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akl_0518

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Reply with quote  #1 

My wife has been a patient of Dr. Fleisher's since 12/07 and he was the first doctor to Dx her and treat her effectively.  We are having to see Dr. V coming in December and I was wondering how many of you are doing the same thing and if you know how their treatment prortocols line up.  My wife is on a variety of meds daily for management, but my queastion is with the narc's.  She's on morphine daily as well as Stadol nose spray p.r.n.  Does she subscribe to these Tx methods , b/c even though dr. F works at the University Hospital here in Columbia we have encountered ER doc's not treating my wife even remotely close to his Tx plan in the ER and mostly are completely non-understanding.  This is a new problem for us since we have been here in Jan. 2009.  Please any info or insight would be graciously appreciated.


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~~Adam K. Leach~~ "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3..."Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
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mahler1987

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Reply with quote  #2 
Adam,
This very topic is being addressed in another thread in this forum.
http://cvsa.websitetoolbox.com/post?id=3516224

Nobody other than Dr. V. is going to be able to give you the answer your looking for.  Our primary medical advisors consult and confer with one another. 

Pattie

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I may have CVS but CVS is not me.
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typatricksmom

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Reply with quote  #3 
Hi Adam,
My son has also been prescribed Stadol, but I have never given him the presription. Would you share when your wife decieds that the stadol is needed, and what the effects are for her? I have not noticed another person who uses stadol on the site for years and would so appreciated any input that you could give.

Is the transition to Dr. Venkatestan propmted from Dr. Fleisher? Just curious, because my son is also a patient of Dr. Fleisher. I am wondering if we need to contact Dr. Li's office.



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Linda
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akl_0518

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Reply with quote  #4 
Hi...this is actually Adam's wife this time, my name is Kiley.  I was just going to address the Stadol nose spray question.  I actually go through a bottle of stadol fairly quickly compared to a lot of other people.  Out of every single medication I've tried I would say this is my best abortive "miracle" drug for me but maybe not for everyone...although it hasn't aborted every episode but it has drastically reduced them.  I usually always have the morning sickness and so I pretty much use it every morning and it takes it away within minutes.  Also, another one of my triggers is food so I find myself taking it more often after I eat because food often times upsets my stomach.  Even though stadol is a narcotic, I don't have the pain immediately in the a.m. and after eating, it's just usually the nauseous feeling but the stadol takes it away even though it's not pain.  Although it does help a lot for the pain too.  When I first began using it I was very sleepy of course because it is a narcotic but my body is so used to it now it doesn't effect me that way anymore.  Unfortunately my body is now dependent on it but I guess I would rather have this dependence rather than being horribly sick all the time. 

Also, about the Dr. Venkatestan and Dr. Fleisher question...we came up here to Missouri (from Texas) in January because I was in the middle of a horrible episode that would not go away and nobody in Texas would treat me properly. The very second that we drove into Columbia, MO and arrived at the hospital I was still in an episode and Dr. F met us at the hospital immediately admitted me into the hospital which ending up lasting about 1 1/2 months of being inpatient.  We all thought we would be up here about a week and then be sent home but we all felt more comfortable with the idea of "living" up here temporarily.  Now we're staying at a hotel and seeing Dr. F as outpatient because I've been getting better.  But Dr. F has said that there's a chance he will be retiring soon - I think mostly from adults.  But I think we all know he has tried to retire several times!   Anyway, my husband and I and Dr. F decided it would be a good idea to get our foot in the door w/ Dr. V so it will be a smooth transition when we decide to go see her.  Also, there's kind of been a "war" of sorts between Dr. F and the ER at the hospital.  They're starting to act like all other ERs and ignore his recommendations so he said it would probably be good to see Dr. V since she's at an actual CVS clinic...rather than just one doctor out of the entire hospital.  Anyway, hope this helped...sorry so long...but answers to anything about CVS are never simple are they??

Kiley

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~~Adam K. Leach~~ "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3..."Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
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drewswife

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Reply with quote  #5 
Hi, Kiley.  Welcome to the board!

We've also talked many times about just up and moving to a location with a CVS specialist nearby.  My husband (the CVSer) is much more reluctant to do this than I.  We tend to go round and round about how much to let our life be guided by the illness.  I tend to think that taking a step like that could help us get a hold on the CVS and ultimately stop it from dictating our lives.  But leaving family and support systems would be very difficult.  I'd be interested to hear more about how this transition has been for you both.
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typatricksmom

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Reply with quote  #6 
Hi Kiley,
I can not tell you how much I appreciate your input right now. You are truly a heroine of CVS as well as your husband. I truly had no idea of the difficulties that Dr. Fleisher was experiencing. It is funny how probably a 30 or forty something is challenging the wiseness of a 70 something doctor who has so much experience with a condition which has been so underdiagnosed that have left so many suffering. Truly, I love Dr. Fleisher, and so does Ty. He feels understood by him, and when an 8 year old boy feels this way about a doctor it is incredible. With Dr. Fleisher I get the impression that he truly became a doctor to help people - no ego attached. Clearly, Dr. Venkatestan  must be incredible in order for Dr. Fleisher to transition his patients to her. 

