Helen’s survivor story

Helen is our moderator of the adhesions message board forums!

 

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Posted Tuesday, April 14, 2009 @ 02:11 AM   >> WISE CHOICES HELPED ME SURVIVE ARD FOR THE PAST 39 YEARS!!

No one deserves to experience what I did in my search for a diagnosis I could believe and accept!!
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Education is the very first step when seeking help for adhesion related disorder (ARD). I know because it took years of searching before I finally found information that led me to credible information that helped me find the endometriosis specialist, who told me a diagnostic laparoscopy is the only diagnostic test capable of confirming the presence of adhesions and/or endometriosis.

I agreed to have a diagnostic laparoscopy… and on August 01, 1997 I was diagnosed correctly "for the very first time in 27 years"!! It was the laparotomy I underwent in February 1970 that had caused massive adhesions to attach my omentum to my abdominal wall… as if these two surfaces had been bonded or glued tightly together!!

I am personally aware of only six surgeons — two in Germany and four in the United States — who are specializing in performing adhesiolysis procedures. To qualify as adhesion specialists, these surgeons have logged thousands of hours in performing very difficult, time-consuming, risky laparoscopic procedures. These six surgeons have earned the title of being known as the best adhesion specialists in the world.

Based on my personal experience of having had surgery performed by both adhesion specialists from Germany — Dr. Matthias Korell (November 2000 and January 2002) and Dr. Daniel Kruschinski (July 2003 and January 2006) — both adhesion specialists provided me with the best chance to become as free as is possible from the chronic pain caused by adhesions. 

… Both adhesion specialists from Germany are very skilled and experienced laparoscopic surgeons.

… Both of them apply SprayGel (an adhesion barrier) at the conclusion of their surgical procedures. SprayGel was approved by the European Union late in 2001. [Note: SprayGel has NOT been approved by the FDA in the United States!]

… Both adhesion specialists perform a Second Look Laparoscopy (SLL) about 7 days after the initial surgical procedure. [Note: Surgeons in the United States do NOT perform SLL procedures.]

… Both surgeons have been doing research for many years.

Most importantly, both Dr. Korell and Dr. Kruschinski treat their patients with the kindness and respect that every patient is entitled to.

There are no guarantees!!

Why can't adhesion specialists guarantee the results of their surgical procedures… including adhesiolysis procedures?

… There are no "long-term studies" available concerning the special surgical techniques these adhesion specialists are currently using. 

… NO two victims of adhesions present to their surgeon with the same kind and amount of adhesions.

… Not every adhesion-sufferer's adhesions are located in the same place!! The location of a patient's adhesions — and the internal organs involved — can affect the outcome of an adhesiolysis procedure. 

… It is also a well known fact that NO two people heal alike… and this can definitely affect the amount of healing that takes place.

Let me reassure you…

Your best chance — to become as free as is possible from the chronic pain caused by adhesions — is to seek the help of an adhesion specialist, who specializes in performing laparoscopic adhesiolysis procedures.

Considering my personal experience as a victim/survivor of ARD for the past 39 years, I cannot over-emphasize the importance of learning as much as you possibly can about adhesions and adhesion-related concerns. If you are a victim of ARD, it is also very important for you to seek support.

If you can't seek the help of an adhesion specialist, then seek the help of a qualified pain specialist. Pain specialists are usually associated with pain management centers.

Are you aware that many doctors — while still students in medical school — were not required to complete a course in the study of chronic pain? Unfortunately, that is true!!

Now, perhaps you will begin to understand the frustration you've had in finding a doctor, who will prescribe the right kind of medication that will relieve the chronic pain you are experiencing as a result of adhesion related disorder.

If your doctor did not receive the training needed to properly prescribe and titrate narcotic pain medications — such as OxyContin — this could cause a problem for not only you… but also for your doctor!

The Drug Enforcement Agency (DEA)

As if that isn't enough frustration for you and your doctor to deal with, the Drug Enforcement Agency in the United States is making it very difficult for doctors to prescribe drugs, such as OxyContin… even though narcotics are one of the most effective medications for relieving the chronic pain that so many victims of ARD are having to endure.

