Re: looking for help

From: Michelle Myrick (michellemyrick@gmail.com)
Tue Dec 30 19:23:18 2008


I completely agree that there is no "cure" for adhesions which is what I pointed out in my earlier email. My biggest message was to hope for others to "do their homework" and make sure they are getting a surgeon they are most confident in and not just take their chances with whatever surgeon is "assigned" to their case.

I was never involved in anything at CAPPS besides Dr. Redan and Cristine so I'm not sure how good the rest of the services are. But, Dr. Redan surely does his best and never makes any promises. I don't live in Orlando so I had to travel to see him. I only saw him once before surgery, while I was in the hospital and two follow-up visits but I am pleased with what he did for me.

Everyone is very different and it was only my hope to share another way of thinking about adhesions and the misery some deal with to potentially help someone new to the condition make wise decisions for themselves. It is a highly personal decision regardless of what is done.

Michelle

-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of sarah.wampler@yahoo.com Sent: Tuesday, December 30, 2008 7:34 PM To: Multiple recipients of list ADHESIONS Subject: Re: looking for help

At Tue, 30 Dec 2008, Michelle Myrick wrote: >Bravo, Michelle! Thank you for your testimony and I wish you continued
healing. Unfortunately, no matter who the surgeon is, sometimes adhesions cannot be "cured". Dr. Redan promises no such thing. Only that he will do his best to help adhesion sufferers. Fortuntately, with the formation of CAPPS, there is a team of pain mgt, psychology, everything someone would need. I understand that there are good doctors everywhere, I reccomend Dr. Redan not only because of his expertise, but because he does care. Thank you again Michelle for sharing your experience. I truly wish you all the best. >Hello all,
>There has been an ongoing conversation that I have been monitoring and
>reading over the past week or so. Everyone has their own view of what is
>best for adhesion suffers and we all respond differently. Some of us may
>have had the same or similar treatments but there are so many variables
that >come into play that it is all received differently. Below are copied and
>pasted some of the conversations to which I'm referring. One thing I must
>agree with is that having lysis of adhesions for the sole purpose of
>removing the adhesions is a waste of time and very dangerous since yes, it
>they tend to come back. However, a complete bowel obstruction or multiple
>partial bowel obstructions are life-threatening and therefore require
>surgery to remove the adhesions and regain normal bowel function. The
>important thing is to do your homework when you are not in crisis so
when/if >that day comes you have established your care with a reputable surgeon who
>understands the condition and is sympathetic to your situation.
>
>Advanced laparoscopic surgeons provide for the most realistic possibility
>for reducing the frequency of lysis in conjunction with seprafilm. The gut
>must remain in its normal environment to reduce the inflammatory response
>which promotes growth the adhesive tissue. Surgery - especially alone -
will >never be a permanent solution. There is no permanent solution to adhesions
>for those who are prone to them. It will always be a cycle. However the
>cycle can be slowed and the severity of an episode can be reduced if the
gut >can be lysed without laparotomy. In conjunction with surgery it is
important >to find a physical therapist who fully understands & specializes in pelvic
>pain with adhesions. The knowledgeable & experienced therapist will work
>regularly to keep the adhesions flexible and soft which reduces likelihood
>of complete obstructions. This is done with myofascial release techniques.
>The knowledgeable therapist can also introduce patients to a high volt and
>an interferential unit. These two units relieve pelvic floor spasms & pain,
>respectively, which is from where much abdominopelvic pain comes. Once
>adhesions have been lysed from the pelvic floor muscle wall and the
>connective tissues, the nerve endings are much more sensitive. In addition
>to the therapist one must also find a pain management physician who
believes >in the agonizing pain that an adhesion patient suffers - even in the
absence >of adhesions in the early stages following surgery.
>
>I have been in constant pain since I was 18 with the exception of a period
>from January 2003 to July 2005. I have had lysis performed twice since July
>2005. The second time by Jay Redan, MD. Dr. Redan is an advanced