Thank you agin so much for sharing about the stadol, your input is so appreciated. Pease continue to keep us posted about how you are feeling. You are in my thoughts...


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Linda
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akl_0518

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Reply with quote  #7 
Hi Drewswife,

Moving to be closer to Dr. F was the hardest/best decision we made.  It was last on our list of solutions.  I was very resisitant to it as well but my husband just couldn't stand to see me suffering anymore.  So, during a very bad episode I was sort of "in and out" of sleep...my family came into the room and told me "You're going to Missouri to see Dr. Fleisher tomorrow!"  My husband and I have always had money problems so I couldn't see how it could be done.  But Adam, my husband, had taken care of everything.  It was a very humbling experience for both of us.  We were so fortunate to have friends/family and our church help us.  They set up a gift card so that people could go to the bank and put money on it for us so that we could go.  Adam told both of our employers that we were leaving and we weren't sure when/if we would be back.  It has been very hard leaving my family in Texas...we have noone up here in Missouri but I know that I have their support 100% and eventually we WILL get back down to Texas.  There have been good and bad times during this transition but I think it's worth it.  I had to learn not to worry about what other people thought about me and just focus on my health because w/out my health I wouldn't even be able to enjoy time spent w/ my family/friends.  I have to get better and I am on my way.  I have my husband with me and he's the most important person in my life and we have only been married for 6 years and have had to deal with this the entire time.  From my standpoint, if I didn't have my husbands love and support through this...I have no idea where I would be now...I probably wouldn't have even had a diagnosis!  But we have also had discussions about how this effects my husband and in some ways he probably suffers even more than me.  I have no idea how you or he does it.  It has to be horrible to see your spouse go through something like this.  He always says he wishes it was him that had it but I don't know that I would be strong enough to watch him go through it.  I'm sure you're doing a great job w/ your husband and believe me it probably helps him more than you'll ever know.  In my opinion, going to see Dr. Venkatesan would be a good idea.  You and your husband may not even need to move to see her...just take a trip to have an appointment w/ her and see how things go from there...you never know what will come of it but it can't hurt.  I really do hope everything works out for y'all.  As you know it's a work in progress and it'll take some time and suffering but focus on the end result.  Let me know how both of you are doing! (Ugh...such a long post...sorry)

Kiley

__________________
~~Adam K. Leach~~ "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3..."Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
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akl_0518

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Reply with quote  #8 
Hi Typatricksmom,

Thank you so much for your post.  I really do appreciate it!  I agree with you totally about some of these younger doctors that have done NO research whatsoever and think they know all about CVS and the treatment.  One time I specifically asked an ER doctor if he had ever heard of or treated someone w/ CVS and he said "No" so I offered him some literature on it and he refused to read it and walked out of the room and treated me how he thought I should be treated (which of course didn't work).  Now I know not every Dr agrees on the treatment for CVS but this guy had never heard of it and wouldn't even listen to me!! I was so outraged!  And I completely agree w/ you about Dr. Fleisher - he's not just a doctor - he's a caring human being that actually listens to what you have to say and his best interest is to get us feeling better. 

It makes me so sick to think there are children out there such as your son that suffer from this and can't get the help they deserve.  I'm 25 and it's so hard on me...your son must be so strong to be able to deal w/ this and you too!  I'm glad that your son gets to see Dr. Fleisher. I know my Mom had a very hard time trying to get these dr's to give me a dx when I was younger but they never did. I wonder how many people are out there that are just suffering and getting the run around like I did for 10 years.  We'll keep your family in our prayers.  My husband and I have been talking a lot lately about getting the word out about CVS.  It needs to be recognized and I feel something big is going to happen.  It may take a while and it may be hard but we're going to do everything we can. 

__________________
~~Adam K. Leach~~ "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3..."Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
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drewswife

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Reply with quote  #9 
Kiley,

Hello there!  So nice to meet you!  Your story sounds so similar to ours in that we are also a young couple who has had to deal with terrible illness that most 20-somethings are (fortunately) ignorant about (that's a whole other post!).  We also traveled to see Dr. F two times, and I gave him a huge hug after he met with us for our initial 6-hour consultation because he is so wonderful.  I'm so glad that it has been a positive experience moving out there for you two.  I want so badly to just drop everything and focus entirely on helping my husband get his CVS under control, but I can't uproot him against his will.  I've learned that it's important for him to feel in control of the small number of things he does have a say in, since this disease has taken over his body and much of his life.

