finally met with neurosurgeon

Posted by birdman518 @birdman518, Nov 11, 2021

I will try to keep this short. After having my nerve testing done by my neurologist (EMG, CT without contrast), who then referred me to a neurosurgeon, I met today to go over the results from the myelogram (with contrast) I had about 2 weeks ago.

My worst disk issue is *not* C5-C6, as I thought (from my arm and hand numbness and pain, esp. my thumb and index finger), but C3-C4. This is the only place where there is compression of the disc against the spinal cord. There is some moderate stenosis in C5-C6, which means that there are potentially 3 places where I could have a cervical spine infusion. We discussed the option ("moderate") of doing only C3-C4, but given my symptoms we could end up going back later. The "aggressive" option would be to do all 3. NOTE: HE DID NOT PRESSURE ME TO DO ANY OF THESE.

We did discuss other options such as PT, acupuncture, shots et al, but because of the imaging he did not think these would provide anything but temporary relief and not fix the root cause.

We discussed in some detail what the surgery would involve and what the recovery would be, as well as potential complications. He actually spent at least an hour!

I would certainly like to hear what people think. I have been living
with this arm/hand pain and numbness for about 3 years. I do not want
this to continue to become a permanent disability..I already have difficulty
picking things up and even holding a pen.

Thanks!

Interested in more discussions like this? Go to the Spine Health group.

I probably forgot lots of stuff. He proposes using titanium plates with some type of cadaver bone "wrapper" (?) to facilitate bone regrowth.

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I've had 3 spinal fusion surgeries and only as a last resort. I tried everything from cortisone injections to PT. Opiates are not a solution for me since they all make me deathly ill. Surgery should be your last resort. Even though I didn't find relief from everything else I tried, I'm glad I tried it all first. At least, I know there wasn't anything else out there. Please keep us posted on your decision and progress. Oh, and I have the "cage" and cadaver bone – probably SOP.

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@birdman518 It must feel good to have some answers. With spinal cord compression at C3, this can generate other symptoms in your body, so it may be related to your arm pain, but there are no tests that would confirm it. When you have stenosis in the foramen at the nerve roots, that produces specific pain where those nerves go and that will follow a dermatome map. I had pain all over my body from spinal cord compression at C5/C6, and I did not have nerve root compression. My stenosis was labeled "moderate" and that was enough to cause an uneven gait, muscle spasms in my legs, tingling and numbness, and I was loosing coordination in my arms. I lost some muscle due to atrophy and not all came back, even though my MRI did not show spinal cord damage. Mild myelopathy may not show on the MRI. Trust your gut about your symptoms. I knew that my all over pain was caused by the cord compression because I had tracked my symptoms over time, and for a while, I could turn pain on and off simply by turning my head or bending my neck. My surgeon couldn't promise that the surgery would fix my pain, but it did.

A good surgeon does not pressure a patient for a decision, and will help the patient make an informed decision by explaining the risks and benefits, so it is good your surgeon took time and did this. One question I would ask would be about the materials in the implants and if there are different choices on hardware or no hardware. I was worried about foreign materials, and my surgeon told me that a fusion heals best with just a bone graft. A metal plate on the front on the spine ads stability and gives the surgeon some peace of mind, but it is not always necessary. Before plates were invented, a patient just stayed in a hard collar until fused. I made that choice and did that because I had some concerns about a potential immune reactions to metals because I developed problems wearing pierced earrings. There are lots of implants that screw in at an angle so no anterior plate is needed. If an immune reaction happens, it may not be possible to remove a "cage" that has bone fused around it. My hunch turned out to be right because after I broke my ankle, I could not avoid having titanium plates and screws, and I developed chronic hives and pain a few months after the surgery. Another issue was that after having metal placed in my body, my asthma got worse and I had trouble getting my lungs clear. I made the decision to remove the ankle hardware a couple months ago, and my health improved and my breathing improved again. That may not be an issue for you. I am glad that I chose a fusion with no hardware and I was in a neck brace for 3 months by choice. Bone also has a very slight bit of flexion to it and when you screw rigid hardware to it, that changes. Plate length can also influence adjacent segment disease. The longer the plate, the greater the risk and if it is too long, it can rub on an adjacent disc. A bone graft fusion shrinks a little bit as a fusion heals. Perhaps that is the reason your surgeon suggested a metal cage, but that might be something to ask questions about.

You may want another opinion. Surgeons have different choices in spine hardware and tend to use the companies that they are familiar with, so you may get a different option with another surgeon. I wasn't really clear about which 3 levels you mentioned as you mentioned C3/C4 and C5/C6. You have been living with symptoms a long time, and things can always get worse. Did your surgeon explain how things would progress without surgery? My opinion really doesn't matter, what matters is what you think is the right path for you.

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@vicky9

I've had 3 spinal fusion surgeries and only as a last resort. I tried everything from cortisone injections to PT. Opiates are not a solution for me since they all make me deathly ill. Surgery should be your last resort. Even though I didn't find relief from everything else I tried, I'm glad I tried it all first. At least, I know there wasn't anything else out there. Please keep us posted on your decision and progress. Oh, and I have the "cage" and cadaver bone – probably SOP.

