Thank You And Current Update

[shayden]

Hi All,

I just wanted to take a minute to say "THANKS" to all of you who take the time to reply and help us all out. I know that I have not been around lately but I do check-in and read what's going on and see all the help you are providing for all of us members. I call all of you my online support buddies. If it weren't for all of you...I just know that I would have given up by now. Please just know that even us who just stay in the background most often, very much appreciate all that you guys do!

Well...my health has pretty much been the same since my last post. I still faint and vomit multiple times per day and my Doctors just look at me like they have no idea what to do at this point. And it seems that every single time I go to the Doctor's I receive another diagnosis. I feel like I am just falling completely apart. the fainting is now happening without that much notice so the injuries are bad. I have cracked my tailbone, broke my shoulder, many black eyes and sprains. Ok..so what has my Doctor suggested now....he would like to perform an auto-transplant. I guess what they do is remove your heart from your body and then put it right back in. He said it is like re-setting a computer.

He made it seem like the surgery was common and easy but when I got home, I did my own research and many people (more then not) do not make it out of the surgery alive and the others don't live much longer after that. So I called him and told him that this procedure was OUT of the question since I have a 3 year old child who I can not just abandon. Well...now he won't help me at all. He seems to think that I am not willing to do whatever is necessary to get my health back on track but the truth is...I would do this if I did not have a child but there is just too much at risk.

Have any of your Doctor's recommended this procedure?? If so, what did you think??

Thanks!

Susan

[Dizzy Dame]

Oh, Susan, that sounds horrible! How does he think a such risky procedure will help you? I'd do the same and refuse the procedure if I were in your shoes...there have to be other treatment options out there that won't risk your life!

Have you looked into Mito disease? I don't know that much about it, but I've heard it can sometimes take the form of dysautonomia, but is really something different.

Also, have you been to see Grubb, or Mayo or Vandy?

Sorry I can't offer any advice or insight, but I wanted to let you know that you're not alone in your concerns about the procedure, and I'll be keeping you in my thoughts.

Hugs,

Lauren

[MightyMouse]

Sorry to sound crass, but if you're still getting new diagnoses all the time, how can your doctor be SURE that this is the right procedure for you? This certainly isn't a treatment used for autonomic disorders--perhaps you need a new doctor?

Nina

[Guest dionna]

forget that! never would i let anyone just play with my heart like that! does he think it is positioned right or something? that would the only reason to move it! no i have never heard of that with dysautonomia in any research or any of the hundred docs ive been to. i agree with you in not doing the procedure and i applaud you for doing the research. i am sorry that the doc has given up on you but clearly he wasn't a very good doc to begin with. i wish you the best of luck and i definately agree with the others suggesting mayo, vandy, and dr. grubb. you will find your miracle some place else.

dionna

[Jacquie802]

If I were you I def. would have said no to that "treatment." You need to find a second or even third opinion ASAP. Doctors say that POTS is not life threatening, so why would you have a procedure done that is?!

Post as much as you need to, sometimes having some support makes all the difference in the world!

Jacquie

[nadine]

I don't even know how I would respond to a doctor suggesting this. I hope that you are able to find another physician who may give you another opinion.

[yogini]

I haven't heard of this procedure for anything, let alone dysautonomia. Sounds like you need a second opinion. Are you seeing a POTS specialist?

[mom4cem]

Wow. I have never heard of that one. I would have said no also. I agree, it may be time, if you have not done so already, seek out someone like Dr. Grubb to take a look at everything going on, run tests and hopefully come up with a game plan.

I wish you all the best

[sstephan]

How is you present quality of life? Are you able to care for your three year old? It sounds as though the fainting is quite severe but I would find another doctor for a second opinion. I noticed that you are from Ohio. What about the Cleveland Clinic? Please do not consider this without getting other opinions.

Susan

[Sophia3]

Excuse me but that doctor sounds CRAZY. I have never heard of such a procedure and to downplay it, is absurd.

My late brother in law went thru a successful heart transplant for 9 years. It sounds LUDICROUS to suggest such a thing. to reset your body's computer?!?

Please FIRE this doctor.

I would NOT expect ANYBODY to RISK SUCH A PROCEDURE.

