Surgery 2 years ago

[Ldwc]

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

Hi Ed,

I am new on here and cannot figure out how to post a new thread. I had surgery 16 mths ago with Dr. Lenke. I am having horrible pain and all of my tests are showing that things are fine. I feel that my pain is coming from the hardware. Do you know anyone who has had their hardware removed, completely? and who they used to remove it? I am discussing this with Dr. Lenke as well. I cannot live like this without exploring all options.

Thanks for you help.

Lisa

[titaniumed]

Real simple Lisa

Go to main page, select Forum (Up at the top)

Click on Surgical (revision) Adult patients 18+

Click on Post new Thread

================================================== =====================================

Rita had all her hardware removed and you can see how she is doing. There are not many "full" hardware removal testimonials since I have been reading here over 14 years. Partial rod sections and screws, yes, full, no.

If I were in your position, I would go to Hospital for Special Surgery and see what they say. (Dr Schwab) I would get a 2nd opinion at a main scoliosis center.
https://www.hss.edu/

HSS has a orthopedic excellence record that goes back to the Civil War. Possibly the best in Orthopedics in the world.

There is also Dr Errico and Dr Lonner....Both are highly respected scoliosis surgeons.

I would be extremely hesitant removing "All" my hardware unless there is a rejection or infection. If they can rule out the specific area by doing shots, then proceed by removing a screw if that's the problem. I would want to try to find the problem area and put a LOT of effort into it. You can also have a non-scoliosis related pain coming from somewhere else that has not been discovered yet.

Here is a study on progression after hardware removal (Age 10-21) Please realize the age on this one.
Loss of correction was 23 degrees. Larger loss with infection.
https://www.researchgate.net/publica..._Spinal_Fusion

Only 40% reported relief.

How old are you and where are you located?

Ed

[RitaR]

Hi there. So..im still in dying pain. Tears sometimes and i have a high pain tolerance. Went to NY saw Dr Lenke and he said to us in person he could see why im in so much pain. Said he would take care of me. Then 2 weeks later his nurse calls and said Dr Lenke didnt have anything to offer me and that was that! I was shocked! Here we haf own all the way up therw..got the bone scan and ct scan he wanted then he says he has nothing for me. WHAT? and his nurse couldnt get off the phone fast enough. What am i suppsed to do, i asked her. She said, thats all he saud, ok? Ummmm...no! Cannot believe this circus!

[RitaR]

Ed, where are the drs you mention above? I cannot do anything or im in horrible pain. At times, i can barely walk at work. Then, i wind bbn up going home to bed. Im nearly to end of my rope!

Thanks.

[RitaR]

Ed, where are the drs you mention above? I cannot do anything or im in horrible pain. At times, i can barely walk at work. Then, i wind up going home to bed. Im nearly to end of my rope!

Thanks.

[titaniumed]

Rita

I sent you a Private mail

Ed

[Ldwc]

Real simple Lisa

Go to main page, select Forum (Up at the top)

Click on Surgical (revision) Adult patients 18+

Click on Post new Thread

================================================== =====================================

Rita had all her hardware removed and you can see how she is doing. There are not many "full" hardware removal testimonials since I have been reading here over 14 years. Partial rod sections and screws, yes, full, no.

If I were in your position, I would go to Hospital for Special Surgery and see what they say. (Dr Schwab) I would get a 2nd opinion at a main scoliosis center.
https://www.hss.edu/

HSS has a orthopedic excellence record that goes back to the Civil War. Possibly the best in Orthopedics in the world.

There is also Dr Errico and Dr Lonner....Both are highly respected scoliosis surgeons.

I would be extremely hesitant removing "All" my hardware unless there is a rejection or infection. If they can rule out the specific area by doing shots, then proceed by removing a screw if that's the problem. I would want to try to find the problem area and put a LOT of effort into it. You can also have a non-scoliosis related pain coming from somewhere else that has not been discovered yet.

Here is a study on progression after hardware removal (Age 10-21) Please realize the age on this one.
Loss of correction was 23 degrees. Larger loss with infection.
https://www.researchgate.net/publica..._Spinal_Fusion

Only 40% reported relief.

How old are you and where are you located?

Ed

Rita, I also sent you a private PM. Please call me, I would love to speak with you concerning your pain. I have done a lot of research and work trying to figure out what to do next. I would love to share with you what I have learned.

Lisa

[susancook]

Rita,

So sorry about all of your pain. I may not have read all of the postings above, so forgive me if I suggest something that you have already said.

I suggest that you call Dr. Lenke's office back, talk to his nurse and tell her that what she told you was in direct contradiction to what Dr. Lenke told you. You need to know why he will not do anything. You need to hear it from him. The next spine surgeon that you go to will ask why Dr. Lenke won't help you.

Request a copy of his notes for the visit immediately so you know why he cannot do anything for you.

Do you have copies of all of the imaging that he did?

I have broken numerous rods and screws and have had them replaced.

Keep us posted. Take some deep breaths....if you can.... and advocate for yourself.

Susan

[RitaR]

Hello Susan. I can’t tell u how disappointed and heart broken I was when Dr Lenke’s nurse called me after all we did to see him,,,expense in flying there, not to mention the bone scan and ct scan he asked us to get and send to him. Then, his nurse calls and says “Dr Lenke has nothing to offer you...okay?” And, I thought she truly acted like she couldn’t get off the phone quick enough. I quickly said “Ummm, no, it’s not okay. That’s not what he said when we were standing in his office”. And she said “well that’s what he says today. And she hung up! I was in Tears! Dr Lenke took one look at my xrays and said “Well, I can see why you are in such horrible pain...look at this right here...” and he was watching me as I walked. The nurse could NOT get off the phone quick enough! She was borderline rude. Dr Lenke did my very first surgery and I still cannot believe he turned me away. He told us in the exam room he would be more than happy to take care of me again and he knew exactly what the problem is. I’m sorry to reiterate this but I really have a physical problem....and it’s not something I can just put up with. It’s effecting my work life and home life. I can’t do anything without dying in pain!

