Re: Dr. In Pennsylvania - Question

From: Debbie Soder (dsoder2003@yahoo.com)
Sat Jul 12 13:40:13 2003


Hi Deborah! Thanks for responding! I hope your therapy works. I'll pray for you. As for me I don't know which way to turn. I'm consutling with yet another surgeon on Mon. in my area (N.J.) Dr Yieng in Ridgewood. He's supposed to be informed re: adhesions and specializing in laparoscopy/laparotomy. He wants to see my x-rays of my fibrous uterus. The theory is that if he's going to take out adhesions, maybe he should remove uterus as well because that may have to be done eventually anyway, so do it all at once to avoid multiple surgeries and more adhesions. I'm afraid to do anything, because psychologically my last surgery was so hard on me that it almost pushed me over the edge. I almost committed myself a couple of times. Have no one to care for me while I recuperate except my daughter who works 12 hr days. Sorry for being such a bummer but this is where I am right now. Is it possible that since it's only been 2 mos since the surgery things will get better and i should give it some time? 6 mos, a yr? Don't know how long I'll have medical benefits either. Any input again, greatly appreciated. Debbie Steenbeke's Office <office@steenbekes.com> wrote: Hi Debbie, my name is Deborah. I am so sorry to hear all you are going through. I am 36 years old and have some of the same problems you are. As you know there are now sure answers for us that are suffering from ARD. It seems different procedures work for some and not others. Your laparoscopy in 88 could have started the adhesions and the appendix surgery may have made it worse. From what I know from my doctors all people get adhesions from surgery, however only some of us suffer from such severe pain. Not resting or running from doctor to doctor I don't think made it worse, it would have happened anyway. (I am not a medical professional, this is just what I have been told over the past 15 years of going through this). Adhesions can reach the bladder, and anywhere inside the abdominal region, even the spine. Unfortunately you can get worse over time. I have had surgery almost every year for the past 15 years. In the beginning I would get relief for a year at a time and then it decreased each time. I had a total abdominal hysterectomy 8/02 and got no relief - I am actually worse. This doesn't mean it won't work for you. I am now taking Effexor and Trazadone for pain and depression, and 5 percocet per day to manage my pain. I also recently started physical therapy in the urology department and am having great success. I know my adhesions are now on my bladder, intestines and in my rectum. I do not want to have another surgery at this time and my pain management docotor suggested this therapy. The therapist herself suffered from the same pain I do for 10 years and is now able to live life without meds and in no pain. I am going to give this 3 months and if I don't see any improvement I am going to consider surgery again.

Upper GI, cat scans, ex-rays, and ultrasounds can not see or dectect adhesions all they can do is rule out other stuff. From your symptoms it certainly sounds like you have adhesions bad, but other things can be going on. I would suggest you have the Upper GI just in case. My insurance required I do all the required tests just to rule out everything else.

Sorry I haven't provided you with any answers to solving your problems, I have found there really are none, I too am just looking to improve the quality of my life.

I have found sleeping with a few pillows under my legs helps ease the pain at night, and I have changed my diet, no fried foods and plenty of fiber. Controlling my stress level also helps, I know it's hard but breathing correctly and being calm does help. Stress tightens everything up and makes it worse. Please feel free to contact me anytime at office@steenbekes.com if you want to talk privately. Hope this helps.

Your friend, Deborah

>----- Original Message -----
From: Debbie Soder To: Multiple recipients of list ADHESIONS Sent: Wednesday, July 09, 2003 7:08 PM Subject: Re: Dr. In Pennsylvania - Question