>laparoscopic surgeon practicing out of Florida Hospital in Celebration, FL
>(an area of Orlando). Dr. Redan was mentioned by another writer on this
>forum and I agree that he is worth traveling for. I first met him a year
ago >and he performed surgery on me in February 2007. It was planned as an
>outpatient surgery for late February but had to be rescheduled to an
earlier >date due to progressive symptoms that indicated an obstruction was forming.
>I ended up in ICU for several days and required a partial colectomy &
>bladder resection because of the severity of my condition at that time.
>
>I have read someone on this forum saying "do not have surgery" for lysis of
>adhesions. And although I agree that if the sole reason to have surgery is
>for pain alone surgery can cause greater problems. That's what happened to
>me in 2005, but with a complete bowel obstruction death is imminent unless
>surgery takes place timely. I am rather pleased with the results of the
>laparoscopic surgery performed by Dr. Redan in February 2008. I have been
>on disability since September 2007 due to the amount of pain from which I
>suffer which has resulted in me taking large doses of two different very
>strong morphine's and dilaudid to survive everyday life. Since the surgery
>in February I have had a very long, slow road to get to where I am now,
>however, my quality of life is much better. I do not expect a 100% recovery
>at this point. I have had 9 abdominal surgeries, 5 of which were for
>obstruction due to adhesions. Each and every time I was found to have an
>amazing number of multiple partial small bowel obstructions with the final
>one involving the complete obstruction of the large intestine. I am, by no
>means, out of pain. I live with a pain level of about (on average) a 4-6 on
>a scale of 1-10. But, I am better now than I was a year ago. Soon, I will
be >returning to work anyway but on lower levels of morphine. I also have
gotten >a tattoo that helps remind me stay positive. The tat is a rising sun to
>remind me that, although even on cloudy days you cannot see it, the sun
>rises everyday; so to must I. Each day is a new beginning.
>
>I believe it is rather arrogant for an adhesion sufferer who has had
>multiple laparotomies to expect to be pain free and to continue to chase
>that hope with more surgery. However, the quality of life can be much
>improved if the individual remains positive, seeks physical therapy from a
>knowledgeable and experienced women's health specialist (see
>atlasphysicaltherapy.com and read the bio on Jeanette Micelotta for an
>example). The key is to actively participate in the improvement of your
pain >and not just wait for medication and surgeons to "make you better." I will
>be 43 day after tomorrow and since I was 17 I have suffered a great deal of
>abdominopelvic pain. Amazingly enough, when I was only 18 I had a
>laparoscopy which revealed I had scaring and adhesions already and I had
yet >to have my first abdominal surgery of any kind. My sister is now a
physician >because all those years ago she spend a great deal of time trying to
>research why I had so much unexplained pain and she was so fascinated by it
>all she went to med school. She's my hero!
>
>Surgery is not the answer to pain for those who have not been successful to
>remain adhesion free after several surgeries. But, do your homework and
>research to find an advanced laparoscopic surgeon with a successful track
>record and one who freely posts his/her CV or resume online (Dr. Redan
>does). Don't settle for the surgeon who is on-call at the time you end up
in >the ER for an episode of miserable pain that you can't get under control.
If >you surround yourself with a team of medical providers who communicate with
>one another and who are familiar with the condition BEFORE you need them
you >will be sure to receive only the best of care when the time comes that you
>are in crisis.
>
>For anyone in/around the Jacksonville, FL area the medical providers with
>whom I have found great success are: Dr. Anil George, primary care at 580
W. >8th Street, Suite 6009, Jacksonville, FL 32209 (904) 244-9470; Dr. Jeffery
>Caudill, pain management at North Florida Pain Center, 5851 Timuquana Rd.
>Jacksonville, FL 32210 (904) 778-5440; Atlas Physical Therapy, Women's
Heath >with Jeanette Micelotta, 12421 San Jose Blvd., Jacksonville, 32223 (904)
>292-0195 and of course, Dr. Jay Redan who can be contacted via the
>adhesions.org website and who practices at Florida Hospital in Orlando.
>These providers are very knowledgeable, compassionate and personable.
>
