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Karen Ocker
02-24-2010, 01:19 PM
For those people who happily say they "are doing well" with large curves are in for an unhappy surprise.

When I had pre-op pulmonary function tests before my revision(30 Cervical, 80 thoracic, 40 lumbar) My results were 70% of normal. This is with doing Pilates and walking/hiking 12 miles a week. My revision gave me a 50% correction. I was able to breathe better after surgery when I resumed my exercise regimen but I was never able to overcome fully the lung restriction from my original deformity. The anterior approach, so necessary for my correction, involved cutting through my breathing muscles.

The last 5 months I was involved in the care of my terminally ill mom and was unable to keep up my exercise routine. Lately I noticed shortness of breath and excessive phlegm. My pulmonary testing showed my pulmonary function less than 50% of normal. Because of my ribcage deformity parts of my lungs to not get airated well even when I sleep. I need to get bach into a vigorous exercise routine and Pilates. Next month I go back for testing.

Moral of the story is: when the chest gets that deformed from large curves waiting too long can cause problems down the line even when surgery is hugely successful. You don't have to have pain to reach this point.

hdugger
02-24-2010, 02:47 PM
Karen,

Is it possible that the sugery itself decreased the lung function? I thought that was one of the issues with the anterior approach.

debbei
02-24-2010, 06:17 PM
I'm sorry Karen. Hopefully getting back to your normal routine will improve things. A little hard to do with all this crappy weather we've been having.

Let us know how you do. ((Hugs))

joyfull
02-24-2010, 09:16 PM
Hi Karen. I felt like your post was aimed at me. I hope I'm not in for an unhappy surprise. Hopefully, I will benefit from the minimally invasive side "anterior" approach, so that the chest wall doesn't have to be cut. My best wishes go out to you for your mom and for your own health. Joy

Pooka1
02-24-2010, 09:38 PM
Karen,

Is it possible that the sugery itself decreased the lung function? I thought that was one of the issues with the anterior approach.

I think that is correct but I think things are back to where they were within 2 years if I recall correctly. Karen is 7-8 years out.

Singer
02-25-2010, 08:02 AM
I'm sorry to hear this, Karen! How very scary. I hope a return to your workout routine will increase your capacity again...?

As someone else whose breathing muscles were cut in a long anterior incision, I can attest to its effect on lung capacity, although I suspect the issue has more to do with diaphragm elasticity. Since I'm a classically trained singer, I've always relied on taking deep breaths from the diaphgram and resisting the natural "deflation" that follows. Now I have much less control over that resistance so that I run out of air much more quickly when I'm singing a phrase, even after 2 and a half years of working really hard to get my mojo back.

Good thing singing has always been a sideline for me because if I were a career vocalist, my career would be over.

It's taken me a while to come to terms with the fact that Dr. B never mentioned the effect anterior surgery would have on breathing, and he knew I sang. When I asked him about it post-op, he said I'd get my normal capacity back in a couple of years, but that hasn't been the case. I've also researched this issue and can't find much about it except anecdotally. I've thought about getting a pulmonary function test but at this point I'd rather not know.

I'm happy with my excellent correction, BUT if I had it to do over again, I think I would opt for posterior surgery only.

Didn't mean to hijack Karen's thread but she really struck a nerve...

Karen Ocker
02-25-2010, 09:51 AM
The pulmonologist Dr. B used, Dr. King, mentioned that pulmonary function may or may not improve. He mentioned cutting through the respiratory muscles-this interrupts the nerve supply to the breathing muscles.

I have been able to hike in the Alps and have good stamina and I have been doing very well the last 7 years. With aging pulmonary function normally decreases. After I visited the pulmonologist, realized had forgotten to mention that I was recently exposed to floor sealer in my mom's home. The problem got started after that. We are preparing to sell her home, she passed Jan 25, and the animals ruined her floor. He gave me an inhaler to try and it seems to help.

That all being said, there is no way I could have done anything different in my case meaning: I COULD NOT AVOID THE ANTERIOR APPROACH AND NOT HAVING SURGERY WOULD HAVE LEFT ME A PHYSICAL AND RESPIRATORY CRIPPLE.
The mis-shapen thorax results in what's called, in medicine, "ventilation/perfusion mismatch". This means the air one breaths does not reach the blood supply in the lungs efficiently.
This is true whether one has surgery or not. That is why I encourage people to do something about their curves, if they are progressing, before they get too large. Once the chest is that deformed, straightening the spine, does not remove the deformity .