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@vicky9 Thanks for sharing.. I have related in other posts some of the things I have tried, including neuromuscular massage and PT. Believe me, I don't take surgery lightly!

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@jenniferhunter

@birdman518 It must feel good to have some answers. With spinal cord compression at C3, this can generate other symptoms in your body, so it may be related to your arm pain, but there are no tests that would confirm it. When you have stenosis in the foramen at the nerve roots, that produces specific pain where those nerves go and that will follow a dermatome map. I had pain all over my body from spinal cord compression at C5/C6, and I did not have nerve root compression. My stenosis was labeled "moderate" and that was enough to cause an uneven gait, muscle spasms in my legs, tingling and numbness, and I was loosing coordination in my arms. I lost some muscle due to atrophy and not all came back, even though my MRI did not show spinal cord damage. Mild myelopathy may not show on the MRI. Trust your gut about your symptoms. I knew that my all over pain was caused by the cord compression because I had tracked my symptoms over time, and for a while, I could turn pain on and off simply by turning my head or bending my neck. My surgeon couldn't promise that the surgery would fix my pain, but it did.

A good surgeon does not pressure a patient for a decision, and will help the patient make an informed decision by explaining the risks and benefits, so it is good your surgeon took time and did this. One question I would ask would be about the materials in the implants and if there are different choices on hardware or no hardware. I was worried about foreign materials, and my surgeon told me that a fusion heals best with just a bone graft. A metal plate on the front on the spine ads stability and gives the surgeon some peace of mind, but it is not always necessary. Before plates were invented, a patient just stayed in a hard collar until fused. I made that choice and did that because I had some concerns about a potential immune reactions to metals because I developed problems wearing pierced earrings. There are lots of implants that screw in at an angle so no anterior plate is needed. If an immune reaction happens, it may not be possible to remove a "cage" that has bone fused around it. My hunch turned out to be right because after I broke my ankle, I could not avoid having titanium plates and screws, and I developed chronic hives and pain a few months after the surgery. Another issue was that after having metal placed in my body, my asthma got worse and I had trouble getting my lungs clear. I made the decision to remove the ankle hardware a couple months ago, and my health improved and my breathing improved again. That may not be an issue for you. I am glad that I chose a fusion with no hardware and I was in a neck brace for 3 months by choice. Bone also has a very slight bit of flexion to it and when you screw rigid hardware to it, that changes. Plate length can also influence adjacent segment disease. The longer the plate, the greater the risk and if it is too long, it can rub on an adjacent disc. A bone graft fusion shrinks a little bit as a fusion heals. Perhaps that is the reason your surgeon suggested a metal cage, but that might be something to ask questions about.

You may want another opinion. Surgeons have different choices in spine hardware and tend to use the companies that they are familiar with, so you may get a different option with another surgeon. I wasn't really clear about which 3 levels you mentioned as you mentioned C3/C4 and C5/C6. You have been living with symptoms a long time, and things can always get worse. Did your surgeon explain how things would progress without surgery? My opinion really doesn't matter, what matters is what you think is the right path for you.

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Jennifer.. thanks again for everything you do here. Since my wife had a laminectomy done over 20 years ago with her own (hip) bone, I am somewhat familiar with that. She said her hip was the worst part! I will ask about the titanium. And yesterday I did set up a 2nd opinion with another local spine surgeon, who was highly recommended by a friend of a friend. It will be Dec. 9. I expect that one way or the other I will make a decision about what I am going to do by mid-Dec.
I will certainly keep this community informed. Thanks again!

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@birdman518

Jennifer.. thanks again for everything you do here. Since my wife had a laminectomy done over 20 years ago with her own (hip) bone, I am somewhat familiar with that. She said her hip was the worst part! I will ask about the titanium. And yesterday I did set up a 2nd opinion with another local spine surgeon, who was highly recommended by a friend of a friend. It will be Dec. 9. I expect that one way or the other I will make a decision about what I am going to do by mid-Dec.
I will certainly keep this community informed. Thanks again!

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Good evening @birdman518 and @jenniferhunter It appears that you two are laying all the cards on the table. I don't want to interfere. I just want you to let your wife know that I agree with her remarks. I had a laminectomy many, many years ago for which my own hip bone was used for the fusion. This is the first time I have heard about anyone else having that type of surgery. Unfortunately, I agree with her. My hip was and continues to be the "worst part". I must admit I was surprised that the patient's bone was still being used for this surgery.

Whatever you decide @birdman518, I hope for the very best outcome. You have a strong ally in Jennifer.

May you be free of suffering and the causes of suffering.
Chris

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@artscaping

Good evening @birdman518 and @jenniferhunter It appears that you two are laying all the cards on the table. I don't want to interfere. I just want you to let your wife know that I agree with her remarks. I had a laminectomy many, many years ago for which my own hip bone was used for the fusion. This is the first time I have heard about anyone else having that type of surgery. Unfortunately, I agree with her. My hip was and continues to be the "worst part". I must admit I was surprised that the patient's bone was still being used for this surgery.

Whatever you decide @birdman518, I hope for the very best outcome. You have a strong ally in Jennifer.

