Spine fusion for leg pain

Posted by asilyag @asilyag, Aug 19, 2023

I visited a neurosurgeon in February 2023 to consult him about my right side radiculopathy. He wanted to schedule spinal fusion. H/o a bone fragment removed from L5-S1 15 years ago. Had discomfort in my right hip/leg for years after that sx but nothing debilitating. Started having difficulty sleeping five years ago. Taken gabapentin since September 2022 stopped gabapentin (big mistake I would soon realize). I was having terrible GERD symptoms and was trying to alleviate anything in my stomach that may be causing irritation. At the same time became much busier at work. I’m an RN. Census doubled I was on my feet for hours. My pain was so intense I had to be off on leave. Fast forward past PT, one spinal injection. Referred to neuro. He was callous and made the procedure sound gruesome so I hesitated. Big deal to me having spinal fusion. I waited until yesterday to go back and tell him I was ready to get rid of the constant pain and have the procedure. He said I waited too long. Only small chance that it would help me now. He was still very abrupt and I was so disappointed. I certainly don’t want surgery but I was under the impression I needed it to get better. He even told me at the initial visit to have it at 58 y/o was better than 68. I’m still reeling from his complete turn around. Acted as if he’s pissed because I waited six months. Help me!

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@jenniferhunter

@asilyag I'm sorry you had a bad experience with surgeon #1, and I agree, he is not worth your time or your dime. I was rejected by 5 surgeons before I came to Mayo Rochester and I had surgery there. I was loosing the ability to control my arms, and I'm an artist, and was very worried. That was 2 years of seeking help only to be denied, so 6 months for you isn't going to be substantial. I wish I had come to Mayo first and not wasted my time. My diagnosis was confusing because of unusual symptoms and they just didn't understand. I had spinal cord compression in the central canal at C5/C6 and it caused pain all over my body. If you were in an emergency situation, that's different, and often there is a wait of 2-3 months for a consult with a good surgeon. If you want compassionate care and excellence in talent, going to Mayo is a good choice. I can't speak highly enough of my neurosurgeon, Jeremy Fogelson, and he was kind. In Ohio, you also have Cleveland Clinic and that is a good place too. You need other opinions, and with lower spine surgery several opinions are preferable because recovery is more difficult with bearing most of your body weight there and you need a good surgeon to get it right. I'm sure you know that being a nurse. Do you know what your spine diagnosis is now and what sub-specialty of a spine surgeon would be a good fit?

My story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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As someone who loves to draw, I think your story is so awesome! Your painting is beautiful, and I can imagine how excited you must have been as you made it! I made a celebratory drawing after my surgery, too, and I wasn't even in danger of losing my ability to do art. To say goodbye to that and then get it back... wow, I'm so happy for you.

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@westcom

Yes to all the comments that urge you to get second, third and however many opinions you need. I’m 75 and had multi- level laminectomies and a L4-L5 fusion 10 months ago. I have recovered well and even returned to playing golf 2x/week. Finding a neuro or Ortho spine specialist you trust is key to recover. I got three opinions before deciding on a neurosurgeon who was genuinely caring and listened to me. Not all neurosurgeons are callous and cold or want to right to major spine surgery. There are many minimally invasive procedures today that can help. Unfortunately for me they were not appropriate. I wish you luck in finding a doctor who is honest and caring.

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Thank you! Good to hear you’re well and able to play golf. You have had many more surgeries than I ever hope to have.

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@geekygirl9

As someone who loves to draw, I think your story is so awesome! Your painting is beautiful, and I can imagine how excited you must have been as you made it! I made a celebratory drawing after my surgery, too, and I wasn't even in danger of losing my ability to do art. To say goodbye to that and then get it back... wow, I'm so happy for you.

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@geekygirl9 Thank you. I'm glad you love to draw too! Isn't that wonderful?

It was very emotional for me painting my surgeon after he fixed my spine and I did cry some while I was painting. At that time, I was 11 months post op and getting this done so I could show it to him at my one year follow up appointment. At the time, I could paint for about 2-3 hours max, and then I had to lay down and sleep for a few hours and then try to paint another session for a few hours. It takes a lot of time to rebuild muscle and I had lost muscle in my shoulders because of the spinal cord compression, so I fatigued a lot.