Thank you for your kind words and encouragement.  You're right--it's very difficult being the one sitting beside the bed and watching such endless suffering.  But my husband makes me so proud with his endurance, faith, and unbreakable spirit.  I'm sure your husband feels the same way about you.

Take care, and stay in touch.

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MiamiLargo

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Reply with quote  #10 
Hi,

I know I am responding to a 12 year old discussion, but I'm very curious to know more about stadol and all that have now transitioned from Dr. Fleisher to Dr. V.  

My fiancé saw Dr. Fleisher years ago, and it was his best experience with a CVS doctor.   Has anybody recently seen Dr. V who has been prescribed or continued their prescription of stadol, with other medications not sufficing?  Or do other therapies used in the past 9 years always worked sufficiently?  It seems stadol isn't appearing in the more recent postings.  

Kiley, I would love to hear from you if you are still on this forum!  This illness is having a real impact on me and my fiancé with the illness, and your postings seem similar to what we experience; we were initially in touch with Dr. V's office just last week but are out of state also, so it will be a trek to get there.   I hope you can send a message of hope!  
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wynnak

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Reply with quote  #11 
I met with Dr. Fleisher and Dr. V at the CVSA conference a little over a week ago. Neither of their presentations, nor any of the physicians presenting besides them mentioned stadol at all under any medications that they currently use to treat adult CVS. Due to the opioid crisis, and the CHS confusion for CVS sufferers, it has made it hard to get pain medications even when prescribed. My understanding is that, if it is for ER treatment, the go to now would be ketamine. But that is under observation etc.

Most of the doctors are prescribing imitrex or similar for the abdominal pain which is an abdominal migraine.

I'm sorry that you are struggling so much. If you have a physician that is helpful, but does not understand CVS, they can consult with a medical advisor. 

But, Dr. V is the Go to for adult treatment right now. If going there is an option, I would highly encourage it.

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Blynda
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kaleach0307

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Reply with quote  #12 
Hi there!  This is Kiley aka akl_0518.  I must say, this is very strange.  I have not visited this site in many years and today, I come on here and see my husband's previous username...I can tell you, I was very shocked.  I don't know how to explain it..but for some reason I was just led here today to read through some messages and research to see if there is any new info re: CVS.

Let me back up first and then I'll tell you where I'm at.  While I was in Missouri seeing Dr. F, I continued to get very, very sick with episodes that never seemed to end no matter what treatment I received - no pain medication, nausea medication or anything at all seemed to help.  We were so close to losing all hope.  I was on every medication out there for pain and nausea and I just couldn't get better.  Once I knew about Dr. F retiring, both my husband and I were clueless on what would happen to me.  My mother-in-law was discussing our situation with the father of one of my husband's old high school friends.  It turned out that the friend was a resident at University of North Carolina - Chapel Hill hospital and he told us about a GI doctor that practiced at UNC.  After many calls with his PA and sending over stacks and stacks of medical records he told us he could help.  We put all our faith in him and packed up and moved even before we saw him.  Long story short, I am now off all pain medications at home and am doing much better.  This doctor, Dr. Drossman, thinks outside of the box and is such a kind and caring person who I can honestly call a friend.  I am still on many medications but I am thankful I am not on any pain medications at home...I just didn't want to rely on them anymore.  I do still have episodes, however, they have dramatically reduced in frequency and severity. 

During the time that my husband originally began this thread I was on disability and my husband was working a 3rd shift position and we were barely getting by.  Today, I am grateful to say that I was able to attend and graduate college to become an x-ray tech and have a full time job that I love.  My husband was able to also attend college and he is now a nurse.  It most definitely wasn't an easy road and I did have my set backs but we made it.  With each set back, we made adjustments to my plan and forged ahead.  I'm sure I will still have set backs but I know we can handle them no matter how difficult it seems.  I will say this, when I do have an episode that requires an ER visit, I become very discouraged because I feel as if I'm failing everyone who has helped me get to where I am, including Dr. Drossman.  This is someone I am working on though...and I know it will take time.  The good thing about Dr. Drossman is that he relies HEAVILY on communication and so he addresses my thoughts and feelings along with any physical problems.  Part of the reason I came to this cvsa web-site today was because of my need to address how I view CVS.  Once I started to feel better and realized that CVS didn't control me, I stopped coming here and that is because I didn't want a reminder of what I have been through.  At my last appointment, Dr. Drossman and I discussed the fact that I have PTSD in regard to CVS and I realize now that I have been suppressing my feelings about how CVS has affected me.  This is going to be a long road to deal with this...but I'm willing to try my hardest.  I will get knocked down...but I MUST get up no matter what.

So, anyways, I know I got off topic here but I just wanted to add an update.  In regard to the stadol - I am very happy I do not need to rely on it anymore.  At the time, in our desperation, it felt like it was working but that was only a temporary fix.  Once I weaned off it I began to notice that I was feeling better - it's hard to explain - but I just felt a little more normal. 

