Re: Help - Karla/Tami

From: Karla N (ifirgit@yahoo.com)
Thu May 16 05:57:04 2002


Tami, PLEASE, PLEASE, PLEASE read my story (Karla Nygren) on the adhesion quilt before you proceed any further. First of all, even the worst of adhesion cases can be done laprascopically if you go to one of the experts...of which there are very few in the world. I think that just about all of us have been told by our surgeons that we are the worst case they have ever seen...in my case I was not only the worst case, but I caused them nightmares the night before my many surgeries. Yet, many people have been able to go to see the experts and have their surgery done laprascopically. Having a laparotomy makes your adhesions worse. You can still form adhesions from a laprascope but to a much smaller extent. You say that you have a good doctor and you trust him? Tami, I trusted my doctors too. I thought that they were doing everything that they could to try and help me. But, they were only making my condition worse by continuing to operate over and over. The nicest doctors don't always do the best things by trying to get you out of your pain. Pain is an awful thing, but too often the consequences of having surgery to relieve that pain are far worse. Ask your surgeon to help you better manage your pain so that you don't have to have surgery. You have that right. No one wants to live on narcotics for the remainder of their lives, but I don't think that anyone wants to be in my shoes either...dying because my body is in such poor condition from all my surgeries and no one will operate anymore to correct the problem. They made the problem with all of their surgeries that I "had" to have....now they won't touch me. I would suggest that you visit the ASAP site http://www.widomaker.com/~skipb/panic.html and read what they have to say. Photocopy everything, but most particularly the patient's bill of rights. When you see your doctor ask for better pain management. Tell him that you are aware of your rights. Demand to be treated for your pain. A week or so ago I gave advice to someone else and Helen was so kind as to put it all together. I have saved that advice and in the future will just go ahead and post it. I am sorry, it may get a bit repetitive, but sometimes it takes that to get the point across anyway. KARLA'S WORDS OF WISDOM: "I would suggest that you GO TO THE ASAP SITE ( http://www.druglibrary.org/schaffer/asap/ ) and READ all the material there. Follow the steps that they suggest; and PRINT OUT all of the information. I followed these steps myself and was able to find pain management...at that point what I got was better than I was receiving which was nothing. "If I find myself needing more now I take along my copy of the PATIENT'S RIGHTS...just in case. You should also RESEARCH the Adhesions website ( http://www.adhesions.org ). READ EVERYTHING you can get your hands on. "GO INTO THE ARCHIVES of the message board (searching takes you into the archives) and TYPE IN the name Helen Dynda. Doing this will bring up a wealth of information about adhesions, treatment...you name it. PRINT OUT this information as well and BRING IT TO YOUR DOCTOR.. "You may also wish to GIVE IT TO YOUR FAMILY MEMBERS or to any other people that you feel need to be better informed about this disease. "While you are researching this website take time to visit THE ADHESIONS QUILT. Go through and READ THE STORIES. I am sure that you will find quite a few people who have similar stories to yours. Please take the time to READ MY STORY (Karla Nygren). Also take the time to POST YOUR STORY. Each person's story helps to educate the growing number of people who are learning that they suffer with Adhesion Related Disorder."

Take care and God Bless!

Karla

Tami <tamitorres@hotmail.com> wrote: Thanks for the advice and replies everybody

Let me first say that the reason my surgeon did not remove the extensive adhesions last month when he did my laproscope is because I was in an out-patient facility that was approved by my insurance....I talked to my doctor about this and he and I agreed that I would not go to anymore outpatient facilities...He wanted to do the laproscope because he knows doing the big surgery will cause the adhesions to come back again...sorry for any confusion I caused on this....this was the reason that he could not remove the adhesions on the left bowel. He stated that it was massive and would require a large incision, which of course could not be done at the outpatient hospital. The reason I said I don't think I have IBS is because I don't think I have any of the symtoms i.e diarrhia, constipation, gas, bloating etc. I am scheduled to see the Gastrointerologist and the Urologist both on June 19... I will go ahead and see what they have to say and if any testing is needed then I will probably go ahead with it, just to rule anything else out. I just had some reservations about all this, because I from past experiences know my body and the pain has always been the same type of pain, from the adhesions. If there is something else going on, then I need to know. I trust my surgeon, he has operated on me 3 times now, and he agreed to do it again if necessary. My adhesions started with Endometriosis 18 years ago. I have been in pain for many years. I feel I have a good surgeon, I was just let down when he told me to see the other physcians first. I will continue to read and educate myself on the adhesions. I appreciate all the advice and replies, I was so ready to give up a few days ago. You people are keeping me going right now and thank you for that!! My pain medication is Tylenol 3 and it's not working. The heating pad helps and laying down. I am back at work only 6 hours a day until 2nd week of June when I see my surgeon again. I can't hardly sit down, the pain is bad.. Enough about me for today. THANK YOU

