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RitaR
06-01-2009, 08:17 PM
Hello All,
Please allow me to introduce myself - Rita Thompson, from Topeka, KS. I have had scoliosis since early teens. Having been scared to death with the thought of surgery at that time :mad:, but told by prominent back surgeon at KUMC that he would not do surgery if it were up to him. So, we opted not to...:D Have had little problems in the past, hardly any, but approx 3 years ago had a slipped disc and had a fusion L5-S1 with 7 screws. Now, in the last 2 mos having excruciating pain, to the point of not fighting going back to dr only to find out my curve has now worsened to the 80+ range, thoracolumbar region. It hurts to breathe a little, a lot if I'm stressed at all, like running or walking fast or just plain running at work here and there - anything to get me winded. Most of the pain is in the thoracolumbar region, on the left side predominantly. But, there's no comfortable position - except lying down doesn't hurt at all. It's the only relief actually.
My dr referred me to Dr. Lenke in St. Louis, MO. But, so far their office has been unable to get a call through, so my dr put me on pain patch and I've recently started Hydrocodone just to help me get through the day. Yikes! This is just not fun. I thought I was done with the back pain thing - having just had a DeQuervain's release this past mid-February.
Wondered if anyone had any advice or know anything about Dr. Lenke in St. Louis and can they really do something to make this 80+ degrees less? I'm sincerely hoping so!!! :o
PS: I did the Brace thing for 29 months when I was 13. Wasn't fun, but I just did it. I was determined to do anything to keep from having surgery - especially at 13! Now, with the most wonderful husband and son I am blessed with - I am determined to get relief (again) even if it means going through another surgery with yet more screws!

LindaRacine
06-01-2009, 08:42 PM
Hi Rita...

Glad you were able to figure out the registration thing. Welcome!

You'll be in good hands with Dr. Lenke, and he will almost certainly reduce your curve significantly. If you click on the Search link above, and type LENKE into the search box, you'll find some posts on him.

I would caution you to be careful about only taking the narcotics when you're really uncomfortable. This is just my own personal observation, but is seems that people who have to take a lot of narcotics prior to surgery, have a harder recovery.

Regards,
Linda

RitaR
06-01-2009, 08:53 PM
Hello Linda,
I felt like such a dummy with this registration thing. Thanks so much for all your help. I really do appreciate it! It really does help to hear there are other folks out there with similar problems. Although I have to admit I've only found one person so far with more than 80 degrees - I feel so special... Ha!
I appreciate your advice on the meds. I'll take that into consideration, but right now this Lidoderm patch is doing nothing. other than just being on me in the evening for 12 hours and nothing during the day then. I've had this scoliosis for years obviously, but never had this much pain - heck, most of the time there was no pain. Boy, to be that lucky again.
And, I appreciate the insight on Dr. Lenke. I'm hopeful he can just dangle me from my feet or something and make me straight again.... :)

RitaR
06-01-2009, 09:13 PM
Linda,
Maybe you can tell me - this numbness, tingling and actually muscle cramping and spasming around the left side of the ribs to the front - is that normal? I get that so bad sometimes, if I happen to be walking at the time, I just nearly cannot seem to walk until it passes....:mad:
And, I haven't taken any medicine all day long, just took the Hydrocodone tonight with this pain that is just nearly intolerable at this point. I don't know what I'll do if my dr is unable to get ahold of Dr. Lenke's office - I guess they'll call eventually.
This is not me - I am not a SICK person.... I don't have time for this... isn't that always the case?! :rolleyes:
THANKS!!!!

debbei
06-01-2009, 09:36 PM
Rita,

From what I hear, Dr. Lenke is supposed to be one of the best. I'm sure his office will get back to you; however, if you don't hear from them in a day or so, it wouldn't hurt to put in a second call. I had to do that with a NY surgeon that I wanted an appointment with. I have heard of a number of people with greater than 80 degree curves, so don't feel bad that you're alone out there.

