24-2009, 02:07 PM   #4
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Re: C5/C6 disc herniation with forminal stenosis

Hi Jenny - Yes - I understand that since I have no pain that means my nerve may be dying. I was just hoping that the PT would work and I could go back to my life without surgery. But now my eyes have opened and I know what I'm going to need to do. For my comfort I need to see a couple more surgeons and get 2nd and 3rd opinions before I got for it. This whole thing came at me so fast - started on 7/21/09. So for the first month I was doing mostly rest and taking pain meds. When the pain subsided I went to PT the 2nd month. So now I'm here in the 3rd month consulting 2nd and 3rd surgeons.

But I am happy to go back to work in the meantime, even though I'll need to go back out.

Believe me, you'll be hearing more from me on my condition... Take care of yourself.

Robin

 
Old 09-29-2009, 06:27 PM   #5
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How to pick a surgeon?

Hello all,
As always, I'm looking for your wise advise as I journey this road into spinal surgery.

I have a 2nd opinion scheduled with a neurosurgeon next week. He's procedures are performed in Hackensack University Hospital in NJ. I looked up his educational backround as well as some other sites where patients can post their feedback and he looks like a good candidate.

My 3rd opinion is with a dr Chun at Summit Medical Center in Berkely Heights NJ and he performs his surgeries at Morristown Memorial Hospital in NJ. He is recommended for his experience in minimally invasive sugery, however I've read he doesn't have a great bedside manner.

My first surgeon was great during my appointmenbt and he dod not leave until he answered all of my questions - and I really had a lot. His education is from a top school and he has a lot of experience with cervical spinal surgeries.

So my question of the day is education vs experience vs hospital? I'm trying to get a candidate with all 3, but it's a tall order and it seems I'm falling short. Any advice or comments into this matter is appreciated.

Thanks,
Robin

 
Old 09-29-2009, 07:23 PM   #6
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Re: C5/C6 disc herniation with forminal stenosis

Hey Robin...I was born in Orange, NJ and grew up in Chatham. Sounds like you're in the area.

I'd go with experience. The surgery is what is crucial. One slip of the scalpel and you'll be in trouble. You want a doc who does this every week if not multiple times a week. My surgeon is in the operating room 4 days a week. Makes him hard to see but he is good.

So I'd vote for experience as the #1 factor. #2 would be the hospital...they need to know how to care for a spine patient.

Education is last. Lots of bad docs went to great schools but they just don't care enough to do a good job.....they may be in it for the money...met a few of those. And even bedside manner isn't a big deal to me. I want a doc who is so busy helping people that he doesn't have time to sit and chat.

If you still aren't convinced, try the Hospital for Special Surgery in NYC. I saw and liked Dr. Sama but he felt I would be better off with the doc in Boston...more experienced in the problems I had. I respect honesty and he was honest.

I'll know more about the damage to the nerves in my arm on Thursday so I'll let everyone know then.

gentle hugs..............Jenny

 
Old 09-29-2009, 10:25 PM   #7
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Re: C5/C6 disc herniation with forminal stenosis

I look for a balance of all 3. I had a very experienced surgeon do my cervical surgeries but when my lumbar spine started getting bad he seemed dis-interested. So I found an experienced surgeon, who has a new young associate, and who really listens to what I say and the symptoms I express. I agree that "bedside" manner is important - because that's where the "real listening" comes into play. I want the surgeon to be on my agenda...not on his/her own.
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Rt thumb fusion '13. R&L thumb arthroplasty '12 ; RT TKR & Bilat CTS' 11. Fusions: L5-S1('87), L4-S1('93), C5-C7('06), L3-S1('10), C4-C5('13). C5-C7 foraminotomy '08

 
Old 09-30-2009, 05:24 PM   #8
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Re: C5/C6 disc herniation with forminal stenosis

Hello former neighbor - looks like you got out of Jersey in the nick of time. But those comments are for another board.

Thanks for your feedback on the surgeon and center. My issue is that if I select a doctor outside of my network in NJ I have to pay the entire bill. Now I know you don't want to mess around with your spine, but I'm trying to see if I can find everything I want in NJ - Tall order - huh...

In the meantime, I'll look into this doctor and medical center and see if I can get in to see him for a consultation. However, if I go with him it will have to wait until after the New Yers, when changes to my insurance plan go into effect. So if you know of good hospitals in NJ or surgeons, please let me know. I heard that Robert Woods Johnson in New Brunswick has a top notch neurological unit and tried to schedule an appointment with a surgeon affiliated with that hospital. His first available appointment is in December.

Thanks for all your feedback and keep it coming. I need all the support I can get.

Robin

 
Old 10-03-2009, 09:02 AM   #9
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Re: C5/C6 disc herniation with forminal stenosis

Hello again - It appears I was wrong about my insurance coverage and there are no restrictions to my plan that I'm required to use NJ doctors and hospitals. This is great news because I am looking into the Center for Specials Surgeries in NYC where they specialize in conditions involving spines, joints, etc... So I picked a doctor based upon his specialization and will try to get in and see him as soon as possible. Which leads me to my next question... I note that their surgeons are Orthopredic Spine Specialists and not neurosurgeons, althought they specialize in the same conditions. Is there any benefit to using one versus the other? My impression is if the surgeon has the requisite epxerience on your particular type of procedure and condition, then it shouldn't make a difference. Any thoughts?

 
Old 10-03-2009, 10:13 AM   #10
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Re: C5/C6 disc herniation with forminal stenosis

I have used an orthopedic spine surgeon for all of my spinal surgeries. In each case all they did was spine work and that was their area of expertise. So an OSS or a NS are both good choices.
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Rt thumb fusion '13. R&L thumb arthroplasty '12 ; RT TKR & Bilat CTS' 11. Fusions: L5-S1('87), L4-S1('93), C5-C7('06), L3-S1('10), C4-C5('13). C5-C7 foraminotomy '08

 
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