Upstate NY w/ kyphosis

[Ryy]

jrnyc,

I'm going to look into calling Dr. Lonner and a few others for sure.

fandango,

I'm sry to hear it's gotten worse. Look into getting the surgery, i'm 100% going to do it at some point soon. I've had enough as well. Feel free to pm me as we're both in similar situations.

ed,

I'm hoping my digestive issues will calm down with surgery. Mainly i get so bloated, and often indigestion stuff. Bm's are pretty much normal. Gastro tests show slow gastric emptying. No major food sensitivities for me, did all the testing at docs and of course personal experimentation diets. Since everything and the muscles are so outta wack, i'm quite positive this is the cause. I also have gained 10-15 over the last 2 months along with the exhaustion thing. Blood tests are coming back in a day or 2, checking a good range of things. Maybe i'm just sick of being in pain and breathing troubles, my body has had enough, maybe not. I'm happy to hear your digestive issues calmed down with your surgery

jenm,

i'm not sure if the blood tests today check vit d, i'll see in a day or too and if not, get it checked. I don't have any neck issues other than the classic neck that sticks out forward more than normal with kypho people. I don't think i have any nerve issues yet. Sometimes i do get a cold sharp pain in my right shoulder, happens on and off for years. I do have pretty bad carpel tunnel in my right wrist, which i think is from weight lifting when younger and 10 years of guitar. Are you gonna go for the surgery jen?

update on me,

6 corto shots today, i was confused when they said, "Okay, we're doing C-7-T-3 shots today right?" That's way up by my neck and way upper back. Hm. I'm going to call my doctor tommorrow, as another doctor in the same office did the shots today. My kypho is mid-to-upper back. Maybe they start up and work their way down with more rounds of shots. If so, prob a money making thing for them. I'll see tommorrow. Pain is less today, feeling pretty good actually, but can't say if it's because of the corto. Could be the sedation effects, or the mild swelling from the shots taking the focus off of the usual back pain. We'll see in 4-5 days ay? Trying to stay positive on this rollercoaster we all know of, having scoli or kypho!

Looking forward to Hospital for Special Surgery Feb 12

Take care

[Ryy]

Bump for my post on here before this from a week ago...

Update on the corto shots: Back pain has been much less, but i don't know if it's because the corto really has helped the direct pain, or the side effects i get from corto has taken over the regular back pain and is the main focus now. Has anyone had any side effects from corto shots? I'm sensitive to corto: bloated like a mother, mild mood change, waking up 3-5 times in the middle of the night to go #1, sweating more. Will go away in time, just curious about others' experience with corto shots..

For those who've had a fusion(s): i'm not sure about scoli, but with kypho, there is an almost constant need/want to crack your back. Standing up and throwing your arms to the side while twisting your torso gets some cracks, laying on a hard object, and of course the chiro. When fused, do you feel a need to have your back cracked? Can you crack it yourself if so without doing any damage?

Appointment in NYC at HSS this Friday, i hope it goes well. I really wish there was a test that would confirm my digestive and breathing issues are related to the kypho. Wish me good luck, and good luck to you all, you deserve it

[titaniumed]

Ryy

I blew into a computerized breathing machine and its results were that I had "restricted breathing". I didn’t feel like I had any problems with my breathing, but it was confirmed 4x since they thought there was a malfunction.

I would recommend drinking water. Its just a really good idea for many reasons.
My surgeon told me that my reflux and other assorted upper GI issues were not caused from my scoliosis. It seemed that he didn’t want to guarantee any results in this area after my surgeries.

Here are some links that will be helpful.

https://www.infusebonegraft.com/ques...r_surgeon.html

https://www.infusebonegraft.com/fact...t_surgery.html

https://www.infusebonegraft.com/ques...ur_doctor.html

Go ahead and print out some of those questions to take with you.
Good luck
Ed

[JenniferG]

"For those who've had a fusion(s): i'm not sure about scoli, but with kypho, there is an almost constant need/want to crack your back. Standing up and throwing your arms to the side while twisting your torso gets some cracks, laying on a hard object, and of course the chiro. When fused, do you feel a need to have your back cracked? Can you crack it yourself if so without doing any damage?"

I used to feel like that a lot pre-op but since surgery, I haven't felt the need to crack my back. It feels comfy all the time. I don't get that little pressure feeling that things are not quite in the right place, anymore.

[loves to skate]

Cortisone shots. My face flushes for about 3 weeks after, I break out in pimples all over my face, I get insomnia and constipation. I can't remember all, but I don't want to have any more cortisone shots, ever.
Sally

[rainbow2010]

You might want to try the ortho department at Strong Memorial Hospital In Rochester, NY. They have been training scoliosis doctors for over 30 years!

[JenM]

Hi Ryy-

I was just wondering how your appointment went with Dr. Cunningham at HSS today. Did he recommend surgery?

Hope all went well.