[sally]

Wow, I have never heard of such a thing. That IS scary!

maybe seek out another opinion (or two/three) from another facility and physicians regarding your health before doing such a procedure especially since you've read possible bleek outcome from it.

I don't blame you for not wanting to do this. The only restart I've ever heard of is using medicine (via IV) or shocking the heart via paddles to stop extremely rapid heart beats that get out of control to put the heart rate back into a normal rhythm..

Best wishes sent your way and hope you find answers soon better suiting your health.

[MightyMouse]

Okay, Sopia said what I was really thinking, but the moderator and administrator in me kept it inside. However, the more I've thought about this, the more I think your doc is absolutely crazy. The heart is finicky about restarting even in the healthiest of bodies--so the chance that you would have a harder time given your poor health--I just think it's nuts.

Also, if your doc is on the "reset the computer" kick, why stop, remove, and restart the heart? The brain is involved too. Also, if you possibly have EDS, no amount of tinkering with the computer will fix the problems. The heart, itself, may not be the problem. Tachycardia and BP dysregulation could be the result of your body having an underlying condition (like me having EDS) and the body is responding perfectly.

Have you been to the autonomic specialists in either Cleveland or Toledo? Was this recommendation from the Columbus autonomic docs??

Nina

[Sophia3]

Nina, sorry if I sounded harsh but geez. This is one insane suggestion from a Dr.

LIKE YOU said, the brain is involved. IF ANYTHING, i would think something like shock therapy or ECT (electric convulsive therapy) would be a better attempt.

Yes, ECT is used for depression but do folks know what that does? It reboosts the neurotransmitters in the brain to RE SET thought processes. Off shoot of that is CONNECTIONS to other body parts.

So while most of us are depressed SECONDARY to our illness, I would be MORE TEMPTED to do ECT if I thought it would help me. SSRI TRY to do the same thing.

I know a couple of women (non ANS pts, one bipolar and one SERIOUS depression) who have had it and benefitted from it. Although both had temporary bits of amnesia and some memories never came back so THATS SCAREY in my book.

INTERESTINGLY enough, much like we get a tolerance to meds, some get a tolerance to ECT and it doesn't help as much or for as long....I have seen some women suicidal struggle withi horrible depression and ECT fixed some for good, and some temporarily.

So it's all a LONG shot re activating the brain thru meds and ECT is a final step that should only be done after multiple opinions for the individual case. But also remember, HEART surgery causes depressioin because when they shut off the blood supply to the heart to DO SURGERY, it starves the brain and can cause HORRIBLE depression that often can not be fixed.

So, good luck on getting another opinion as an ans specialist is your best bet. I am sorry your doctor tried to insult you with such a treatment.

Hang in there and find a better doctor. YOU DESERVE IT.

[ariella]

hi

Just to add my 2 cents

I don't like to suspect anyone, but it's awfully strange that the doctor would not be more understaning of your not wanting to risk this surgery.

Any way of verifying whether he is involved in researching this procedure, and you would therefore become his gineau pig? What does he lose by your refusal that would compel him to not advise you of the risks and then to be unsupportive of your decision not to take those risks?

hope I'm way wrong.

food for thought.

Ariella

[futurehope]

Well...now he won't help me at all.

My opinion is that the above sentence is the outcome he wanted in the first place. He wanted to get rid of you as his patient because he doesn't know what to do. So he gave you a suggestion that is so "way out there" that he knows you won't comply and you'll "fire" him. It may be easier than saying, "I can't help you anymore."

When a relationship between two people is going poorly, sometimes an uninterested party finds it easier to "act poorly" than to come right out and say "the relationship is over". By acting poorly, they hope the other party dumps them.

I think your doctor wanted you to dump him (or her).

How's that for a theory?

[ariella]

How's that for a theory?

A lot nicer than my theory!

[MomtoGiuliana]

This is not a standard treatment for autonomic dysfunction. Not sure what conditions it is used for--if at all???

Can you see a specialist? Sounds like you need to see an autonomic specialist.

Katherine

[shayden]

You guys are great and Yes...I would not have this surgery no matter what. I kind of think the theory that he wanted to use me as a guinea pig could be the correct one but who really ever knows what these people are thinking. If he wanted to get fired, well...he got his wish.