When doctors prescribe opiate drugs (narcotics), they have to be very careful; because if they do not follow the protocol for prescribing narcotics, there is always the real possibility that the DEA will be "breathing down their neck." Doctors are very aware of what can happen when the DEA steps in; because the DEA has not only caused some doctors to lose their license to practice medicine — but some doctors are also having to serve time in prison.

Yes, the DEA can make it very miserable for doctors, who are only trying their best to prescribe medication that will help to ease their patient's chronic pain.

Undiagnosed chronic pain is a hallmark symptom of adhesions.

… Education is the very first step!!

… A diagnostic laparoscopy is the only diagnostic test that is capable of confirming the presence of adhesions and/or endometriosis!!

… Adhesion specialists are the best qualified surgeons to perform difficult, time-consuming, risky adhesiolysis procedures!!

There are many doctors throughout the world who tell their patients: "Adhesions do not cause pain". The knowledge that you gain by educating yourself about adhesions and ARD will be there to help you make an informed decision before you are talked into having an unnecessary surgical procedure by a surgeon, who is NOT qualified to perform an adhesiolysis (surgical procedure).

Your knowledge about adhesions — and everything related to ARD — will enable you to determine if your doctor is telling you the truth about adhesions. If not, then it's time to search for a doctor who will listen to you and treat you with the kindness and respect you deserve!!

Make an honest effort to become thoroughly informed!!

In Friendship,

Helen D.

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Posted Sunday, April 3, 2005 @ 11:28 AM

Helen, 
I know many people benefit from your on-going work in providing information for victims of ARD.

Thanks to you many can easily research the information they need and make an informed decision.

Cheers to you! 
Karen

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Posted Sunday, April 3, 2005 @ 04:06 PM

Dear Helen, 
You deserve a medal for the work you have done for adhesion sufferers. For years now you have unselfishly sought information and posted it to the site. You have also been the victim of negative mis-information and for that I can only hope that the world will right that wrong. Take care and know that there are many people out here in the "real world" who have been helped by your cyber-world expertise.

With kindest regards, 
Sally Grigg

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Posted Sunday, April 3, 2005 @11:12 PM

Dear Helen, 
I would like to join everyone in saying "Thank you!!!" for everything you do for people caught in the vicious circle known as ARD. I am only one of the many people you have helped, not only by your tireless research, but also your knowledge, compassion and that always available shoulder for us to cry on.

Through you I learned how important it is to learn as much as possible about ARD so that I could not only make informed decisions about my healthcare, but also I am able to know when someone is trying to hand me a load of bull. I can't tell you the number of times I've had to give medical professionals a crash course in 'Adhesions 101'!! But isn't it nice that I can? The credit goes to you for showing me the strength I needed to do that, and to Dr. Kruschinski for giving me the chance and the ability to help others do the same. A big part of the reason I'm still here is because of the two of you, and of course my wonderful family!

Thank you for bringing hope to so many that suffer! You make this world a better place for us all…Keep up the good work!

Love, 
Lisa Graven

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Posted Monday, April 4, 2005 @ 03:44 AM

Dear Helen, many times I have told you HOW MUCH you do for adhesion sufferers and for doctors to educate themselves about adhesions. I myself went many times to your library to read about all kind of things.

Your WWW reasearch is outstanding and I am grateful to you for spending all the time helping us to have all this information on our site.

THANK YOU 
——————– 
Daniel Kruschinski, MD) 
EndoGyn.com, Adhesions.de, Hysterectomy.de, Fibroids.de, Endometriosis.de, gasless-laparoscopy.com

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Posted Monday, April 4, 2005 @ 11:22 PM

Dear Helen, 
Just to let you know, whenever I see a new entry on board, I jump on and read it, even if it doesn't pertain to me. I decided if you spent the time researching it, then that information is worth knowing about. Your caring goes deep in the heart… thanks

Connie

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Posted Tuesday, April 5, 2005 @ 11:34 AM

Hi Helen! 
I just want to say how much I have appreciated reading all of your articles. Just when I think that I am not finding info on a subject, I am always lucky enough to find it through you. Thank you for all of your wisdom, and your never-ending research, and for personally answering some of my questions and for giving me such excellent advice. God Bless you Helen, you are a Godsend

Cheryl D. 

