Upstate NY w/ kyphosis

[Ryy]

Hi guys and gals,

I have been browsing for a little while, this is my first post. I'll tell you about my story, and i hope to get some help as well as help any of you that i can!

I'm 24, diagnosed with S. kyphosis at age 14. Degrees of my curve is in the 70's. I live in the Albany NY area. Has bothered me on and off since being diagnosed, but for the last year and a half, has been constant. Constant dull pain, affects my breathing, exhausted easily, body is just really out of alignment big time. Seems to be slowly getting worse.

I've done most of the non-surgical things that you can do for kyphosis, with little relief (pt, all the exercizes i can find, pilates, chiro, massage). If anyone could recommend other things to do that have been or might be successful, that would be great. I'm actually getting my first corto shot this wednesday (Feb 3). Hopefully it will help with the pain, although i don't see how it would help with the breathing. My breathing has become very manual. If i relax and slouch, i can't really get a good breath, and instead of my chest opening up and expanding forward, my back seems to expand and curve deepeer (if that makes any sense). If i stand up straight and try to align myself, my breathing is better but must always make sure i'm standing up straight which starts to get exhausting halfway through the day. Either way i try, i pretty much have to manually take each breath to different degrees. Anyone have any advice or insight with this? Just to let you guys know, i do eat really healthy, i'm into holistic health, and my diet is excellent, but i'm open to any supplements or foods that could possibly help if recommended.

I have an appointment at Hospital for Special Surgery in NYC on Feb 12 with Dr. Cunningham. Anyone seen or have any info on him? I've been seeing a local doc here in Albany for a little bit, who is alright, but can't do anything else for me other than the corto shot which is coming up. Thanks to another fella i talk to in the area who has kyphosis too, he recommended another doc in the same office who he likes a lot, which i have an appointment with in March. I want to make another appointment with a well known doctor who deals with kyphosis, can anyone give me some good names for docs in the Northeast? I'm highly considering the fusion surgery lately. Any words would be excellent. Hope to hear from you guys, thanks!

[loves to skate]

I don't know anything about kyphosis, but you might try Frank Rand at the New England Baptist Hospital in Boston. It certainly would be worth a phone call at the least to find out if he has experience with kyphosis. Boston and NYC are probably close to the same travel distance from Albany.

[JenM]

Hi Ryy-

I am having my surgery done in June to correct my scoliosis and kyphosis at the Hospital for Special Surgery. My surgeon is Dr. Oheneba Boachie-Adjei. You should really look into making an appointment with him as I hear he is one of the best in NY. He is Dr. Cunningham's partner. If you have any other questions, let me know.

Good luck with your appointment in February.

JenM

[Ryy]

lovestoskate,

i'll look into Dr. Rand, thanks!

jenm,

what's your degrees? where do you live? do you like it there at hss?

[JenM]

Hi Ryy-

My thoracic curve is 55 degrees and my lower curve is 58 degrees. I was never really aware that I had kyphosis until my visit with Dr. Boachie and he told me I had a 68 degree kyphotic curve. I am really nervous about the surgery but am exciting about getting it over with as I have been wanting to do it for over 10 years! The pain just keeps getting worse every year.

I have only seen Dr. Boachie and been to HSS one time, back in November. But everyone I have heard of or have met on this forum has done really well there and has gotten great correction with Dr. B. You should go to the HSS website. You'll get alot of into there on Dr. Boachie & Dr. Cunningham. I believe HSS also ranks #2 in orthopedics in the country, which is good to know! It has a really good reputation.

Other really good reputable doctors in NY from what I hear on this forum are Dr. Lonner and Dr. Neuwirth. I haven't been to them but they are highly rated on this forum.

Best of luck to you! Keep us posted on how you make out.

JenM

[titaniumed]

Hi Ryy

I used to have nice curves, that’s all in the past now.

I used to do quite a bit of hot water therapy, followed by massages. I found that the hot water before helped loosen things up quite a bit for my masseuse. I also had a great Chiro.

Be sure to let us know how things go at HSS. They have been doing their thing, for about 100 years now.......that should make you feel better. They have seen a few bad backs through the years.

