Re: physicians
From: anonymous (anonymous@medispecialty.com)
Thu Apr 18 12:33:14 2002
I just started reading these messages asking about doctors in Milwaukee.
I had a hysterectomy back in October and have been in pain for the last
3 months. I may now have ovarian cysts and adhesions. Could anyone
point in me in the direction of a doctor in Milwaukee. Also, is there a
doctor you would NOT recommend in Milwaukee. Thank you in advance.
At Tue, 29 Jan 2002, Karla wrote:
>
>Hi All!
>
>I have not written in quite some time and unfortunately I do not feel up to
>returning to the group at this time. As you know I am now being denied even
>the antibiotics to treat my urinary infections. Over the years I have
>developed allergies to the main drugs used to treat these infections. I
>have also developed a resistance to those drugs that I am not allergic to.
>At this point there remains one antibiotic that is effective. It must be
>given via IV. My doctor does not want me to develop a resistance to this
>drug as well, so he is allowing my infections to go untreated. When I
>become critically ill they will give me the vancomycin. My fear is that the
>untreated infections will only serve to damage my kidneys further, hastening
>my death. I believe that we are in a catch-22. I understand their
>intentions and they understand my concerns. I just know that even though I
>have accepted the inevitable, I still want to fight!
>
>I read Mary-Ann's response to Monica and it sent chills up my spine.
>Mary-Ann, I am not trying to pick on you, but it is my opinion that we must
>discourage surgery at all costs. Any surgery, other than emergency surgery,
>should be avoided. For the most part, we all have adhesions that
>dangerously effect our bowels and threaten us with obstructions. But to
>suggest that we have surgery to correct the situation is something we all
>need to refrain from doing. If Monica has surgery to remove her adhesions
>as she already has done four times(?), they are sure to return and it is
>extremely likely that they will be worse than before. We all experience
>times when our bowels partially obstruct and the pain is very intense, but
>eventually they work themselves out and life continues. If they were
>totally obstructed the pain would be utterly unbearable. I have had
>obstructions and it is definitely unbearable. It is at these times when our
>lives are in danger. No doctor will allow someone with a total obstruction
>to walk the streets. I think that you are very lucky to have a doctor that
>recognizes that adhesions cause pain. Many of us don't. I am fortunate in
>that respect as well, however that does not mean that I am given adequate
>pain control. These doctors are fearful of treating us with the medicines
>that we deserve, so often we are undertreated and live our lives suffering
>day after day. No one deserves that. I believe that our government or the
>AMA needs to go back and reteach surgical procedures. There are only a few
>doctors in this world that utilize the proper techniques in their surgeries.
>These techniques have proven to help prevent the reformation of adhesions.
>Are you aware that back in 1932 the government was told that it was
>necessary to use these procedures to prevent adhesions? Even back then the
>percentage of adhesions following surgeries was extremely high yet no one
>heeded the advice that was given following years of research.
>
>It is extremely important every time we are about to undergo surgery that we
>ask many questions. We must be the informed consumer. Is this surgery
>necessary? Why? Can I get a second, third or even fourth opinion? What
>techniques do you use? How many times have you performed this procedure?
>What is your success rate? Can I contact some of your patients? I am sure
>there are many more things that we could and should ask. No question is
>stupid. We cannot accept what the doctor has to say as what is best for us.
>It can and will get us into extreme trouble. Look at me. I believed and
>trusted! God only knows why it took me so long to say enough is enough! It
>is not a bad thing when a surgeon refuses to do surgery although we probably
>don't agree with him/her at the time. For the most part, it is a good
>surgeon that says no.
>
>Each one of us believes that we cannot endure the pain anymore. When I came
>to this group back in 1999 I wanted to get out to New York (he was in NY at
>the time) to see Dr. Reich. He was the only one that I would allow to touch
>me. I came to this group in October and insisted that I would not live
>until January. I had to have my surgery NOW! As time moved on the date got
>further and further away. Then I was told that I had to have surgery to
>correct the problems that had been caused by the negligence of my surgeons
>before Dr. Reich could perform my adhesiolysis. I had to scramble to find a
>surgeon. I even went back to my original surgeon in Milwaukee, but it was
>his ignorant statements that prevented me from making yet another mistake.
>I finally found a doctor willing to help me out. He was from your area too
>Mary-Ann. He is located at Weiss Memorial. Unfortunately, everything went
>wrong. I know now that I will never get out to see Dr. Reich. It has been
>almost three years since I joined this group and I am still alive. I live
>through the most horrific pain every day. Pain I never felt I could endure.
>Yet here I am. Yes, I am in a very precarious state and thoughts of suicide
>often fill my head. I know now that I can live through the pain but I
>struggle daily to live through the inhumanity of my life and yet I still
>survive. What I am trying to say is that we can get through this pain
>without the surgery. Except for some extreme circumstances we aren't going
>to die.
>
>Each person has to find their own ways of coping. With me it has been in
>keeping myself busy and not focusing on the illness and the pain. I loved
>coming to this group and trying to prevent others from making the mistakes
>that I made. It is my frustrations that have taken me away. It is hard to
>continue being positive with people when they don't seem to listen. It is
>hard to listen to some of the bickering that goes on over the least little
>thing, yet I understand that we all are suffering and we tend to overreact.