[Edit by Helen D. on Sunday, April 19, 2009 @ 05:29 PM]

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"It is a paradox of our time that those with power are too comfortable to notice those who suffer, and those who suffer have no power. To break out of this trap requires… the courage to speak truth to power." 

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Posted Friday, April 8, 2005 @ 12:03 PM   

>> A LAPAROTOMY IN 1970 CHANGED MY LIFE FOREVER!!!

It was the laparotomy (open abdominal) surgical procedure I had in 1970 that changed my life forever!!!

It took 27 years of searching before I finally found information that helped me find the endometriosis specialist, who listened to me, believed me, and then told me a diagnostic laparoscopy is the only diagnostic test that is able to confirm the presence endometriosis and/or adhesions!!

Over the span of 27 years (1970-1997), I had been evaluated by many, many doctors… and ALL of my 
diagnostic tests were consistently within normal limits.

Since my diagnotic tests were always within normal limits, doctors told me…

* My symptoms were functional in origin.

* My pain was being caused by stress.

* It's "all in MY head " (or something similar).

* An allergy was causing my pain. 
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When I tried to explain my symptoms to one doctor, he started laughing!

Many doctors tried to reassure by stating there was nothing wrong with me… even though I continued to experience unrelenting pain.

Some doctors told me my chronic pain was being caused by irritable bowel syndrome (IBS)… but I did not have the classic symptoms of IBS (alternating constipation and diarrhea)!!!

Some doctors told me to seek an evaluation at a mental health clinic… implying I was mentally ill.

Since my diagnotic tests were always within normal limits, doctors NEVER gave me a prescription for pain medication!!

Instead I was given prescriptions for muscle relaxants or tranquilizers. NONE of those medications helped to relieve the chronic pain that that had taken over my life!!

Many doctors told me I would have to "learn to live" with my painful condition.

In 1992, when all of my diagnostic tests were within normal limits, the head of the gastroenterological department at the Mayo Clinic (in a very angry and rageful voice) told me "I was wasting their time!!" Not only had that 
doctor verbally abused me… but his horribly insensitive outburst humiliated me; because other doctors were present in the room!! 
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Only by thoroughly educating yourself about ARD will you be able to make an informed decision about the kind of care you will receive from your doctor.

It's never too late to start educating yourself!!!

In Friendship, 
Helen D.

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Posted Sunday, January 11, 2009 @ 01:43 AM   >>WHAT I HAVE LEARNED ABOUT ADHESIONS AND ARD

Updated: January 10, 2009

What I have learned about adhesions and ARD

It was my constant search for information – following a laparotomy in 1970 – that eventually led me to an endometriosis specialist, who listened to me and believed me. Based on my symptoms, he told me my problem with chronic pain sounded more like adhesions than endometriosis. It was then – for the very first time – I was told a diagnostic laparoscopy is the only way adhesions can be diagnosed. I had never been offered a diagnostic laparoscopy!!

I was scheduled to have a diagnostic laparoscopy on August 1, 1997. Before the surgeon could access my abdominopelvic cavity, he was faced with a very difficult problem. He had to perform an adhesiolysis before he could proceed with the diagnostic laparoscopy.

Massive adhesions – from the laparotomy in 1970 – had tightly bonded/glued my omentum to my abdominal wall…the entire length of the laparotomy incision and about two inches on each side. My surgery was supposed to be Same Day surgery; but because of the extent and complexity of my adhesiolysis, I was kept overnight in the hospital on intravenous antibiotics and pain medication.

Finally, I was given a diagnosis I could accept. I was not in need of a mental health evaluation – as I had been told so many times!! I did not have psychoneurosis!! I was not a hypochondriac!!