At Tue, 14 May 2002, Karla N wrote: >
> Shali,
>I didn't mean that I thought you were suggesting she cancel surgery...although if it was me, I would cancel it....until I could get to see one of the very limited number of experts. You and I both know that unless there is a major miracle surgery isn't going to help. I do believe that she should go through the tests to rule IBS out....no doubt about it. Is there such a thing? So many of us have been told we have IBS...but IBS is not causing my problems....adhesions are.
>Karla
> Shali wrote: I think my point was missed. I didnt suggest to cancel surgery. Surely,
>Im not disagreeing with your comments below by no matter of means. I
>was talking about while she is waiting, to rule IBS out.
>
>Shali
>
>At Tue, 14 May 2002, Karla N wrote:
>>
>> Shali,
>>The same thing is true for adhesions. I agree with you...surgery is not the answer. But, all too often doctors have been passing off problems from adhesions as irritable bowel syndrome. Adhesions are a big coverup....they don't want people to know that when they have surgery it is possible for them to end up with an even worse problem...so "lets not talk about adhesions". Lets not tell people that surgery is the cause of their new problem....it very well could be that the reason she has pain immediately after surgery is because her adhesions are back. Adhesions begin forming immediately after a surgery. They are done forming after a week or so. The doctors don't want us to know all of this because ultimately it could hurt them in their pocketbooks. Yes, the answer is no more surgery unless its an emergency, but for a different reason...because with each surgery the adhesions get worse. You get more pain. Your problems multiply.
>>Karla
>> Shali wrote: How do you know you dont have symptoms of IBS? IBS does not just involve
>>bowel problems. Sure doesnt hurt to find out prior to the surgery
>>because if you DO come up with alot of yeast, there IS your answer or
>>the doctor's anyway.Even you say yourself to get SOME relief after the
>>surgery it just always comes back. NOTORIOUS for IBS!!!! But IBS has us
>>BELIEVING its something else to the point we dont even believe
>>ourselves! Second, I really try to utilize my time in the most efficient
>>way possible; therefore I will only say read my last post in regards to
>>"ALL" these tests you have to have. There is only one test and I even
>>provided the means for that. You can go to ANY doctor you want; you
>>dont OWE any one doctor anyTHING. No one owns your body.Not to mention
>>paying you to go thru what you have to. Take the one test, get the
>>results and get on with it depending on what the results show. Good
>>luck
>>
>>Shali
>>
>>At Mon, 13 May 2002, Tami wrote:
>>>
>>>Thanks for the replies and the information. From what I have read about
>>>adhesions is that alot of Doctors don't all believe that adhesions cause
>>>pain and alot of them say it could be IBS....but do I need all the
>>>testing if I don't have any symtoms of IBS?? I had a complete
>>>hysterectomy in 1996 and it took 6 hours to complete because of all the
>>>adhesions, bowels, bladder, ureters, etc. I have always gotten some
>>>relief from the surgeries, it just always comes back. My doctor that
>>>did my surgery on April 15, 2002 told me that there was no way he could
>>>get the "ton" of adhesions with the laproscope this time. And he has
>>>agreed to do the surgery on me. But before he does it he wants to rule
>>>out anything else, so that is why I have to see the Gastro DR and also
>>>the Urologist...I saw my PCP yesterday and he told me that I should have
>>>the tests done just to make sure there is nothing else going on. He
>>>also told me that they have used different types of radiation therapy
>>>for adhesions...Have you ever heard anything like that before??? He also
>>>gave me a RX for Neurontin. He told me that when people sometimes have
>>>a limb amputated they still have nerve endings that make them think they
>>>still have the limb...he said this medication is to desensitize
>>>(Misspelled sorry) the nerve endings and hopefully help my pain
>>>medication work better....So I'll try it!!
>>>Sorry to just ramble on like this, I am just thankful to find people to
>>>talk to about all this....you don't know how grateful I am...I truly
>>>am....thanks
>>>
>>>At Mon, 13 May 2002, Shali wrote:
>>>>
>>>>I have to entirely concur with Cathy on this one and I'll tell you why