Currently, I see a cardiologist in Columbus named Dr. Theordore Fraker who used to work out of Toledo. He is actually the Doctor who hired Dr.Grubb on at the University in Toledo. I like him and he thinks I am doing all that I am able to do and is willing to proceed any way that I would like. However, Dr. Grubb has been my specialist for years and I never proceed with anything without discussing it with him first. He laughed at the auto-transplant idea and said "People just do not understand the complexity of POTS and they just make things up".

I just don't think I am out of options at this point but it is really getting hard to think of anything else that I can try. When I said I keep getting diagnosed with different stuff...here is how it has gone:

Low Blood pressure - '00

Hypoglycemia - '00

Vasodepressor Syncope - '00

Tachycardia - '00

POTS - '01

Mitral Valve Prolapse - '05

Arrythmeia (?) - '05

NCS - '06

As for my "quality of life"....it pretty much is awful. I stay in bed or my recliner most of the time and I am unable to do any form of activity that would raise my pulse or I will faint. I have been on disability since about 5 months after giving birth to my child and I am just not seeing the light at the end of the tunnel.

I am going to do some research on the conditions you all suggested and see what I come up with.

What is EDS?

Thanks again for all of your help!

Susan

[Laura]

Hi guys! This procedure has been in use since 1985 primarily for conditions like tumours on the heart, or aortic valve disorders. I did find a couple of articles of studies done on animals with autotransplants for study of heartrate and blood pressure control. From the American Heart Association. Doesn't give too much info unfortunately, but might give you a better idea of what your doctor was thinking. Hope this is ok to post....

http://circ.ahajournals.org/cgi/content/abstract/35/4S1/I-96

http://circres.ahajournals.org/cgi/content...ract/18/S6/I-86

[MightyMouse]

EDS is a collagen defect, genetic. It's short for Ehlers-Danlos Syndrome. You can read about it at http://www.ednf.org

Also, Michelle Sawicki has put cross links to research relating EDS to some types of POTS and NCS (I have everything on your diagnosis list, plus add gastroparesis/slow gastric motility, and degenerative joints throughout my body, including my spine, migraines, nerve damage from my hypermobile joints). You can find that info on the main dinet site, under the listing "mechanisms" in the left margin.

I have the hypermobile type, Michelle has the classic type (so does my mom).

I'm so relieved you've fired your doc. What he did was wrong. He has what is called a "duty of care" to help you in a way that also protects you from harm. I can't see how is wacked out idea keeps you safe and on the path to wellness in any way, shape or form.

nina

Laura, I found the same articles. The basic gist for you all here: they put the person on bypass while they fixed the heart, then put the repaired organ back in. Most of the surgeries were for tumors, cancers, and other major heart malformations. I couldn't find a single article on using it to reset the ANS.

However, I vaguely recall something like this surgery being done on "House" which is a fictionalized version of a real doctor (Sophia, I know he's your 2nd favorite medical crumudgeon, with our mutual friend Lloyd always being first--do you remember the episode I'm talking about? I think it was a little girl? With cancer?). I can tell you that if they took the same liberties they did with showing the Tilt Table Test, then I can tell you it's probably far from being a "realistic" treatment for anyone except those so close to death that there are no other choices.

Nina

[Sophia3]

Nina

I LOVED watching House but had to stop as the fancy MTV like weird camera movement would trigger vertigo/motion sickness. So I didn't see that episode you mentioned...I don't think...I also missed the TTT and heard it as ludicrous. I wish that show would do away with that camera work as I got a kick out of that curmudgeon, indeed. And I am glad they got rid of that CEO jerk that watched every move House made, last season, I think. I stopped watching a few episodes after Sela Ward joined, though I LOVE HER! (Do they still do the speeded up camera work stuff?)I tried learning to close my eyes for the camera work but......

The DEPRESSION by- pass machines creates on top of the risks!? To suggest that as a viable option for ANS, is scarey.

I would hope ALL pts get second and third opinions when they dont' agree with an ?option?.

Also, FYI, ALWAYS get your own second opionion. and not some doctor the current doctor "suggests." Docs often agree to benefit each other referrals and surgeries and therefore, dollars.

Shayden, I am glad you are not looking at this.

Talk about a doc that is more concerned in a science experiment than your life...Pathetic

But I have said more than enough on this subject.