You may find it hard to believe; but it had taken me 27 years to finally learn the true cause of the chronic pain that had dominated my life. I can't stress enough how important it is to learn as much as you possibly can about the medical condition that's affecting your life!!

With the knowledge you gain, you will be able to recognize if your doctor has the same understanding about ARD as you do. ARD is so poorly understood by the medical profession; and there are far too many doctors who don't believe – or won't admit – that adhesions can cause pain!!

If all of your diagnostic tests are consistently negative or normal for abnormal pathology, it is possible that adhesions may be the cause of your pain. As I said previously, a diagnostic laparoscopy is the only way adhesions can be diagnosed.

"Knowledge gives you strength. Knowledge gives you courage. Without courage there can be no progress. Without progress there is no solution."

ARD is not recognized by the medical profession as being either a disease or disorder!! As a result, surgeons are very poorly reimbursed by insurance for adhesiolysis procedures – especially for the amount of time it takes to complete a lengthy, very difficult and risky adhesiolysis procedure. Consequently, very few surgeons are willing to perform adhesiolysis procedures!! However, if the patient is experiencing a complete bowel obstruction, this becomes an emergency situation – and the surgeon has no choice but to operate!!

You will learn there are only two adhesion barriers currently available in the United States: Interceed and Seprafilm. The FDA has approved the use of these adhesion barriers for open abdominal procedures (laparotomy) only!!! Only an informed doctor will know if adhesion barriers are available. A doctor, who is not aware of adhesion barriers, will not have the skill and experience needed to apply these adhesion barriers correctly.

Unfortunately, neither adhesion barrier is 100% effective!! Each barrier has its own problems. Seprafilm is brittle and is difficult for the surgeon to use. When moistened, Seprafilm becomes sticky and very difficult for the surgeon to apply. Interceed will not be effective if any amount of blood is left within the abdominopelvic cavity. Since these barriers are not consistently effective, many of the best surgeons do not use adhesion barriers.

In November 2001 SprayGel Adhesion Barrier was approved by the European Union for use in laparoscopic surgical procedures. Currently, SprayGel is being used in Australia, Europe and the United Kingdom – and with very encouraging results!!

The purpose of an adhesion barrier is to prevent the formation of adhesions. Adhesions are known to form within three hours following a surgical procedure. This completely natural and normal process is how the human body heals and protects itself following a surgical procedure!! Adhesions continue to form for up to 7 days!! After 7 days – and as they mature – adhesions gradually begin to shrink and become more dense.

If adhesions have attached any of the internal organs to the peritoneum, this will cause pain!! If adhesions have attached the bowel to the peritoneum, the peristalsis of the bowel will pull or cause a twisting action on the peritoneum. The peritoneum has a rich supply of nerve endings – and the continual peristalsis action of the bowel on the peritoneum will cause these nerves to become chronically irritated and inflamed. This constant irritation and inflammation on the peritoneum will cause PAIN!!

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Posted Monday, June 5, 2006 @ 05:31 PM   >> MEMORIES MADE WHILE AT SELIGENSTADT, GERMANY

Memories made while at Seligenstadt, Germany
http://www.endogynserver.com/cgi-bin/210/cutecast.pl?session=PO34YsE0QdCoI8xdhZxh2ymjW6&forum=2&thread=25

Hi Everyone! 
I thought it would be wonderful to talk about our trips to see Dr. Daniel and how captivating and charming the city was. If you had a question or a problem the apartment was next door to the EndoGyn offices. There was always someone willing to help. I was surprised and happy to find that so many people spoke English. The Emma Klinik is a state-of-the-art hospital with a very attentive staff. I loved the city… from the cobble stone streets to the bakeries. The entire trip was much easier than I had expected. Dr. Daniel is the kindest and one of the most experienced doctors in this field. He is helping people to get their lives back.

Thank you Dr. Daniel. 
Kathy 
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Kathy, Please tell me how you were able to see the city? After surgery I can't move!!!!