In my case, it was about 5 or 6 months from the time that I discovered I needed surgery to the actual surgery date. The decision is a hard one to make, but once you have you will have a certain level of peace about the whole thing. Not that you still can't be nervous, but it's nice to have a plan.

Good luck,

RitaR
06-01-2009, 10:21 PM
Hey Debbie,
Fellow Milwaukee Brace wearer - wasn't that fun?!
I'm glad to hear that 80+ degrees isn't unusual. Although Im a bit taken back by the amount of pain I'm in. Hurts to breathe = heck sometimes even hurts to talk. Isn't that horrible?! And, these pain patches dont seem to do a thing..... Gees, couldn't we be young again???!!!!
You really have made me feel better about the 80 degrees.....THANKS!:)

LindaRacine
06-01-2009, 10:37 PM
Linda,
Maybe you can tell me - this numbness, tingling and actually muscle cramping and spasming around the left side of the ribs to the front - is that normal? I get that so bad sometimes, if I happen to be walking at the time, I just nearly cannot seem to walk until it passes....:mad:
And, I haven't taken any medicine all day long, just took the Hydrocodone tonight with this pain that is just nearly intolerable at this point. I don't know what I'll do if my dr is unable to get ahold of Dr. Lenke's office - I guess they'll call eventually.
This is not me - I am not a SICK person.... I don't have time for this... isn't that always the case?! :rolleyes:
THANKS!!!!
Hi Rita...

The one thing you'll discover if you hang around long enough, is that, while we're all really different, you're bound to hear of someone else with similar symptoms. With that said, your rib symptoms sound pretty unusual. I'll be anxious to hear what Dr. Lenke has to say. Hope you can get your appointment scheduled soon. Not that it would be any faster, but Dr. Bridwell is also an excellent surgeon, and I think he treats more adults than Dr. Lenke.

Regards,
Linda

txmarinemom
06-02-2009, 12:53 AM
Hi, Rita ...

My surgeon, Darrell S. Hanson, did his SRS fellowship at Washington under Lenke, and I know people locally (in Houston) who have flown for surgery with Lenke. Both my surgeon and his patients believe he's VERY competent. As Linda noted, I've heard great things about Bridwell, and I think you'd be in good hands with either surgeon.

I had the rib spasms (sometimes front, sometimes back - across the ENTIRE back ... I only made it worse by breathing) with a 53 thoracic curve, apex at T9. They normally lasted 20-30 minutes, and when my boss walked by my offi-cle (cube with a door) and saw me crying, he knew what was going on.

Linda, I sort of have to disagree with the generalization of drugs before surgery make for a tougher recovery. Yes, years of pain mgmt will probably make you more tolerant, but I was more tolerant than the normal 300 lb guy (at 95 lbs.) when I started my 4 year stint with my pain doc 8 or so years before surgery.

Meds affect us all differently.

Hang in there, Rita.

Regards,
Pam

Sherie
06-02-2009, 08:43 AM
Hi Rita

I flew to St. Louis to take my daughter to Dr. Lenke. He handles very complex cases, have you seen his website? My daughter's wasn't one of those, but I decided it was worth the effort for us.

I called the office myself and made an appointment. Our insurance is PPO so that wasn't a problem. They may ask you if you were referred, just give them the name of your current scoli physician. If you tell them your in a lot of pain, I think you'll get a quicker appointment because it can take several months. He has a 6 month backlog on surgeries but again, your case may be different.

Good luck to you, let me know if you need any further information. Send me a PM and I'll give you my email.

RitaR
06-02-2009, 06:15 PM
Absolutely Sherie, I would send you a PM, but I'm a newbie on this site. I'll need instructions on that.... THANKS!
I'm going to try to call the office myself tomorrow. It's after hours now and I just got home from work. I"m exhausted! :rolleyes:

Sherie
06-02-2009, 06:26 PM
I'll send you one instead with my email. When you log on to NSF, look at the upper right corner box, there's a link for Private Messages, click on that and you can go to your inbox from there.

To send a private message, left-click on the recipients user id, you'll get an option to send a private message.

