Sean from Pennsylvania - Dx 2003

[Elaine Anderson]

Hi Everyone,
My son was diagnosed with ASPS April, 2003. As many of you already know, he had an open thoracic surgery on his left lung during May, 2006 at Memorial Sloan Kettering in NYC due to a spontaneous pneumothorax (lung collapsed to 65% capacity, recognized immediately during a routine follow up). This was the same lung where an ASPS met (3 mm) was removed September, 2004 and a conclusive ASPS diagnosis was made by surgeon and lab at that time. My husband and I asked that during the May, 2006 surgery that all ASPS mets be removed while repairing the lung. Unbelievably, there was no evidence of ASPS in this lung; it seems to have disappeared from this area. Surgeon was shocked.

Sean is on a three month follow up cycle that includes a CT scan of his lungs, blood work, and a hands-on physical. He also had extensive pulmonary functioning tests that are normal (doctor said you would not know he had surgery). The recent CT follow up report stated post-surgical changes (scar tissue/a little hazy area). Sean still has discomfort in his chest at the end of a busy day. I suppose this is normal considering the magnitude of this recent surgery.

Best wishes to all,
Elaine Anderson
Unionville, PA

[Charity]

I think that is such a blessing that there is no evidence of ASPS in his lungs.Continued good health to your son. Charity

[Elaine Anderson]

My son recently had a followup. No evidence of ASPS. All bloodwork within normal range. We continue with three month followups.

[Olga]

We are happy for Sean and all of you, now he is going to have a good winter break, holidays and winter!

[Bonni Hess]

Dear Elaine,
Thank you for writing to share this wonderful news! We all share yours and your family's very special happiness and the strengthened Hope that the miracle of complete healing has somehow occurred in dear Sean's young body. We will continue to hold you all very close in our hearts and special caring thoughts , and will pray for continued GOOD NEWS! on all of Sean's future check ups and scans.
Sharing your great relief and joy with special caring and continued Hope,
Bonni Hess

[Elaine Anderson]

Sean had a followup sooner than anticipated due to increasing pain on his left side where he previously had the open thoracotomy. Symptoms included tight breathing, a swollen feeling in his chest, tingling, and numbness. He had these symptoms off and on since May, 2006 (surgery date). MSK immediately had CTs ordered. All lung scans remain clear; of everything!!! Sean was told the surgery had highly impacted his nerves, creating hyper-sensitivity. His followup was moved to four months!!

Sean then went to an another doctor (we went outside of the box because the pain continued) that specializes in musculoskeletal pain and injury. The speciality is osteopathic manipulative medicine (aligning muscles and bones totheir natural/healthy position). Sean's 4th, 5th, and 6th left ribs were "jammed." The doctor said his pain was directly due to the thoracotomy and would not have gotten better on its own. This awesome doctor began by aligning the navel with the diaphragm, then aligning the deep breathing muscles (causing some discomfort), then adjusting across the back, then collarbone, then eventually his hips and legs. Sean's breathing was instantly deeper and smoother, and he gained one inch in height because he was able to comfortably stand straight. This manipulative treatment took approximately 45 minutes and it was truly incredible to watch the healing change take place instantly. The doctor believed this one treatment would be effective, but would take eight weeks for complete natural restoration.

Also, Know that I think of each of you often and appreciate each person's message. Stay strong!!

Elaine

[Yosef Landesman]

Dear Elaine,

Best Wishes to Sean.
I wonder if your osteopathic manipulative medicine specialist recommends any type of physical activity as yoga, pilates or other to complement his body manipulations?

Yossi

[Brittany Hess]

That's great news!!! I'm so happy that he's doing so well and things have gotten straightened out (no pun intended!)

[argonaut]

I have been talking to a friend who has similar symptoms from lung surgery. Does this treatment have a specific name, or I can I get the Dr.'s name for her.

[Elaine Anderson]

It's great to hear from you...

In answer to your questions...the doctor's service is called osteopathic manipulation. There are several diagnosis listed on the office visit receipt: tendosynovitis (ribs), thoracic strain/sprain, somatic dysfunction thoracic, somatic dysfunction pelvis, somatic dysfunction ribs, somatic dysfunction sacro, somatic dysfunction cervical, somatic dysfunction upper ex. (?). The doctor explained during this treatment that the alignment of the deep breathing muscles caused a natural opposite reaction in the lower body (causing a further twisting "unalignment") that required the lower body manipulation also.

The doctor did not recommend any other therapy. He said that another open thoracotomy or a fall on the rib cage could cause this problem again. And the doctor made "mention" about the placement of the chest tubes, which was the area with the greatest hyper-sensitivity.