Connie 
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Hi Connie,

From one New Jerseyan to another – I'm so happy for you that you've decided to see Dr. Kruschinski. Rest assured, you will be in the best of hands. Dr. K. is so dedicated to helping his patients and I know you'll see this for yourself when you meet him. My experience in Germany was incredible and one I'll never forget. It was more like a vacation, despite having two surgeries while I was there. Along with my adhesiolysis, I also had a hysterectomy. I was amazed that I was up and walking into town four days after surgery. I continued to go, go, go for the rest of the trip (Dr. K. and Michaela will attest to that). Don't worry. You'll be up and touring before you know it.

Deb 
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Yes Connie….I agree with Deb. After my previous surgeries, I was in bed – but this time I was in town and shopping. There were lots of benches along the way so I could sit down at any time. Dr. Daniel makes it easy!

Kathy 
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Kathy…

Great idea! Big cheers to the chicken lady… Melissa and I had roasted chicken quite often while we were there… we fed the ducks behind the flats… walked downtown many times… enjoyed seeing the unique burial grounds… enjoyed watching the "laid back" lifestyle… here seemed to be no hustle and bustle like we are use to, as people are out roller blading, bicycling, walking, eating ice cream… women shopping with their wicker baskets in tow, outside dining (very popular)… we found a restaurant that made a wonderful trout… became one of our favorite places… and in the flat we watched lots of DVD's thanks to Miranda, Melissa's little sister… she fixed us up with a lot of movies and we were glad to have them!

We also would run to answer the phone on the wall when we would hear a ring and then many times realize it was the door… (both sound very much alike)… and Melissa spoke every day of going HOME… lol… Once the second look (surgery) was over….. she was ready to head out… was missing the rest of her family and her pets… Dr. Kruschinski chose a wonderful location for his office and apartments… it was the best!… and within walking vicinity of anything you needed.

Karen

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Dr. Kruschinski's remarkable talent, gasless laparascopy, and SprayGel gave my daughter back her life!! Thank you Dr. Kruschinski!! 
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Hi Kathy,

I agree good idea! I think we are all looking for a place to start this board chatting.

Seligenstadt is the kind of charming European village that we've all seen pictures of. It just draws you out, to walk around and see what wonderful little treasures are around the next corner… We walked all over, day or night!

There are alot of wonderful restuarants scattered all around. We ate out alot, since when we went there were no patient's apartments and we stayed in a hotel right on the Main river. You may have walked by it…the Maintresse Hotel? right by the ferry dock… The apartments were just being built but I knew exactly where Daniel meant when he told me of the new apartments… the one with the glass house on top, along the banks.

I loved the how the path way went all along the river, no big houses to block the view! We would just keep walking and walking and forget that I also had to make it back..LOL!

The whole atmoshere just invites walking, and when you feel so good after surgery you feel like you don't want to miss anything! And I had to keep up with my husband!!

The market place on the weekends was a must see, vendors with everything from antiques to fruit,to flowers(my favorite, I had to get some for our room),cheese, you name it! And of course authentic German Brats!! Nothing compares!

The whole experience is amazing!! It is nothing like what you would expect a trip out of the country for surgery to be!! It was truelly like a vacation, and we owe that to Daniel for making sure we all enjoyed our trip..

We did alot of sightseeing by train, Frankfurt twice, Hannau for a garden show, Mainz… Did anyone else make trips by train? 
If anyone is interested in seeing pictures of Seligenstadt, you can find them on www.Endogyn.com

Lisa 
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Connie, I was able to walk all over after surgery. I think it helps to walk as much as possible after surgery.

Kelly 
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Were you all on pain meds after surgery that's why you were able to walk everywhere… ???? OK good I'll pack clothes instead of PJs

Karen 
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Good mention with the DVD's Leon is trying to get a couple… mention the resturaunts name that you found good food… can you fish by the river… ??????? You went by train to Franfurt right after surgery… ???????What am I hearing… Dr. K .will I feel that good afterwards??????

Connie 
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Dear Connie,

Hi, its Sally. The village is beautiful and because Daniel does not use carbon dioxide you do feel better than you usually do after surgery. However, I was a "horrid" patient. By the time I got there, I was half dead. I was in a wheel chair, was all puffed up with bloated toxicity. I was in a very bad way and had been on heavy narcotics for years in addition to all the surgeries that gave me collateral damage.