I used to drive through Albany on my way to Vermont skiing years ago.
Just some old memories.

Welcome to the forum
Ed

[Doodles]

OK--I feel silly asking this since you would think after all the time and research I've done the last 2 years I would know this. Kyphosis just means the rib hump right and not the curve? I've just recently seen some as above cite their kyphosis degrees. I don't think I've ever been told that. I know that I still have the rib hump but the deformity isn't as bad. However, in last couple weeks I'm convinced it has gotten worse. At 10 months is that likely? I actually asked about it in an e-mail even before it seemed worse and my doctor said thoroplasty--I think that's it-- would not need to be done. I guess I always assumed if you had curves you also had kyphosis. Still learning. Janet

[titaniumed]

http://en.wikipedia.org/wiki/Kyphosis

Rib humps in scoli are from rotation of the vertebrae. (looking head to toe)

Funny how rotation isnt much of a factor in kyphosis. You can see kyphotic coronal x-rays that are PERFECTLY straight, but when you shoot saggittal (from the side) you see the forward bend.

We all should have natural kyphosis and lordosis in our spines.

Hope this helps
Ed

[Doodles]

Thanks, Ed, yes that makes sense. I definitely had rotation and still have some. My bellly button seems off kilter with everything else. I sure don't remember getting a "number of degrees" for it though. Janet

[Ryy]

Hopefully HSS will do us both very good jenm! I wish i could just go there tommorrow and get it over with, i'm sick of this pain and breathing issues and exhaustion I actually went to my primary doctor today. I don't know whether something else is going on, or the pain is just mentally and physically taking a huge toll all of a sudden, but for the last 3-4 wks, i'm just so exhausted along with another thing or two. I have been going to bed at 7-9 pm and am still fatigued all the time. I'm getting blood tests tommorrow, wish me luck.

Titaniumed, did you have scoli or kypho? I have very slight scoli, less than 10 degree curves there, not the prob at all for me though.. Massages give me some relief for sure, thanks, and i'll try to hot water therapy as well.. Yep, Albany is my playground

Anyone else with Kyphosis out there? I'm wondering what other issues people have out there. I have some digestion issues as well, mainly i get so bloated when eating. Been through all the tests, nothing major comes up positive. Just wondering how much of my breathing issues are related to the kyphosis and how much are related to the digestive issue. I know for a fact (by years of trial and error experiments) that they both play a part with my breathing troubles, i just don't know how much of each. Well take care guys!

[jrnyc]

Hi Ryy
Dr Lonner in NYC is terrific...also like Dr Neuwirth, also in Manhattan....and they both take my insurance...but just as important, they are both excellent surgeons with many years of scoliosis surgery under their belts...& great reputations!

liked Dr Boachie when i saw him, but he didnt take my insurance...i have the kind of insurance where there is no reimbursement..so i can only go to doctors in the network...if i go outside the network, i am on my own! thus, i saw Dr Boachie in NYC & Dr Anand in CA for consults, but had to pay cash for each of them!

i think you are best off in the major cities for surgeons for scoli...i guess there could be some really great surgeons tucked away in other places...just harder to locate them!

best of luck
jess

[fandango]

Hi
Can't offer you much advice but I can empathise with you. I have had kyphosis since age 19 and i'm now 38 yrs. I saw doctors when I was younger and intermittently when the pain has got too much. They have never offered me anything more than short term physiotherapy. As far as I can remember I have never even been told what degree of curve I have. I have always controlled the pain with excercise. The last 2 years my curve and pain has got significantly worse. So, I have gone to my GP and asked to be referred for a spinal fusion. My mum has always nagged me to have this done but until now I would not even consider the idea. Now, I have had enough! It's been a bit of a revelation for me; I realise I have been in denial this whole time. Kyphosis has had a big impact on my life - I have been in constant nagging pain and yes!! exhausted all the time!! I have been to the drs for exhaustion regularly - bloods always normal. Have taken antidepressants in the past for a year. I have pain in lower back and neck as well as over the curve. I have tingly fingers and leg weakness - i have to lift my legs into and out of the car and over my bicycle.
I don't really have breathing trouble. My lung capacity is less than it should be and is always remarked upon when I am tested at the gym etc I have had a persistent cough for over a year and phelgm collects on my chest, which I now feel sure is down to my kyphosis.