>Best of luck to all. Those of us who are in constant pain and struggle
>through each day must stick together and be a support to one another. I am
>here if anyone feels I can be a support to them. If you have read this
>entire message - even if you don't agree with me, then thank you.
>
>Happy New Year,
>Michelle
>
>-----Original Message-----
>From: "IAS Admin \(Tracy\)" <tracy.joslin@adhesions.org>
>
>Date: Wed, 24 Dec 2008 15:51:31
>To: Multiple recipients of list ADHESIONS<adhesions@mail.obgyn.net>
>Subject: looking for help
>From: dseda90@hotmail.com (dawn)
>Subject: Re: looking for help
>
>At Wed, 15 Oct 2008, Lesa wrote:
>>
>>Alan -
>>
>>I am positive your wife has adhesions from her surgery. The previous
>>reply to mine is correct, surgery is the only thing to get rid of the
>>adhesions BUT DON'T DO IT! I too believed that surgery (lysis of
>>adhesions) would help but it creates only more adhesions. Believe me, I
>>know what I'm talking about. Please read my story on the adhesions
>>quilt. I repeat - DO NOT HAVE SURGERY TO TAKE DOWN ADHESIONS - IT ONLY
>>CREATES MORE.
>>
>>There are ways to minimize the pain, I am have been on Oxycontin for the
>>past 6 years, it's the only way I can cope. I was ignorant and believed
>>my original surgeon (gynecologist) who told me surgery was the only
>>answer. I've had at least 10 lysis of adhesion surgeries and almost
>>died during the last one. I know that surgery, at least in this
>>country, doesn't work, it makes things worse. Until there is an
>>adhesion barrier approved to be used in the US, these type surgeries
>>don't work.
>>
>>I'll keep you and your wife in my prayers.
>>Lesa
>>
>>At Tue, 30 Sep 2008, Alan wrote:
>>>
>>>My wife had a hysterectomy to remove a grapefruit sized Uterine Fibroid
>>>2 years ago. She did not have Endometriosis but the Uterus was removed.
>>>The pre-op Ultrasound showed the fibroid against the large intestine and
>>>the bladder. She has had a lot of abdominal pain in the lower right
>>>(inguinal area) and her doctor does not think it is from adhesions. She
>>>says the pain is worse on the right but recently there is also pain on
>>>the left with a pulling sensation and some pain between them. The scar
>>>(about 6") is just below where the pain goes across the abdomen. The
>>>first 7 months after the operation she was numb in that area and
>>>partially numb for another 5 months. My three questions are can
>>>adhesions be caused from surgery if no Endometriosis was found? Can you
>>>develop Endometriosis after your Uterus has been removed? and can anyone
>>>recommend a doctor in New Hampshire or New England?
>>>Thank you so much!
>
>--
>That is a negative way to look at lysis of adhesions. Yes all surgery can
>cause adhesions to come back, but adhesion barriers have been approve in
the >USA only a few Dr are willing to work with it because it time consuming a
>tedious and they want to get in and out. with adhesion Barriers I have
been >able to go 5-6 yrs without surgery would have been longer had I not had a
>hernia. some get less some more. Dr Redan in Orlando Fla listed on this web
>site the CAPPS program listed is excellent. and worth traveling to have the
>surgery. as far as pain some still have a little everyone is different.
Pain >meds are a crutch for some they would rather take it then try to fix the
>problem. Some Dr are just not great surgeons. I have noticed that alot of
>people just do alot of complaining and just want to rely on pain meds they
>are and meant to be short time and addictive and no way to live. sometimes
a >positive attitude and Healthy living can help. The pain is real but it wont
>go away unless you try to fix it so if bad surgeries have had happened
>travel to the ones who have had success. pain free for a few years at a
time >is better than all the time. reality is adhesion will never go away
>permantently so enjoy the time between. living on pain meds is not
>enjoyable.
>
>-----Original Message-----
>From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
>Kelly Murray
>Sent: Tuesday, December 30, 2008 4:40 PM
>To: Multiple recipients of list ADHESIONS
>Subject: Re: looking for help
>
>What kind of surgery does this Dr. do?
>
>Two months is a short time. Maybe give it a few more months and let
>us know how you are. It's good news if after a few months you still
>feel good.
>
>I know there have been a lot of people that have gone to Germany and
>Pennsylvania (myself included) Some are pain-free and others are
>having the same old symptom's after a few months.
>
>Keep us posted how you are doing.
>


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