CHRIS WBS
02-25-2010, 10:13 AM
I would like to add that large lumbar curves can also impact pulmonary function. Most of my curve was in my lumbar spine and looking at my x-ray it appeared that my heart and lungs were safe. However, a surgeon pointed out to me that my diaphragm was being squeezed which ultimately would have a negative effect on my pulmonary functioning.

joyfull
02-25-2010, 08:37 PM
One of the reasons that I chose to go with Dr. Lonner is that I know he does the "anterior release" with a minimally invasive procedure, make two small cuts into the side. and then does the posterior part. I am lying flat on my stomach the whole time. Dr. Boachie spoke about anterior/posterior and then changed his mind and said the would do only a 4 hour posterior approach. His nurse, Lindy, said that if we decided to do more, it would not be possible that day. I know Dr. Boachie has a wonderful reputation but G-d willing, Dr. Lonner will come through for me. Chris and Karen, good luck with the breathing issues. All the best, Joy

dailystrength
02-25-2010, 09:02 PM
The mis-shapen thorax results in what's called, in medicine, "ventilation/perfusion mismatch". This means the air one breaths does not reach the blood supply in the lungs efficiently.
This is true whether one has surgery or not. That is why I encourage people to do something about their curves, if they are progressing, before they get too large. Once the chest is that deformed, straightening the spine, does not remove the deformity .
Hi Karen, Thank you for sharing that & your experience. I am glad you can still hike and enjoy life somewhat, and I hope it gets better as the fumes get out of your system.
I have a question: is there a test for the ventilation function? I mean, how would I know if I am experiencing a limited supply of oxygen? I am sure there must be a test can request. Also: if it is true whether surgery is done or not, then "doing something about the curves" could also mean more conservative methods if they result in reduced curvature/rotation? Again thank you, I appreciate your insights.

txmarinemom
02-25-2010, 11:10 PM
... if it is true whether surgery is done or not, then "doing something about the curves" could also mean more conservative methods if they result in reduced curvature/rotation?

Karen, first and foremost, I hate you're going through this.

dailystrength, I'd love to hear how you percieve one conservatively does "something about the curves" as an adult.

The matter here is an *efficacious* method that addresses severe curvatures. If you know of a proven "conservative" method that reduces curvature/rotation in extreme adult curves, please share.

Please also quote facts.

Pam

dailystrength
02-26-2010, 07:40 PM
dailystrength, I'd love to hear how you percieve one conservatively does "something about the curves" as an adult.

The matter here is an *efficacious* method that addresses severe curvatures. If you know of a proven "conservative" method that reduces curvature/rotation in extreme adult curves, please share.

Please also quote facts.

Pam
Hi Pam,

My case is no comparison to Karen's suffering, for sure. And she gets a big "thanks" for sharing her story as a warning to us non-surgical folks. And perhaps my question was one that only I can answer.

At 34/49, I am using exercise, PT, etc., under Surgeon recommendation. After major progression in the last 10 years (2 degree /yr) until it was caught, my curve has remained stable for the past year. I have gone off pain medication. Reduction would be nice but if I can manage fairly pain free with my curves, I will settle for that. I will go in May for my next follow-up. We shall see what the future "holds" :)

By the way, your correction looks wonderful. Thanks for sharing.

Karen Ocker
03-01-2010, 02:11 PM
The only sure way to assess breathing is having a pulmonary function test authorized by a pulmonologist.

I must add here that I have been living a perfectly normal, pain free life these last 7 years since revision- hiking in the Alps every summer--after a good warm-up.

I consider this last episode a temporary set back. I believe breathing the fumes from the new flooring in my late mom's house situation influenced the test results. I am much better since a steroid inhaler and resuming my exercise routine. This teaches me I must be vigilant to avoid noxious fumes and maintain an aerobic exercise routine because the ravages of aging are also a factor.

Any person with a significant scoliotic curve will eventually have these issues.

titaniumed
03-01-2010, 05:39 PM
Karen

Sorry about your mom.

Also, on the chemical exposure subject. Im about as funky as they get in that department. I guess it comes from working around it for so long myself. We have NOTHING toxic at work. I wont allow it.

Fumes from aerosols, cleaners and hair spray and just about half of everything sold at the supermarket, need careful consideration. I donít care what the manufacturer says, I treat it as toxic. Ive never sprayed any pesticides in my house, I know better. Insects hate fine powders. I use baby powder for ants.

I too, had restricted breathing. It was tested prior to my surgeries. I couldnít tell at all, but the machine didnít lie.
Ed

loves to skate
03-01-2010, 05:55 PM
Also sorry about your Mom Karen.

You also need to be careful if you heat your house by burning wood in a fireplace. Make sure to get your chimney swept every year if you burn wood a lot.

Ed, another good way to get rid of ants is using boraxo soap powder around the foundation of your house.

Sally

titaniumed
03-01-2010, 07:09 PM
Sally

Years ago, I lived at Lake Tahoe and burned wood. Its not any cheaper to burn wood, vs natural gas, and it creates a whole bunch of work. You also have to paint the inside often. Im currently not burning wood at all.

I donít have ants, but have a few spiders. We have black widows out here, but they donít bother me much. I will set them on fire before I spray any poison.

Ed