[titaniumed]

Rita, I am so sorry this happened......its just hard to believe.

The good news is that he has seen something that is "standing out".... Most of the time, its hard to locate where pain is coming from.

I worked in severe pain for many years, working with severe adult scoliosis pain is pure agony.

Ed

[RitaR]

The bad news ....Dr lenke said he had nothing for me..or his assistant who called me. I was shocked! He told us in the room he would be glad to take care of me and he could see what the problem was. Ugh!!!!

[susancook]

Hello Susan. I can’t tell u how disappointed and heart broken I was when Dr Lenke’s nurse called me after all we did to see him,,,expense in flying there, not to mention the bone scan and ct scan he asked us to get and send to him. Then, his nurse calls and says “Dr Lenke has nothing to offer you...okay?” And, I thought she truly acted like she couldn’t get off the phone quick enough. I quickly said “Ummm, no, it’s not okay. That’s not what he said when we were standing in his office”. And she said “well that’s what he says today. And she hung up! I was in Tears! Dr Lenke took one look at my xrays and said “Well, I can see why you are in such horrible pain...look at this right here...” and he was watching me as I walked. The nurse could NOT get off the phone quick enough! She was borderline rude. Dr Lenke did my very first surgery and I still cannot believe he turned me away. He told us in the exam room he would be more than happy to take care of me again and he knew exactly what the problem is. I’m sorry to reiterate this but I really have a physical problem....and it’s not something I can just put up with. It’s effecting my work life and home life. I can’t do anything without dying in pain!

Rita,

I hear:

- that you are in a lot of pain
- you heard Dr. Lenke look at the xrays and say, "Well, I can see why you are in such horrible pain...look at this right here..."
- his nurse called you and said that, "Dr. Lenke has nothing to offer you....okay?" You said, "No, it's not okay. That's not what he said when we were standing in his office". And she said, "Well, that's not what he says today".

I get why you are frustrated/confused, there is a disconnect in information.

My questions:

- Who was in the room with you when Dr. Lenke said that he sees on the xray why you are in such horrible pain? What did he point to? What does that person remember about the visit, what Dr. Lenke said?
- What was the follow-up going to be? Was Dr. Lenke going to schedule more surgery? PT? What? How did he say that he could "fix" whatever he saw on the xray that he said was the cause of the "horrible pain"?
- Do you have a written copy of the CT, bone scan, etc with the interpretation [radiologist's reading]?

Where are you going from here? You need to decide your course of action.

What would I do? [Knowing only what you have written as my guidance.]

- I would request a copy of the CT with radiologist interpretation, the bone scan, and any other labs or radiology that you had done in conjunction with the visit.
- I would request a copy of his medical notes from that visit.
- Review everything with a person [friend, partner, husband, etc] that can help you think this through.

Depending on the information/results of the testing, maybe post the info here and ask for advice.

- Does Dr. Lenke have a PA or NP that you have also seen? Request a phone call with that person.

It seems reasonable to ask for a phone visit with Dr. Lenke to ask him what he meant when he said that he could see what the problem is and then why did he change his mind? When you can set up the phone visit, make sure that you have your support person with you [??? that went with you to the appointment??].
Write down your questions because you will have a very limited time to talk and listen.

If he says that he has nothing to offer you....who would he suggest that you consult with for help with your pain?

I hope that some of this makes sense to you, because I think that I don't have all of the information about you and your problem.

I hope that you are able to find help.

Susan

[Pooka1]

Rita I have been reading along with your posts. I think what Susan wrote is some very good advice.

There is some communication breakdown here. It sounds like he did see something on x-ray and in your gait but determined that surgery can't address it. If so he should have told you what he saw and what else to try... PT, something.

Don't give up. Now that you have imaging you can try another surgeon.

Good luck, Rita.

[titaniumed]

There is some communication breakdown here.

Your not kidding....Rita did call me yesterday, and we had a good talk.

Its up to Rita in regards to posting here on her case, which of course is so difficult given the amount of pain she is in. Internet communication can be a difficult thing and with the amounts of information that all of us have, the facts can really jet jumbled. You cant cover everything by e-mail or texting, and if the telephone is scrapped, we might as well all be mutes. Nobody likes to use the telephone anymore which drives me crazy. Of course, in person is best.

I hope that she can finally get repaired and out of pain with the history that she has.....Fingers are crossed.

She does have all her diagnostics.

Susan, excellent post, you and I are on the same page. If I came up there, we could talk for days....

I just have to mention that in talking to many folks around here for years, many revision patients with incredible spine and scoliosis histories, how can I not mention my surgeon, Dr Menmuir, who pulled off some incredibly difficult surgeries on me. Of course there are no guarantees and things will happen with adult scoliosis surgeries, but still I am amazed at how well I came out. Its been over 11-1/2 years now.

Ed

[RitaR]

Thank you Ed. I enjoyed our talk and appreciated your information. I will definitely keep you posted. Came home from work at 10am with severe pain and muscle spasms, breathing problems... not fun!
Spent most of today in bed.