Today, I woke up feeling crappy and that dreaded feeling started coming over me - thinking "Great...it's gonna be a CVS kind of day".  I think that that is what led me to this web-site today...maybe to just quietly browse the web-site and hear others' thoughts about what they're going through.  I think it is a step in acknowledging what I've been through and accepting it.  I got so used to constantly telling everyone "I'm fine" when they asked how I've been doing because I don't want anyone to have pity for me or feel sorry for me.  However, my husband has learned to look at me and just know that an episode is coming and know that even though I said "I'm fine"...I'm not.  Even though I say "I'm fine" he will go get his shoes on and say "Let's go" knowing I need to go to the hospital.  Luckily, it's not very frequent anymore though. 

Again, I apologize for this post, but I just now realized that I needed to say all of this for myself.  I needed to let it out.  I'm still in the learning process of CVS even though I have had it for over 20 years.  I pray so much that whoever is reading this can see that there is hope.  I've lost it more times than I can count...but it's there, I promise.  Sometimes that is all that can get you through.

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Kiley Leach
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ginny

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Reply with quote  #13 

Thank you Kiley for such an inspiring story!  And congrats to you and your husband for your college graduations.  Your doctor sounds amazing.  Maybe he would consent to being on the CVSA medical doctor referral list?

Most who no longer visit the message board are just busy getting on with regular busy life.  It can seem to those who are just joining that all the stories are stories of illness so it is wonderful to read about how well you are doing.

Maybe you can check in once or twice a year?


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ginny CVSA Moderator
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wynnak

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Reply with quote  #14 
We love to hear the success stories too. People look for them. If it would help you kind of work through it, you can submit to Stories of hope on the webpage.

I am so happy to hear that you have a wonderful Physician. I have personally reached out to Dr. Drossman. Trying to recruit him for our referral list. Maybe you’re the push he needs to be added, if you’d like to encourage that.

Dealing with CVS does create its own issues. I would definitely not rule out PTSD. It creates a lot of the anxiety that causes an episode. We had to learn to break that cycle. I’m glad you have the support for that.

I glad you checked back in. Being able to tell us.. look I did this.. is just like telling CVS. I’m not afraid of you anymore. The more confident you are, especially with overcoming the CVS struggles, the less it affects that anxiety.

We still struggle with emergency rooms.. but because we have a good physician, we know that getting fluids is the focus of our ER trip. That will get us to the doctor or through a couple days until we can set up infusion. It’s knowing that YOU are in charge. Not CVS.
Thank you for sharing!

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Blynda
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kaleach0307

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Reply with quote  #15 
Ginny and Blynda - thank you both for the kind words!

I will definitely bring up the topic of Dr. Drossman becoming a medical adviser for CVS.  I'm not sure if either of you are aware but he is no longer at UNC.  He went into private practice with his own office - it is now Drossman Gastroenterology.  I gathered from him (indirectly) that there were just too many politics controlling everything.  The problem with that is that he thinks "outside of the box" like I mentioned earlier and that just doesn't go over very well with some people and insurance companies.  The only problem is that he only takes BCBS in his practice so I pay out of pocket for my visits.  However, he became very generous with his time that he gave us (while we were both in school and living on ramen noodles) and regardless of our situation at that time he made sure that I was taken care of.  Even now, with both of our full time jobs and our ability to pay, he asks if a certain fee for his service is okay...he simply just wants both myself and my husband be and feel the best that we can.

Also, after reading over what I said previously, it sounded as if Dr. Fleisher wasn't properly treating me and that is not the case at all.  He tried everything...and I mean EVERYTHING to help me but for some reason I wasn't meant to get better at that time.  When we arrived way back when in Missouri, he directly admitted me to the hospital because I was in the middle of a horrible episode on the entire car ride from Texas to Missouri.  I was in the hospital for 2 months straight at that time.  Sometimes, he would stop by my room and just sit in there while I was sleeping...at one point, Adam said he stayed in there for 2 hours just observing and making sure I was comfortable.  Anyways, I just wanted to clarify that.  I owe my life to Dr. Fleisher - he is the one that diagnosed me after 10 years of not knowing what was wrong.  He got me to where I am now in a way and I will forever be in debt to him.

I will absolutely drop by and become active here.  I think it will help with providing me therapy in a way for me to face CVS head on and hopefully I can help someone by offering a kind word of encouragement. 

I also wanted to let y'all know that I did NOT have a CVS episode today - I thought I was going in to a full blown attack when I woke up and began vomiting...but I was able to abort it.  I believe that talking it out and venting on here earlier helped relieve all of the stress and anxiety that I've been holding on to which is a huge trigger for me.  Thanks for listening y'all!  I won't be a stranger.

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Kiley Leach
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