Surgery 2 years ago

Good afternoon. My first post so bear with me. I’ve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months I’ve been in excruciating pain! I can’t stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear it’s the rods broken again. Again? I don’t know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. I’ve gone down the pity road many times! Why me! Anyone have their rods break more than once?

Rita

I'm in shock.....why didn't you post? its been around 7 years....

I remember your huge curve, Dr Lenke did your initial surgery, and you were good a year after. What did he say 2 years ago when your rods broke?

Your the 2nd one here lately that broke rods many years (7) after initial fusion.

I am so sorry about all of this....

Ed

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Originally Posted by RitaR

Anyone have their rods break more than once?

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FLT, Fierce like Tiger broke her rods twice at age 25. She wasn't fusing. She finally went to Twin Cities Scoliosis Center since she lived in Iowa and they fixed her up. I remember specifically since she mentioned that her surgeon told her that you just don't slap BMP on and expect it to work. BMP is only "on label" or FDA approved for ALIF otherwise, its off label for scoliosis surgery. I had a BMP ALIF procedure so I remember these things.

Again, a lot of years has passed since she was done. I hope she is ok.

Ed

hours for sx. He said he was very scared by the amount of blood I lost. I spent 3 days in icu after sx. Recovery went very slow. I always had a lot of pain it seemed. Then a few months ago I started having horrible pain. It’s been ever increasing ever since to the point of tears at times. I called St. Louis and they gave me arch appt time. I’m not sure I can make it that long. Pain is horrible!

Rita,

If it gets out of control, go to the hospital. I suppose they will knock you out with an injectable for a pain break.

Can you arrange to see a pain specialist next week? Have you tried a Fentanyl Patch?

Ed

I’ve tried otc patches but not Fentanyl. I’m going to call Dr Lenke tomorrow and see if he will see me. I really liked him. I just can’t imagine having sx in NY, ie how to get home. But, worry about that then I guess. I have to do something!

Fentanyl is powerful stuff.....That's why they put it in a patch.

Why didn't you let Dr Lenke know 2 years ago before your rods were removed? Was it because he moved to New York?

Ed

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Originally Posted by titaniumed

Fentanyl is powerful stuff.....That's why they put it in a patch.

Why didn't you let Dr Lenke know 2 years ago before your rods were removed? Was it because he moved to New York?

Ed

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Yes, I didn’t relish the idea of traveling to NY, expensive trip. And, then you’d have to go back for the surgery. And, not to mention, after surgery how do u get home when u can barely walk.

I’ve had a couple incidences where the pain is sooo bad that it’s almost like a lung deflates. Is that even possible? If a rod is broken can it impinge on a lung? Because at that particular time it took my breath away! I’m not one to whine, but this is worst pain I’ve ever had!

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Originally Posted by RitaR

Yes, I didn’t relish the idea of traveling to NY, expensive trip. And, then you’d have to go back for the surgery. And, not to mention, after surgery how do u get home when u can barely walk.

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I see.....Surgeries are not cheap. But you should or should have let him know. I would consider him your surgeon and they do need to know about our complications regardless of time frame, and location. He could have assisted your local surgeon without traveling.

The past is the past....

Ed

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Originally Posted by RitaR

I’ve had a couple incidences where the pain is sooo bad that it’s almost like a lung deflates. Is that even possible? If a rod is broken can it impinge on a lung? Because at that particular time it took my breath away! I’m not one to whine, but this is worst pain I’ve ever had!

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Rita, If this is happening, I would see your GP or a local doctor tomorrow. Breathing is serious. Your GP should take you right away or refer you right away. Tell them its extreme lung related pain events.

This could be a non-scoliosis related lung problem, and they can see a lot with just a simple x-ray.

"Extreme pain" is an indicator that something is seriously wrong. Pulmonary complications kill people.

Self diagnosis is fruitless.

Ed

I tried calling Dr Lenke office but it was closed today due to holiday. I called dr Guptas office and left a message to see if they can move my appt up at all. I’m hopeful they’ll get back with me tomorrow. I did not sleep well last night at all.so much pain! I will keep u posted when I hear from them tomorrow. Thank you for your concern. If I don’t hear by noon I will be calling them tomorrow. It’s certainly not good the degree f pain I’m in.

Rita, right now, this is a local problem. Dr Lenke's office will tell you to deal with it locally. I would wait till this emergency is over.

If you call Dr Gupta's office, don't leave anymore messages, call until you talk with someone, tell them you are having elevated lung related pains and are having problems dealing with it, you need to see someone quickly, today. now. You have to be assertive on the phone. Don't you have his nurses or assistant's phone number? This establishing of contact, communication method is important.

Your not flu or cold sick are you? Its been colder than Antarctica in your neck of the woods lately.

Ed

I took you all’s advice and called Dr Lenke’s NY office today. I’m getting X-rays done ASAP and sending to him and I’m set up with tentative appt to see him on Apr 4th in his NY office. But he’s gonna call me once he’s looked at the xrays. Then we’ll know what’s what andgo from there. I’m calling about my xraystomorrow. I appreciate all your help and i will keep u posted.

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Originally Posted by RitaR

Good afternoon. My first post so bear with me. I’ve had surgery 2 years ago from top of neck to end of spine rods and screws. Surgery 2 years ago was to take broken rods out and put in all new. What an ordeal! Again! Over the past few months I’ve been in excruciating pain! I can’t stand but only for a few minutes. I have excruciating pain in one shoulder blade, down low and mid back. Sometimes to the point of tears because I fear it’s the rods broken again. Again? I don’t know if I can go thru this surgery again! I cannot bear that thought!!! My reg dr gave me hydrocodone and muscle relaxer until I see my surgeon in March. I’ve gone down the pity road many times! Why me! Anyone have their rods break more than once?

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Hi,

I too had surgery with Dr. Lenke, 16 maths ago.- Oct 2017. I am also in relentless pain and think my pain is coming from the hardware. I am considering having all of my hardware removed. Is this something you have ever considered? All of my test show that nothing is wrong but I do not want to live with this type of pain.

Lisa