I actually went to this doctor previously because of a "yoga injury." (lol) I was trying to do one of the positions that take years of yoga practice, could not complete the move, and the instructor pushed my body into the position. I immediately felt pain and needed treatment. The doctor's name is Dr. Lawrence Bellew, DO, 1202 Society Drive, Claymont, Delaware, USA . He is Board Certified.

Also, this office visit cost $200 that will probably not be covered by our insurance (and we have excellent insurance). I don't know the rationale behind the insurance company denying this type of procedure. It was money well spent.

Best wishes!

[Ivan]

In my opinion, many (if not all) of the symptoms you described are purely psychological. Stress, subconscious knowledge of your own condition, etc. I experienced this myself. And the relief is such as well. It can be as easy as going for a run and seeing that YES, you CAN breathe and NO there is nothing wrong with your breathing except your imagination.

I walked around for half a day with a completely collapsed lung feeling NO shortness of breath whatsoever. It just hurt like hell. I think there is no physical reason why your son would feal a shortness of breath with 2 working lungs.

But I think that in a situation like this, ends justify the means. So, if $200 buys happiness, then why not.

What did Sean do for post-surgical recovery?

At the very minimum, I think it should include first gentle stretching of the incision area, and later exercise of the muscles there (bench press, pull-ups, sit-ups should roughly cover thoracotomy) to bring them back into shape. Augmented by first walking and finally running. Swimming crawl is also great: you are forced to use upper lung (your stomach is stretched flat) - it was very hard when I first tried it. Completely back to normal now. I think if Sean does some of these common sense things, he will NOT feel any symptoms as described anymore.

Does the phrase "a natural opposite reaction in the lower body" make any sense to you?

[Elaine Anderson]

Thanks for your perspective. I think the strength of this website is that each can provide his or her unique experiences. The procedure I explained is in "non-medical and non-scientific" language (except the diagnosis listing), so I'm sure it may sound confusing. During this treatment, I was able to watch the physical alignment improvements as they were occuring during each manipulation. This experience would be similar to watching a severely fractured bone reset in place or a dislocated shoulder popped back into place, and seeing the immediate physical alignment/improvement in the person.

Best wishes!

[Brittany Hess]

Hi Elaine! I just wanted to reiterate how happy I am that Sean is feeling better, and his pain subsided. I know that a lot of times, we as cancer patients have pain or wierd feelings in areas that most doctors and people just push aside as if they're not real problems. I am one of the most limber people that I know. In fact, I was a gymnast for 12 years, and my nick name was "gumby". So trust me, I do plenty of breathing and stretching excercises. But ever since my first thorocoscopy five and a half years ago, I've had a pain in my lungs that comes and goes. When I take a deep breath (only sometimes), it feels like something is slipping in my rib cage or something. It is kind of painful, and it kind of makes you a bit short of breath. This is a very real pain/feeling. I have talked to many people who have had lung surgeries, broken ribs, etc (some cancer, some non cancer related) who have experienced similar feelings as mine. I also work at a hospital, and see this kind of thing right in front of me in my patients. I agree with Ivan in the fact that a lot of this cancer fight and pain control is mind over matter. I'm a huge believer in this. I know that's what has gotten me this far. But, not to discount real pain. I believe Sean had a real issue here. I don't think that anyone can tell you if a pain is real not, unless they are in your exact shoes. I'm so happy that Sean is feeling better, regardless of how he got to this point. The neat thing about this world we live in, is, everyone has the right to do whatever treatment they feel neccessary. If I continue having my pain, I might just look into that same treatment. Thank you for the update Elaine, tell Sean hello for me. Thank you for the input as well, Ivan. I will definitely look into those excercises you mentioned. Keep up the good fight ALL!!!
~Brittany

[Elaine Anderson]

Sean recently had a followup and the results/scans remain CLEAN per his oncologist. He is to return to Sloan-Kettering, New York City in three to four months for a followup. Sean has never had radiation or chemo for treatment. Sean has had four surgeries: primary tumor excision (March, 2003), surgery to estabish a wide cancer margin which included sentinel node mapping (no ASPS found) (May, 2003), VATS as a diagnostic surgery to confirm mets to left lung and removal of 3-4mm ASPS tumor (lab confirmed) (Sept, 2004), open thoracotomy due to spontaneous pneumothorax, left lung (May, 2006). During the open thoracotomy, there were NO ASPS mets in his left lung!!

[Elaine Anderson]

I am thrilled to share that Sean's October, 2007 followup report from Memorial Sloan Kettering is normal. His CT scans remain "clean" and his pulmonary functioning and blood work remains normal. His next followup is in six months!!!