RitaR
06-02-2009, 08:19 PM
Hey Sherie,
I saw your private message, but i just went into Outlook and sent you a message from there. So, you'll have to get in your email to read my message. Sorry. I didn't think about replying in here. See, told ya I was a newbie on here.....
Oh and nice to meet you....
It's already been nice talking with you...

titaniumed
06-02-2009, 08:47 PM
Hi Rita

Welcome to the forum.

We feel your pain. I'm wondering why your scoliosis wasn't addressed 3 years ago? Why was one level fused?

One would think that if you have an 80 degree curve going on that the whole spine would be addressed?

Have you tried massage and hot tubs? I did that for years.

Ed

RitaR
06-02-2009, 09:38 PM
I don't know why my scoliosis wasn't addressed three years ago either. No, I don't have a hot tub, but I think after this ordeal is finished I should be able to get a prescription for one from my doctor - like that would ever happen...

JenniferG
06-02-2009, 11:39 PM
Good luck Rita. Being in pain is very lonely. But many here have experienced pain and understand. When you're here, you can talk about anything scoliosis related and you're bound to find someone who's been there, done that, and better still, can offer some support. This site is fabulous.

Jen

Sherie
06-03-2009, 01:02 AM
Hey Sherie,
I saw your private message, but i just went into Outlook and sent you a message from there. So, you'll have to get in your email to read my message. Sorry. I didn't think about replying in here. See, told ya I was a newbie on here.....
Oh and nice to meet you....
It's already been nice talking with you...

Nice to meet you too.:)
Glad to help in anyway I can.

RitaR
06-03-2009, 07:10 PM
Hey Jennifer,
Nice to meet you - Yes, I love this site. I no longer feel ALONE with all this pain. It helps to know there are others who feel the same.
We will talk again I am sure.
PS: I now have appt with Dr. Lenke - Aug 19th. OMG! Hope I can wait till then....

RitaR
06-03-2009, 08:15 PM
Well, I have to say, I took someone's advice on here, mostly because I am a newbie of sorts to this forum and already seeking advice I guess. I tried calling Dr. Lenke's office this morning around 9:00 and by 10:30 she called me back and made an appointment for me. I see him on Aug 19th, which sounds long ways off, but when you think about it, could have been lots further out, like November or December. More worrisome, however, is that he is currently scheduling surgery for February. OMG! But, she said they always move people up if they're bad enough and experiencing a lot of problems, so we'll just wait and go from there. She was very nice and sympathetic to my symptoms, travel distance, etc. So, if you can go by first impressions, I'm off and running already. :)
So, my hats off to whomever suggested I call the dr myself - I hadn't thought of doing that yet, but it certainly worked.
I'll be on here periodically, mostly looking for a sympathetic ear probably while I wait for my appt.
THANKS!

RitaR
06-03-2009, 09:41 PM
Just wondering here - can someone give me an idea how long they were in the hospital with this surgery? And, where did your family member stay while you were in the hospital? I'm assuming it's going to be a while before I can travel home after having surgery. Although knowing they do have drugs, but I am just not a drug person, if you know what I mean.... as soon as I can I'm off those goofy acting drugs. I hate the way they make you feel. I'd almost rather be in pain - well, almost... (tee hee!)

debbei
06-04-2009, 06:19 AM
Well, I have to say, I took someone's advice on here, mostly because I am a newbie of sorts to this forum and already seeking advice I guess. I tried calling Dr. Lenke's office this morning around 9:00 and by 10:30 she called me back and made an appointment for me. I see him on Aug 19th, which sounds long ways off, but when you think about it, could have been lots further out, like November or December. More worrisome, however, is that he is currently scheduling surgery for February. OMG! But, she said they always move people up if they're bad enough and experiencing a lot of problems, so we'll just wait and go from there. She was very nice and sympathetic to my symptoms, travel distance, etc. So, if you can go by first impressions, I'm off and running already. :)
So, my hats off to whomever suggested I call the dr myself - I hadn't thought of doing that yet, but it certainly worked.
I'll be on here periodically, mostly looking for a sympathetic ear probably while I wait for my appt.
THANKS!