>It is also hard to continue to come to this group and maintain a positive
>attitude when you know that you are dying and there is nothing that can be
>done, yet you see people not heeding your advice and going out and repeating
>your same mistakes. You see, preventing others from taking my road gives my
>life purpose. Yes, I may die, but at least I will have died knowing that I
>helped stop someone from making those same mistakes. But when they make
>those mistakes you question your life. You question whether it is of any
>value since noone seems to hear what you are saying. That is where I have
>found myself. That is why I stopped participating. I will not bring my
>negative feelings to this group. We cannot continue to focus on all of the
>bad in life. No, we weren't dealt the best hand in life but it is up to us
>what we do with those cards. I don't want to bring anything negative to
>this group because it brings everyone down. I am not saying that we can't
>share our pain. Its how we share it that matters.
>
>When I read your post I had to respond. I pray that you don't take offense
>to my response. It is just extremely important that we discourage people
>from jumping into more surgery. I would be willing to bet that just about
>all of us have adhesions that "are strangling your insides". You are not
>the first person to make these suggestions and I am sure you will not be the
>last. It is unfortunate that in this day and age we must be responsible for
>educating ourselves but we are so lucky to have the methods with which we
>can perform the research. Now we must take the time to learn. I can only
>repeat over and over how desperately important it is for each and every one
>of us to educate ourselves about adhesions. Take the time to read the
>stories on the quilt. Devote the time to read them all and then place your
>story on it as well. To me, it is this quilt that educates the most. No
>one should miss it.
>
>People have spoken a lot about the drug neurontin. I was placed on this
>drug about a year and a half ago. It did not work very well, however during
>one of my hospitalizations I had a visit from the pharmacist to discuss my
>pain control. He informed me that my dosage was way too low to have any
>effect. They increased my dosage to what I believe was 900mg 3x's a day.
>It could have gone higher. It was also at this point that my ms contin was
>increased. This combination brought me the best pain control that I ever
>had. Unfortunately, when my kidneys shut down I was taken off the neurontin
>because of potential side effects. My pain control has never been adequate
>since.
>
>I pray for each of you daily and hope that some day an answer can be found.
>There is a new product on the horizon that has me very excited. It will
>never help me and perhaps it will be too late to help many of us. But the
>knowledge that it could prevent my daughter and my two beautiful
>granddaughters from living this same life is enough for me. This product is
>called Spray Gel and I believe it was used on Helen Dynda in her recent
>surgery. It was developed by Confluent Surgical Group and from all that I
>have seen it appears to be something that will work. I have never become
>excited by any other product...not even Intergel, but SprayGel causes me to
>get goosebumps. While in the placement of Intergel surgeons were not
>allowed to perform the appropriate surgical techniques, these techniquest
>can be applied with the use of SprayGel. Clot evacuation, copious amounts
>of saline solution, gentle handling and all those other techniques that I
>have forgotten are all methods of preventing the reformation of adhesions
>and now when used in connection with SprayGel the possibility of adhesions
>returning is greatly reduced. This product is available in the UK, Germany
>and Australia. It is being used in random trials here in the U.S. I
>believe the two states that are performing these trials are Texas and New
>Hampshire (or perhaps Rhode Island). I would recommend that no one rush out
>to volunteer for the trials as you cannot be guaranteed of having the gel
>used. This would only serve to worsen our conditions if the product was not
>used. I hope that you all will share in my excitement regarding this
>product. While it is somewhat frustrating to see these products developed
>and know that they cannot be used to help me, it only serves to motivate me
>to continue to reach out to adhesion sufferers around the world in an
>attempt to educate.
>
>God Bless you all!
>
>Love,
>Karla
>
>Somewhere up in the stars.................
>My angel and me!
>
>http://www.geocities.com/karlasfamily2001
>http://www.geocities.com/princessd82000/BraydensHaven
>
>>>----- Original Message -----
>From: "Mary-Ann Karaganis" <mekjjk@earthlink.net>
>To: "Multiple recipients of list ADHESIONS"
><adhesions@mail.medispecialty.com>
>Sent: Tuesday, January 29, 2002 9:31 PM
>Subject: Re: physicians
>
>> I don't know of any in Milwaukee, but I'm an hour and half drive south
>with
>> GREAT doctors! I live in the NW suburbs of Chicago, and my internist not
>> only believes that my problems stems from the adhesions, but also makes an
>> effort to help me with the pain.
>>
>> What you're describing sounds extreme enough to warrant surgery to clean
>> things up. Yes, I know there's a danger of it coming back, but when the
>> adhesions are strangling your insides, you have to get rid of them.
>>
>> Hugs to you. I'm thinking of you.
>>
>> Mary-Ann
>>
>>>> ----- Original Message -----
>> From: <Bulldoggraphics@aol.com>
>> To: "Multiple recipients of list ADHESIONS"
>> <adhesions@mail.medispecialty.com>
>> Sent: Tuesday, January 29, 2002 8:54 PM
>> Subject: physicians
>>
>> > Does anyone have any references or any knowledge of any doctors in the
>> > milwaukee area who have heard of adhesions and believes they are
>> real??????
>> > I sometimes feel my only alternative is that i will die - as the other
>> > physicians i have visited - dont believe me. I live with bowel
>> obstrucitons
>> > and cant eat or pass anything. i dont know what to do or who to try. it
>> has
>> > been a 12 year struggle. the major struggle is trying to talk a
>physician
>> in
>> > to doing a laparoscopic surgery to appease me.. and if they see
>adhesions
>> to
>> > please laser them. This takes months to talk a doctor into this. by
>this
>> > time.. i have lost my job... lost my insurance... lost patches of hair..
>
>> > teeth break off... its an awful situation.
>> > thank you
>> >
>>