So I did not get up and walk around. I went off my meds, had withdrawal, was nasty to everyone. I had lost my muscle tone and even though I did not feel the adhesions, I just could not believe at first that I was adhesion free. When I went for my second look, and there were no adhesions, I changed my tune immediately. It was the most incredible feeling in my life. I was going to live and without all that pain. I grinned from ear to ear. By then it was time to go home.

Then as you know, after I got home and was starting to get back to my life, my appendix burst. So forward three months and I'm back in Germany. Even though I did not have a completely successful second surgery because of the massive infections and the general state of my abdomen and the number of adhesions, at least the second time I did walk around and see the shops, the river, the ducks and beautiful white swan.

So don't be surprised if you feel like getting up and walking around. But if you can't you can't. Nobody could be more "anti-social' than I was at first. Well, on second thought, maybe they could. LOL What I'm trying to say, is that do what you want. If you need to "hybernate" that's your choice. But there are beautiful things to see quite close and lots of benches.

Good luck, 
Sally 
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we also rode the train. Had a nice college student that spoke English that helped us. Instead of going to her destination, she traveled with us to help us. We were able to find our way back in the evening.

Kelly 
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Hi Connie,

If everything runs smoothly, you will be up and walking on day 2 after surgery without any special medications, maybe you will need a suppository of Ibuprofen sometimes.

We have now around 25 english DVD's, all excellent, new ones and some lovely ones, thanks to Karen and Deborah, who sent them to us.

Yes, you could fish by the river, I only don't know if you need a permission, but I think no, I might ask…

Yes, you will feel that good afterwards !!!!!! If the surgery will pass without complications, I will do my best, but in some of the cases with many laparotomy surgeries, complications could occur. I'm saying this, not to be disappointed, when it happens.

Regards 
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MY NAME IS LIZ (HAD SURGERY WITH DR. K 6/6/03 AND 6/13/03)… AND I TOO WILL ATTEST TO THE FACT THAT YOU DO GET TO DO SOME WALKING INTO TOWN AND SIGHT SEEING. THE LITTLE TOWN OF SELIGENSTADT IS JUST BEAUTIFUL. WE ALSO HAD OUR SHARE OF THE ROASTED CHICKEN FROM THE CHICKEN LADY.

I HAVE HAD MY SHARE OF SURGERIES BEFORE THIS TRIP (7 IN LAST COUPLE YEARS) AND I WAS NOT EXPECTING TO BE UP AND ABOUT AND WALKING INTO TOWN 4 DAYS LATER. USUALLY IT WOULD TAKE ME MORE LIKE 5-10 WEEKS(DEPENDING ON WHICH SURGERY) TO GET GOING.

I WAS SKEPTICAL BUT IT WAS MY ONLY HOPE TO GO TO GERMANY. I AM GLAD I DID. I AM STILL RECOVERING BUT AM DOING A LOT BETTER IN COMPARISON. YOU WILL BE DOING GREAT AND WILL BE AMAZED AS WELL.

DR K. IS WONDERFUL AND YOU ARE IN GREAT HANDS.

TAKE CARE. HAVE A GREAT TRIP. WILL BE PRAYING FOR YOUR FAST RECOVERY AND AN ADHESION/PAIN FREE LIFE. WHAT A CONCEPT!

Liz 
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Hi gals,

All these stories bring back good memories. I was walking soon after surgery also, and trust me when I say… no pain after surgery… swollen and a little sore. But after all the pain before surgery, takes a lot to call something pain again. I did drink all the water Dr.Kruschinski told me to and did walk soon after surgery… just did what the doctor told me to do.

The river traffic is fun to watch and the ducks and swans. You will find a lot of people, young and older ride their bicycles. No doubt the chicken lady has good chicken. Hope someday to go back for a visit. My life is as different as night and day, so busy, difficult to find time to post.

Shawna hope you will soon be back and another happy advocate and patient of the good doctor. More later, must run.

Love Carolyn

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