Hi, I'm new to all this so please bear with me. Have some questions for you guys. Hope some kind soul out there with some knowlege about what I'm going thru responds. God bless you in advance. Here goes: I'm 44 yrs old and had an emergency appendectomy for an abcessed ruptured appendix 4/24/03. During surgery surgeon found distal adhesions on the small bowel I was unaware of (except for maybe some pulling in my right back occasionally). Had laparoscopy in '88--perhaps the cause. Could these adhesions have caused the irritated appendix? Surgeon "cleaned up" adhesions during appendectomy. Inserted two drains (one small, one Jackson Pratt) in my cecum and ileum and I left the hospital in two days (against my better judgement) with drains in me. Had drains removed as out patient 1 wk later (tho still some drainage). Also at time of surgery they found I have extremely fibrous uter! us ( the size of about 12 weeks pregnant). And CT scan found a kidney stone embedded in left kidney wall, of 7 mm. One month after appendectomy I had kidney stone surgically removed out patient (some fragments remain in the kidney wall). But beginning 4 days after appendectomy, I began to have burning and pain in lower right. Then right back pain came back. Next bloating,constipation, and pulling as well as bladder spasms and sometimes difficulty urinating. Could adhesions from appendectomy have reached the bladder? Right thigh where it meets the abdomen feels like there's a string wrapped tight around it. Right leg goes numb. Had even more abdominal pain and pressure when I went off antibiotics 6 weeks after surgery. Had 5 cat scans in one month. No blockage detected, no abcess detected. Started rounds of surgeons, urologists, gastroenterologists, counselors. Tr! ied to medicate me for anxiety. Limited time for questions/answers. Diagnosed with adhesions and irritable bowel. Told to I''ll need to live with it. More surgery would mean more adhesions. I now have so much pressure on my rectum and lower back/spine it hurts to walk and sit sometimes. Also feel contraction like spasms over my bladder/uterus, especially when I lay flat on my back. Think that adhesions from laparoscopy came back worse, as well as new ones from appendectomy. Could the adhesions be tightening my abdomen and shifting fibroids to cause more pressure? DIzzy, forgetful, fatigued, panic attacks (psychological or poor diet from stress?) Don't know if problems are from the adhesions, fibroids, kidneys, or combination of. Scared and don't want to live like this for the rest of my life. I love life and was a very mentally and physically active person before this with a full life. Now I can't even focus and am losing interest in everything. How can I help my self? It's only been 2 mos. since surgery. Could I get even worse over time? What complications could happen? Did I cause more adhesions for myself after surgery by running around from Dr. to CT scan etc., instead of resting? I have no family support and no money. I do have a 23 yr. old daughter, but she is dealing with her own life and stresses tho she tries to help me alot and is a loving child. Should I have the hysterectomy and take my chances hoping it'll relieve the pressure and they'll also clean up the adhesions and more won't grow back? What about the cramping - intestinal blockage? Should I go for upper and lower Gi even tho Ct scans were clear? Is this the beginning of surgery after surgery and complications for the rest of my life? (please God forbid).! Have to make some decisions. Returning to work in three weeks and don't know how long my job (and thus insurance) will last. But if I do have surgery there's no one to take care of me (daughter works 12 hr days to pay rent) and my insurance won't pay for homecare. I know you can't tell me what to do but could use some advice. Scared, alone, and afraid. Trying to trust our Lord, but also hungry for human interaction and answers. Sorry for the long e mail. Hope not depressing anyone. Await an answer. Thanks!

Maria <mtj@linkline.com> wrote: Hi Deborah, My name is Maria...I am going to PA and have my adhesiolysis done...there are 2 surgeons who will do the surgery...one does take insurance and the other don't...but I have talk to this surgeon in PA and they do payments...I called them today but the lady that works at the billing department is off today, so I will call them back tomorrow and let you know how much exactly it will cost to start the surgery...like what I said they do have payment plans...not with the other surgeon that does not take insurance, if I'm not mistaken we have to pay him after the surgery for the total amount, which is not that much really...but, I will let you know tomorrow after I talk to this lady at the billing department...I need to get my surgery done ASAP since I am having so much pains and getting worse everyday...I pray that this misery will ! be over soon...God Bless All of Us! love, Maria At Wed, 9 Jul 2003, Steenbeke's Office wrote: >
>I am thinking about going to Pennsylvania for surgery as I can not afford
>the trip to Germany right now. My doctor here said he would help me with my
>insurance company, but I read on a recent post that the doctor in PA does
>not accept insurance. Is this true? Is he really only private pay? Any
>information about this doctor would be greatly appreciated.
>
>Thanks
>Deborah
>