The unveiling was fun too. I hid it behind the curtain in the dressing area of the exam room until we had finished the medical part of the appointment. His nurse had scheduled some extra time for this. You can see some pictures from the unveiling in this discussion "Art for Healing". This Art for Healing discussion is all about how art helps patients reduce stress and be a healing environment. I was using my own artwork for that purpose and for my benefit. If you wish to post some of your drawings or creative works, you may do that in the Art for Healing discussion.

Just Want to Talk - Art for Healing
https://connect.mayoclinic.org/comment/221703/
I also recorded video of myself painting the portrait and you can see that in the link that I will share here. Healing isn't just the physical part. It's also the emotional part of having faced something difficult and finding out that you can call on your inner strength when you need to do that. You don't really know what you've got inside until it is tested.

"A Gift for my Surgeon"

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@gently

RNing is hard on your spine.

There are too many neuros to go back to Dr Callous. It is a big deal having spinal fusion. It can provide great relief.
But, there are artificial discs.
Was the bone fragment from the vertebrae of the sacrum, the result of impact or osteoporosis.
You may want help from a drug like Forteo. It helps secure any hardware and promotes healing. Lots of surgeons prescribe it for a few months before surgery and a period of time after.
Get consults with orthopedic surgeons or other neurosurgeons Some will consult free if you send your MRI. Your insurance should cover second opinions.
And there are lots of gentle surgeons. Anyone can have a bad day. Sometimes we don't realize that the person is having a heart attack or midlife crisis, sometimes it is a new cancer diagnosis or a fight with the wife, bad news from the stockbrocker.
It may be years before he gets over it. Don't schedule with him.
Keep us posted!

If the epidural? helped, you might get another to get you through to the surgery.

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Hello @gently. You will notice that I have edited the post I am replying to in order to remove the part where you stated that artificial discs have a better success rate than fusions. I did so because the recommendation of which option a neurosurgeon may present to someone should be highly personalized and based on each patient's circumstances with regard to which option will have a better success rate for that person specifically. It is important for patients to seek a personalized evaluation to know what option looks to be the best.

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Absolutely get a second and third opinion. There are doctors out there that will explain things to you and not berate you. You deserve that. Spine problems and potential fusion surgery is not to be taken lightly. Put that doctor and the rear view mirror and start over!

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@geekygirl9

Hi @asilyag , I'm very sorry to hear about your leg pain and really hope you are able to find relief soon and get your life back on track. Urgency like that is awful but it's totally understandable that you don't want to rush into surgery, and if you do get it, I really don't think this surgeon is the one for you. That must be scary to feel like maybe it'll be too late unless you act now, but I'm not sure I'd trust any doctor with my spine unless I first knew he really cared; I think that can sometimes be just as important as expertise. I don't know where you're at or if radiculopathy is one of his specialties or not, but I know that Dr. Jamal McClendon at Mayo AZ does spinal fusions (I had mine from him for my scoliosis and must admit I've got a slight case of hero worship). The thought of spinal fusion upset my stomach, but I agreed to have it because I felt like he was being honest with me, knew what he was doing, and would do the best job he could for me. It's been a couple years and so far I'm happy with the results. Good doctors are out there; I hope you find the right one for you soon and are able to get your pain solved once and for all.
Hugs & prayers

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@geekygirl9 I am scheduled for spinal fusion with Dr McClendon in a few weeks and already feel the same way about him as you described! I tried to message you but can’t seem to find that option.
How many vertebrae were in your fusion?

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@amandajro

Hello @gently. You will notice that I have edited the post I am replying to in order to remove the part where you stated that artificial discs have a better success rate than fusions. I did so because the recommendation of which option a neurosurgeon may present to someone should be highly personalized and based on each patient's circumstances with regard to which option will have a better success rate for that person specifically. It is important for patients to seek a personalized evaluation to know what option looks to be the best.

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@amandajro
I'm only seeing this a year plus later, but I'm happy to have my posts deleted. I often feel that in replying to one person specifically there may be misinterpretation by another. I'd like all of my old posts removed.
If I recall correctly this poster was considering cervical disc fusion. Success rates in for cervical TDR are the best of all segments meaning Lumbar or Thoracic.
While I disagree with your premise, because a single person's success or failure cannot give you a "rate." I'm fine with a deletion of the post. My suggestion that this particular cervical patient consider TDR is not intended to and could not effect a substitute personalized evaluation.

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