Rita,

I'm so glad!! Persistence can sometimes pay! I was in the hospital for 6 days. When I was there, my husband stayed in the hospital guest house right across the street, which (in NYC) was a bargain at $100 per night. He wanted to stay close and not have to go home to NJ every night which distance-wise isn't far, but can take a long time to get back and forth.

I hated drugs too, but for me there was no question. I just needed some relief. It's not like the drugs I was on took all the pain away either; they just made it tolerable. Of course, over the weeks after surgery, the pain gradually decreased. Even though it's hard to believe that in the beginning, it's true.

RitaR
06-06-2009, 01:15 PM
I cannot even fathom if after surgery this pain is even some better. :mad:
I cannot walk for more gthan 10 minues without being in sheer agony. And, I know walking is a must to keep limbered up - but if it causes this much pain. What to do? It effects everything you do - everything you think. I long for those days when I had no pain and just forgot about even having his dreadful curve thing. Waiting until Aug 19th for my appt is going to be a very long time I'm afraid. I am sooooo glad I have this site to vent. Ugh! Anyone have any ideas of what they've done to make walking a litlte more tolerable? I can't even p repare dinner without being in sheer agony that by the tikme Im ready to eat - nothing sounds good if you're dying in pain.
Sorry, is this whining?:p

JenniferG
06-07-2009, 02:15 AM
I hesitate to stick my neck out here, but reading of your pain, I am going to suggest you try a magnetic wrap, in the meantime. I used to use one before my surgery and it worked. And I never expected it would. A friend talked me into trying it. I know many (including myself, once) would be sceptical, but it worked for me, perhaps it will for you too.

Considering the degree of your pain, you might be willing to try anything. The best ones are the non-rigid ones. They are like a wide piece of elastic with magnets sewn into it. They are held by velcro. They were also much cheaper than the rigid ones.

S4Sarah
06-07-2009, 11:59 PM
Have you tried Physical Tehrapy, CLEAR Institute, Spinecor or any alternatives to surgery yet?

pilar
06-09-2009, 06:46 PM
Hi Rita!
I'm new here too and it is wonderful.
I'm 30 years old and I wore a milwaukee too when I was 12 for about a year. It certainly was not fun. I'm going to make you fell better saying that I have a 95* curvature. And those chest pains that you have I have them too. You are NOT alone. And I'm soo happy that I am not alone too. I 'm contemplating surgery as well. In fact, I have schedule the surgery for sep 3rd. I'm just nervous and hesitant about it. I do not have leg pains or back pains (only lower back sometimes and chest pains) but I don't want to have any pains in the future, so that's why I will probably go ahead with the surgery. I'm scared because it is a complicated open anterior and posterior ( that is 2 surgeries), so I guess I will have to be in the hospital for lomg time.:(
I have my last appointment with my surgeron next week so we'll see.
Pilar

Pooka1
06-09-2009, 07:16 PM
Hi Rita!
I'm new here too and it is wonderful.
I'm 30 years old and I wore a milwaukee too when I was 12 for about a year. It certainly was not fun. I'm going to make you fell better saying that I have a 95* curvature. And those chest pains that you have I have them too. You are NOT alone. And I'm soo happy that I am not alone too. I 'm contemplating surgery as well. In fact, I have schedule the surgery for sep 3rd. I'm just nervous and hesitant about it. I do not have leg pains or back pains (only lower back sometimes and chest pains) but I don't want to have any pains in the future, so that's why I will probably go ahead with the surgery. I'm scared because it is a complicated open anterior and posterior ( that is 2 surgeries), so I guess I will have to be in the hospital for lomg time.:(
I have my last appointment with my surgeron next week so we'll see.
Pilar

I've only been reading this forum for about 18 months but I can't recall reading any testimonials from folks who had little pain before surgery coming out with much more pain long term. I think the surgeon would know about the stats on that.

Good luck.