>>>----- Original Message -----
>From: MICHAEL MURRAY
>To: Multiple recipients of list ADHESIONS
>Sent: Wednesday, July 09, 2003 10:38 AM
>Subject: Re: One last time-my story
>
>> I would have to agree with Lisa on everything she has said.
>> I myself have been to Pennsylvania for surgery with no good results.
>> I went to Germany last ! December and had surgery. I came home and had some
>> problems in which I notified Dr. K. about. He suggested that I have some
>> tests ran and low and behold I had Gallstones. I had my gallbladder out
>in
>> May. I have to thank Dr. K for suggesting the tests as I don't think my
>> drs. here would have thought to do that. I wanted to go back to Germany to
>> have this surgery but was unable to go.
>> Unfortunately I am experiencing pelvic pain and other problems once again
>> and have had to go back on pain patches. I CAN'T SAY THAT IT IS ADHESIONS
>> BUT IT FEELS AS THOUGH IT IS. (The only way to know for sure is to go in
>and
>> look!)
>> Would I have another surgery for them in the states? NO!
>> I do have a friend from my town that followed me to Germany for surgery
>and
>> she is doing well. She didn't have adhesions in the pelvic area though.
>&g! t; I went to Minnesota at one time and was told that it is hard to get rid of
>> them in the pelvic area.
>> So...I think your best chance is Germany but I don't think we can say that
>> it is going to be 100% effective.
>> I am glad that there are some on here that feel they are adhesion free now
>> but there needs to be some insight on the expectations.
>> Kelly
>>

>>>> ----- Original Message -----
>> From: "Lisa"

>> To: "Multiple recipients of list ADHESIONS"
>> Sent: Monday, July 07, 2003 11:18 AM
>> Subject: One last time-my story
>>
>> > Hey everyone,
>> > I'm still seeing a little bit of confusion over the results of many that
>> > have been to Germany. I would like to say my peace and clarify some
>> > things that I now understand...
>> > Both Sally a! nd I have had some trouble after our surgeries with Dr.
>> > Kruschinski. I think you all ready knew that we have been up-front with
>> > our problems. Sally has told this board of her 1st surgery and the
>> > appendicitis that followed, all the problems it caused her with the
>> > resulting massive infection, and explosion of adhesions because of that
>> > infection. She told us of her 2nd surgery and her reaction to the
>> > spraygel??? If that is indeed what happened, she was the first to
>> > experience these kinds of problems, and no one knows exactly what
>> > happened. She has been very up-front with it all, as have I. I posted
>> > last fall of my continuing problems, and that I was told it was chronic
>> > pancreatitis, which turned out not to be the case! We have both tried
>> > our best to keep you all informed of what is happening with us, we have
>> > been honest! In retrospect I guess we could have posted more about this,
>> > but it has been a long struggle for both of us, with no definative
>> > answers. We also didn't want to drag down others, or give them any idea
>> > that the combination Dr. Kruschinski offers is not working! That is
>> > simply not true, he offers the best chance we have, in my opinion...for
>> > many patients the use of gas in adhesiolysis can be a factor in adhesion
>> > formation, so why not get all the help we can get, IF that is the route
>> > you choose to take!
>> > I also feel the need to clarify something I said awhile ago... that my
>> > 3rd look showed a very small adhesion...I stand corrected, and wanted
>> > you all to know that! What I saw as an adhesion,(I'm not a medical
>> > person) was in fact an "adhesive cord" which is not an adhesion, is not
>> > effective as an adhesion, it was very small,1 milimeter, and most
>> > important does not mean that I do in fact have adhesions back! I have
>> > gotten a second opinion on this matter, and they agree it may(or may
>> > not) be an adhesion!I chose to think NOT!!
>> > I have said before that I DON"T KNOW IF MY ADHESIONS ARE BACK... I have
>> > chosen another route that makes perfect sense to me and my situation...
>> > interstiial scarring. I'm still learning exactly what that means, but I
>> > think I can safely say it is more about nerves(on a cellular basis) than
>> > anything!!If any one has questions about this I'd be happy to try to
>> > explain the best I can, but I am still learning!
>> > I hope this clears some things up for you all...
>> > Lisa
>> >
>>

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