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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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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 fiancĂ© 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 fiancĂ© 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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