JenM

[theizzard]

I had/have kyphosis and that's what my surgery corrected one year ago. Dr. Rand was my surgeon and until meeting him I hadn't been told about my sagittal imbalance or kyphosis. The only thing that was mentioned was my scoliosis. I knew I leaned forward but I didn't realize that was causing such problems. Anyway, a year later and I do stand much straighter and with my cane I walk quite well. The pain I have is quite different than before and it is much less. I am hopeful that it will completely go away. Dr. Rand told me I should get my Vitamin D levels checked but I haven't been to my gp yet. I try to remember to take all my vitamins including the calcium with D but why on earth do they make them so huge. I can swallow a dozen little pills at one time but one of those gigantic vitamin pills makes me gag.
avis

[Ryy]

Hey all,

Well i never ended up going to HSS. Turned out to be just a little 3 day weekend trip to NYC. On the way, i called my insurance company to ask a question about the surgery coverage, and i figured i'd double check to see if the visit would be covered like i was told by HSS. Turns out it wasn't, so i didn't even bother going. I knew i should've called a long time ago when i made the appointment, who knows why i didn't :/ I have one of the best insurance policies available, it's just not supported at Dr. Cunningham's office.

I'm on to looking for another doctor today. Recommendations appreciated much! I have an appointment in March with a different local doctor who's highly recommended by a buddy of mine who also has kyphosis. He doesn't do the surgery but is very knowledgeable i hear.. take care all

[Ryy]

Been researching for the last few hours. So many docs out there. If anyone can give suggestions of the best docs out there in New York (city and upstate), that would be great. Dr. Lonner doesn't take my insurance. Dr. Errico and Dr. Goldstein at NYU hosp for joint diseases does. Are they good? No docs at Columbia Univ take my insurance. How about a few at Rochester Univ, Dr. Molinari, Dr. Rechtine, or Dr. Rubery? Recommendations for docs in NY are appreciated.. thanks guys

[titaniumed]

Ryy and Everyone........

Always check with your insurance co before you visit ANY Doctors. Also check with them as far as diagnostic tests go.

My neighbor, who didn’t check is now going to have to pay for a CT that was done last month, and it isnt cheap. $2400 for just her neck. She didn’t run through her PPC

Don’t let them weasle out of paying, due to a technicality......

Also remember PPOs run through your PPC.(Primary care physician) They are essentially the insurance gate keepers.

-------------------------------------------------------------------------------------------------------------------------------------

Dr Errico is certainly qualified. There have been posts about him here. He works with Dr Nuzzo who is certainly worthy.. These are incredible men........Dr Nuzzo just does the unfortunate kids... free.
http://www.pediatric-orthopedics.com..._cv/rmn_cv.htm

Ed

[joyfull]

Ryy, Dr. Ericco works with Dr. Lonner; in fact, they are doing a research study together. I've heard good things about him. Good luck, Joy

[Ryy]

I have an appt with Dr. Errico in NYC on March 18. Appt with Dr. Molinari in Rochester NY in March too, but not sure if i'm going to that one yet due to the longer distance, I might though. Appt this Tues with a different local doc who i haven't seen yet in Albany NY, who is very very good i hear. All 3 are listed on here for the scoliosis society. Well take care guys

[Ryy]

Update on me:

Pulmonary function tests coming up, but no mri yet. While doing reflex tests (like the knee tap), he said my reflexes were pretty brisk, it's called hyperreflexia. Nerve conduction study coming up soon for that. Hopefully nothing will come out abnormal. Also have the appt with Dr. Errico in NYC on March 18..

For you kypho and scoli fellas and ladies, i'm wondering if some of you have/had to purposely stand a certain way all day and night, flexing and pushing different posture muscles in whatever ways you have to, to get pain/discomfort/breathing relief? It's such a bummer for me: to get the relief i need to just to help my breathing so i can function through the day, i have to purposely lift my shoulders way up and slightly back to be able to breathe correctly. If i let my shoulders relax, my chest doesnt open up, my BACK opens up with the lungs, as well as muscles in there tighten in the improper ways. Also have to push my pelvis out which takes some discomfort/pain away in the back. Just wondering if i'm crazy here with this or not :@

I don't know whether i'm just getting older or what, but my metabolism has very recently all of a sudden just crashed. A week and a half ago, started the candida diet (absolutely no sugar, no starches, it's basically meat vegetables and vitamins). My little belly is a little less but still there strong. Not that big to begin with, but certainly have had a few remarks about my "pouch"! If i did this diet a year ago, would prob have a 6 pack! Also, my legs seem to really need to be stretched behind the heel and lower calf like crazy. This started a few months ago. I do the stretches but still just seems abnormal. Had blood tests checking for many things, came back normal. I started a desk job 2 years ago, which slowed down my metabolism slightly when i started, but recently everything just seems to be going downhill so quickly all of a sudden Just wish i could get a break. Sorry for venting, but sometimes you gotta do it! thanks for listening guys, take care, and advice would be great. Enjoy yourselves

[Ryy]

Update on me:

Awaiting my appt next wk, to discuss the results of the mri, pulmonary, and nerve tests. Getting facet blocks on monday 3/22 by him as well.. Wed 3/24, seeing Dr. Dryer at NYU for the first time.

Still in constant dull pain to different degrees, and breathing is crappy. The only major thing that helps is getting massages. I've been going once a week. I would go every day if i could. The relief lasts 2, maybe 3, days at most. The back exercises and stretching helps, but massages are number 1 for me. Well, take care guys