May you be free of suffering and the causes of suffering.
Chris

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@birdman518 I chose to have a donor bone graft for my spinal fusion because if they had used my hip bone, my surgeon said I could have pain there the rest of my life. I didn't want that and I think that could affect my balance when I am elderly. I also know that every surgical site creates scar tissue, and scar tissue in the fascia. That is something I always work on. My neck was already tight because of thoracic outlet syndrome and putting an incision on the front of my neck from spine surgery added tightness, so I keep stretching to keep that from getting tighter. Doing myofascial release before and after surgery helped keep my muscles looser, so they were easier to retract during surgery. I asked my surgeon what I could do to help make it easier for him and he showed me how to use my hand to stretch my neck on the side for the incision… basically doing MFR. After surgery, MFR helped reduce pain and get my neck moving normally again. I have only one fused level lower down, so that does not affect my ability to turn my head. Other patients will have a different experience based on how much their movement changes because of spine surgery. The donor bone is milled to a specific size and it had a space inside so they could seed it with the bone spurs that were removed during surgery. It is really just the matrix because all the bone building cells have been cleaned from it, so it provides a scaffold that your body can use to fill in with new bone cells. The bone cells create the matrix and deposit minerals into it. That's a simplified explanation. There actually are also a different kind of bone cell that reabsorbs bone, while the others lay down new bone. That's why the bone graft disc can shrink a little bit, but they factor that in when they manufacture it. I had lost height because of my 50% collapsed disc and I got back my height after I got the bone disc replacement. My surgeon recommended against using my hip bone. Donor bone is used frequently and completely sterilized during the manufacturing process. I will be interested to hear what your second consult advises.

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My appt with 2nd opinion spine surgeon is Dec 9. I will definitely post what he recommends.

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Is this appointment at Mayo? If yes, how long did you wait for the appointment?
I was just told there was a waiting list over a year long. I am rapidly declining and could be seriously crippled or dead by the time I see someone! The healthcare system is failing me.

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@msg

Is this appointment at Mayo? If yes, how long did you wait for the appointment?
I was just told there was a waiting list over a year long. I am rapidly declining and could be seriously crippled or dead by the time I see someone! The healthcare system is failing me.

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@msg From my conversations with Birdman, he indicated his appointments were in his local area and not at Mayo. I did have spine surgery at Mayo, and at the time I inquired 5 years ago, I was told the wait for a neurosurgery consult was 3 months after sending in imaging for review. In my case, there was a cancellation and I was seen sooner. The wait for appointments will be different in different departments based on demand and availability with higher priority given to patients with more urgent medical needs as stated on the website. You can always call Mayo and ask the department that matches your needs for information on how to seek an appointment. Can you share more information about the health issues that concern you?

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

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Yesterday I had my 2nd opinion with an orthopedic spine surgeon. He had reviewed my myelogram images and showed me how my problem was not just radiculopathy (although that is definitely present), but myelopathy. IOW, my spinal cord is being compressed. These two facts, I believe, account for almost all of my symptoms (pain, numbness, tingling, gait/coordination problems). Previously I was told that my biggest issue was C3-C4, which did not necessarily correspond to my hand and finger (thumb and index) numbness (usually attributed to C5-C6).

He indicated that I have some ossification of one of the ligaments: Ossification of the posterior longitudinal ligament of the spine (OPLL). I would love to hear what people know about that.

The other good news is that both his diagnosis and proffered remedy matched the other doctor's: triple ACDF for C3-C6. I am 99% sure that I will be going forward with this after getting clearance from PCP and Cardiologist.

I want to thank all of you who have responded to my other posts, especially Amanda and Jennifer…
Oh, my PCP prescribed Celebrex for me the other day (3 days ago) to see if it would help at all. So far I don't see it being better than plain Ibuprofen.

Mitch

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@birdman518

Yesterday I had my 2nd opinion with an orthopedic spine surgeon. He had reviewed my myelogram images and showed me how my problem was not just radiculopathy (although that is definitely present), but myelopathy. IOW, my spinal cord is being compressed. These two facts, I believe, account for almost all of my symptoms (pain, numbness, tingling, gait/coordination problems). Previously I was told that my biggest issue was C3-C4, which did not necessarily correspond to my hand and finger (thumb and index) numbness (usually attributed to C5-C6).

He indicated that I have some ossification of one of the ligaments: Ossification of the posterior longitudinal ligament of the spine (OPLL). I would love to hear what people know about that.

The other good news is that both his diagnosis and proffered remedy matched the other doctor's: triple ACDF for C3-C6. I am 99% sure that I will be going forward with this after getting clearance from PCP and Cardiologist.

I want to thank all of you who have responded to my other posts, especially Amanda and Jennifer…
Oh, my PCP prescribed Celebrex for me the other day (3 days ago) to see if it would help at all. So far I don't see it being better than plain Ibuprofen.

Mitch

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@birdman518 I moved this post back into the original discussion to allow for those who joined you to get this update as a notification if they have them turned on.

@jenniferhunter will, no doubt, be glad to hear this update as well. Wishing you all the best and look forward to continued updates!

When are you hoping to proceed to the next step?

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