Good good luck, I hope it all goes well for you and we can all be pain free

[debbei]

Hi Ryy-

My thoracic curve is 55 degrees and my lower curve is 58 degrees. I was never really aware that I had kyphosis until my visit with Dr. Boachie and he told me I had a 68 degree kyphotic curve. I am really nervous about the surgery but am exciting about getting it over with as I have been wanting to do it for over 10 years! The pain just keeps getting worse every year.

I have only seen Dr. Boachie and been to HSS one time, back in November. But everyone I have heard of or have met on this forum has done really well there and has gotten great correction with Dr. B. You should go to the HSS website. You'll get alot of into there on Dr. Boachie & Dr. Cunningham. I believe HSS also ranks #2 in orthopedics in the country, which is good to know! It has a really good reputation.

Other really good reputable doctors in NY from what I hear on this forum are Dr. Lonner and Dr. Neuwirth. I haven't been to them but they are highly rated on this forum.

Best of luck to you! Keep us posted on how you make out.

JenM

I always knew that I had scoliosis, but like you Jen, I never knew that I had kyphosis as well until priorto this surgery. It was corrected during surgery, and I don't know what that measures now.

[titaniumed]

Hopefully HSS will do us both very good jenm! I wish i could just go there tommorrow and get it over with, i'm sick of this pain and breathing issues and exhaustion I actually went to my primary doctor today. I don't know whether something else is going on, or the pain is just mentally and physically taking a huge toll all of a sudden, but for the last 3-4 wks, i'm just so exhausted along with another thing or two. I have been going to bed at 7-9 pm and am still fatigued all the time. I'm getting blood tests tommorrow, wish me luck.

Titaniumed, did you have scoli or kypho? I have very slight scoli, less than 10 degree curves there, not the prob at all for me though.. Massages give me some relief for sure, thanks, and i'll try to hot water therapy as well.. Yep, Albany is my playground

Anyone else with Kyphosis out there? I'm wondering what other issues people have out there. I have some digestion issues as well, mainly i get so bloated when eating. Been through all the tests, nothing major comes up positive. Just wondering how much of my breathing issues are related to the kyphosis and how much are related to the digestive issue. I know for a fact (by years of trial and error experiments) that they both play a part with my breathing troubles, i just don't know how much of each. Well take care guys!

Scoli. My kyphotic and lordotic curves were normal. I had 2 70 degree balanced curves.

All my stomach digestion issues mellowed out considersbly after my surgeries.
Ed

[JenM]

[QUOTE=Ryy;91424]Hopefully HSS will do us both very good jenm! I wish i could just go there tommorrow and get it over with, i'm sick of this pain and breathing issues and exhaustion I actually went to my primary doctor today. I don't know whether something else is going on, or the pain is just mentally and physically taking a huge toll all of a sudden, but for the last 3-4 wks, i'm just so exhausted along with another thing or two. I have been going to bed at 7-9 pm and am still fatigued all the time. I'm getting blood tests tommorrow, wish me luck.


Ryy-

Did you ever had your Vitamin D levels tested? For many few years I dealt with exhaustion. Vitamin D isn't usually a thing the doctors check with normal blood work. I went to a rheumatologist last year and he tested my Vitamin D levels. My levels were very, very low (i have very fair skin and don't get out in the sun much) and he recommended 2,000 units a day of vitamin D. About 2 months after taking it, I felt alot better. My energy levels have really soared and I believe it is from this. However, pain tends to wear you down. On the days when my back is really bothering me, I notice I feel like I get tired and worn out more.

Also, I was just wondering, do you have any problems in your neck from the kyphosis? I have a herniated disc in my neck and have some type of pinched nerve that runs down my shoulder and into my arm, causing tingling into my fingers, elbow and shoulder area. It is so annoying. I am wondering if it is related to the kyphosis and if this will get better after the surgery.
By the way, I see that you got a cortisone shot today? Do you notice any relief?

Take care,
JenM