Surgery 2 years ago

[RitaR]

Susan, I have a call into speak with Dr Lenke, or at least a request.dr Lenke requested I send him a ct and bone scan then I get to,she doesn’t want to see me. Sounds kinda wonky to me!

[susancook]

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

Ed, Call Dr. Menmuir and ask him to come out of retirement and help me and Rita!

Susan

[RitaR]

I just wish it was that easy.
I’m gonna have to see someone soon because my hands are numb and tingly now..why I’m dropping so many things.

[Pooka1]

That's caused by issues in your neck. Did you tell Dr. Lenke about those symptoms? Tell some doctor. Ed can advise on this.

[titaniumed]

It sure does sound like the neck.... The neck affects the arms and the hands. Thumb, index and middle finger numbness is C5-6, C6-7. Herniation's also can protrude left, right, and center. Mine protrude to the left, so my left hand can get tingly and numb on some days. Stenosis in the neck is also problematic. I cant see any scoliosis surgeons not looking at the neck since its part of the spine package. Scoliosis patients have so much on the plate that they might not mention other problems that they see....BTW, your engine needs a complete re-build, AND you need 4 brand new tires. Its hard to reveal that much bad news. I am sure that head shaking and sighs happen after many of us leave the office. There are never any easy answers.

My neck has no spinal deformity at all, yet is a problem. Disc degeneration in the neck (C5-6 C6-7)comes in 2nd place after the lumbar. These stats are for everyone, not just scoliosis patients.

I am not rushing into neck surgery....

These problems that we have sometimes are not easy. Even if you pinpoint a pain producer, there is this element of risk that needs careful consideration. Not finding any pain producers makes it that more difficult.....but people will travel to seek out experts and not just having to do with spine. There is always hope that someone else will think differently and look with new and different diagnostics. Its important that diagnostic equipment manufacturing companies continue on with new imaging technology. Larger well known scoliosis training centers and specialty hospitals are the best chance that new technology is being explored. I am a strong believer in new technology and devices.

Rushing into surgery as adults is never something to take with a grain of salt. Scoliosis revision patients are the bravest people on the planet....the thing is that the odds of complication increase every time you go under the knife.

If you want to get struck by lightning, go hang out on a Florida golf course, but you will never get that hole in one if you don't try.

Ed

[RitaR]

And,sometimes we don’t have a choice. I know something is not right. I should not be in this much pain all day every day.

pS Ed, I didn’t receive your last message. All I got was a blank page.

[RitaR]

I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because I’ve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I won’t be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I can’t keep this up the way I’m going.i will for sure keep you all posted, of course.

[LindaRacine]

I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because I’ve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I won’t be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I can’t keep this up the way I’m going.i will for sure keep you all posted, of course.

Hi Rita...

I could have written this. Prior to my first scoliosis surgery at age 42, I had a tremendous amount of pain. Thankfully, I was self-employed, so I could lay down in the late afternoon to relieve the muscle pain. It was the only way I could get through making dinner.

Although I tried a lot of different therapies, I look back now and wish I had found a good physical therapist to see if there was something more I could have done to avoid that surgery. I don't think PT works for everyone, but it works for a lot of people. I think the keys are 1) finding a good therapist, 2) making sure you're doing the exercises correctly, and most importantly, 3) being religious about doing the exercises every day.

--Linda

[KathyInIowa]

I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because I’ve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I won’t be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I can’t keep this up the way I’m going.i will for sure keep you all posted, of course.

Hi, Rita. I am so sorry you are living in so much pain. I hope you can find some answers soon.

I had my surgery 3 years ago at Twin Cities Spine Center. My surgeon was Dr. Joseph Perra. He gave me my life back. I really like him as a surgeon, but also as a person. Anyway, I'm sure they are all good at that facility. Please keep us posted on what they tell you.

Kathy

[RitaR]

Oh Kathy,
I cannot tell you how bad the pain is! I just can bearly make it. The pain is so bad and just disabling. I’m almost to the point I can’t stand it. I’m missing work. I come home from work and straight to bed. I wouldn’t recommend this for anyone! I just don’t know where to turn! I try to get ahold of Dr Lenke since he did my first surgery but no one returns my call. I’m soooo frustrated!

[jackieg412]

That is really tough. It does seem if someone should return your call. Maybe it is time to move to a different doctor. Keep trying. It won't move quickly but try at a larger teaching hospital. Where do you live?

[Ldwc]

Oh Kathy,
I cannot tell you how bad the pain is! I just can bearly make it. The pain is so bad and just disabling. I’m almost to the point I can’t stand it. I’m missing work. I come home from work and straight to bed. I wouldn’t recommend this for anyone! I just don’t know where to turn! I try to get ahold of Dr Lenke since he did my first surgery but no one returns my call. I’m soooo frustrated!

Hi Rita,

I am so sorry for your pain. I also had the same experience with Dr. Lenke and his team. I have moved on to another Dr. That I am hoping will help me and I pray you can find someone else soon as well. No one should live in pain. Best of luck to you.

Lisa

[RitaR]

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

I haven’t posted on here for a while. Extremely frustrated and in horrible pain! Been to pain management, can’t do anything, just give me more drugs. I’ve contacted Dr Lenke. He told me I needed to contact Dr Gupta in St Louis. Not doing that. Almost didn’t survive last sx he did. Not sure what to do. Mayos wont see me. Almost to the point I can’t sit to work. I have no sl left. Seeing pain mgt again on fri. Cannot keep living this way. Can’t do anything.

[titaniumed]

Rita

Another option is ketamine infusion for pain.

Dr Joshi in Chicago.
http://www.nationalpain.com/dr-jay-joshi

You sit in a recliner and they hook up an IV and infuse ketamine. It dulls the pain receptors in the brain....

Ed

[jackieg412]

I would really consider the ketamine infusions. That drug was used during my last surgery as part of anesthesia , it has the property to leave you feeling out of pain and very peaceful. It lasted for a long time. No other effects.