>>>>in another point of view. Your doctor has mentioned IBS. Interesting.
>>>>If you read my other post I mention this because I have the problem as
>>>>well. Of course, Ive had two emergency surgeries for adhesions, but the
>>>>IBS is whats underlying the whole disease thing anyway. I would see
>>>>whats going on INSIDE the gut which is easily done with metabolic
>>>>testing. You do not even have to go anywhere! Dr. Trent Nichols in
>>>>Hanover, PA will do phone consultations and send you the kits to send to
>>>>the lab! He is a gastroenterologist and took part in writing the book
>>>>Optimal Digestion. Want the number? Let me know, I'll dig it up. The
>>>>phone consultation runs between $77-110 depending on the amount of time
>>>>spent. There are times when I DO feel improvement like yesterday. Other
>>>>times not so much but that is the nature of IBS anyway and especially
>>>>being sick for 8 years and 4 surgeries. A CDSA [comprehensive
>>>>diagnostic stool analysis - NOT the ones the MD's run], will tell it
>>>>ALL. Its about $225 and it will show dysbiosis, ph, vegetable
>>>>digestion, protein digestion, yeasts,etc., metabolic markers and give
>>>>the full picture. Think I would rule that out or in first. Thats my
>>>>two cents.
>>>>
>>>>--
>>>>Shali
>>>>
>>>>At Mon, 13 May 2002, cathy:- wrote:
>>>>>
>>>>>Given that Person #1 can have insides that look like an explosion at the
>>>>>glue factory and yet not be in any kind of discomfort, and Person #2 can
>>>>>have relatively minor adhesions and be in agony, it would not be totally
>>>>>crazy to think that someone would only have the pains where the
>>>>>adhesions look "minor." It's all very much a matter of precisely what is
>>>>>connected to what in a microscopic sense. Yes, it's mostly that where
>>>>>there are a lot of adhesions is where you are going to find the
>>>>>adhesions that are giving you the problems, but maybe you are just one
>>>>>of the statistical outliers... I know that when it comes to endo
>>>>>adhesions it is pretty common that women with just a few adhesions are
>>>>>in a lot more poin than women with tons of them. (And no, nobody really
>>>>>has a clue why.)
>>>>>
>>>>>I think that you really need to be listening to what the doctor is
>>>>>saying "between the lines" here. It's possible that the reason that he
>>>>>didn't see much over on the right is that he didn't really know what he
>>>>>was looking for. Or maybe he couldn't get the scope over there very
>>>>>well to look. I think laporotomy should be out of the question unless
>>>>>you are in an emergency condition, like a bowel obstruction that they
>>>>>can't clear. It's just going to make things worse. And if this surgeon
>>>>>doesn't believe that he is skilled enough to do this with a lap, then
>>>>>YOU sure don't want to be arguing with him, right???
>>>>>
>>>>>I think that the idea of seeing other specialists in order to rule out
>>>>>other stuff is a wise choice. I think that you should also be searching
>>>>>for another adhesion specialist. After 11 surgeries, I think you should
>>>>>really think about trying something else, or at least trying somthing
>>>>>with another surgeon...
>>>>>
>>>>>At Sun, 12 May 2002, Tami wrote:
>>>>>>
>>>>>>Help.............
>>>>>>I've been away for a long time but now I have returned. I am seeking
>>>>>>advice and of course moral support. I just went thru my 11th surgery
>>>>>>for adhesions. It was outpatient with the laproscope and my Dr did not
>>>>>>remove any of the "ton" of adhesions that he saw. My pain is mostly
>>>>>>right-sided with some on the left. Problem is the Dr saw the "ton" on
>>>>>>the left and didn't see anything on the right. He states that my pain
>>>>>>cannot radiate that far...and he states that it will require a laprotomy
>>>>>>to remove the extensive adhesions on the left. Now I know from my pain
>>>>>>and experience what I am feeling is adheisons on the right. But before
>>>>>>he will do the Laprotomy he wants me to see a Gastro Dr and a Urologist
>>>>>>to rule out irrital bowel, etc , of which I have no symtoms. Only pain
>>>>>>meds I've been put on is Tylenol 3...which is doing nothing....just
>>>>>>curious if anyone out there knows of a good surgeon in Las Vegas? or
>>>>>>should I go ahead thru all the tests and more agonizing pain waiting to
>>>>>>find out. My quality of life now sucks and I am so ready to just hang
>>>>>>it all up....help
>>>>>
>>>>>--
>>>>>cathy :-)
>>>>>


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