nunntrio

Please let us know what the cardio. thinks about nutcracker syndrome. I have mentioned before that I have been treated for PCS but I still think I have issues that way. I have a cardio appointment next week and am going to mention the idea to him. I just reread the surgery report from when I had my Left ovarian vein embolized and they mentioned that there was evidence of reflux in the left renal vein. I believe they did a venagram while I was under sedation for the embolization. I did not understand a lot of the report the that caught my eye. Thank you for your research into this.

By the away, I agree with your rant.....I wish I could find a DR. willing to look into the cause and not just throw beta blockers at me.

My wife went to Vandy for the two weeks of testing. She left with a POTS diagnosis and not much else. She was basically a test subject for different types of meds. Unfortunately, she can not tolerate most medications. So, this became quite an ordeal for her as she suffered through the various side effects. She was not helped by any of their drug trials at all. Overall, we did get a generic diagnosis; all of the people there we friendly; we are glad she did it; we are no closer to resolving her situation.

If you'd like her take, please send us a private message and I am sure she will respond. Best of luck to ya.

Please keep us posted on this. I have battled PCS and suspect it is at least partially behind my POTS. This Nutcrack condition is listed as one of the causes of POTS on DINET and I have actually begun to wonder if this my somehow apply to me. Please let keep us posted about what you find. Thank you for posting

I replied to you on an earlier post in regards to this and I have had this procedure done. I was diagnosed based on a pelvic MRI that showed reflux in effected left veins. My Dr. said that this condition can be hard to detectd becuase most MRI are done lying down which the problem harder to see. Luckily for me mine showed up even in the recumbant position. I believe you can also have a venagram done. I believe my Dr. did one of these on me during my procudures but I can not be sure. Reflux was described to me to be where the valves of the veins do not close all the way causing pooling. The procedure for me was very easy. It was done at the hospital but I went home that night and the recovery was minimal. I was basically functional the next day. If you would like any other info. I would be happy to give it to you. I have had a lot of vein problems and had a lot of different treatments. I hope this helps your daughter. She is very young to have to deal with all of this.

What compression rating do you use for compression stockings?

My 18-year old daughter has used 30-40 waist high stockings for the last 4 months. Initially they seemed to help quite a bit, although now it seems that the 30-40 stockings are not as effective anymore (even brand new pairs). So we are going to go get her a pair of thigh high 40-50 stockings.

I read a testimonial of a POTS patient that got significantly better when they switched from a 30-40 to 40-50. We figure it is worth a try.

The other reason we are switching is that we found out our insurance will no longer cover 30-40 stocking. They will only cover stocking with a minimum compression of 40.

My daughter has also been helped significantly with an abdominal binder, especially during the 2 weeks every month when her pelvic pain gets extreme. We will continue with that.

I can not give you any advice about increading the level of compression stockings but wonder if you have ever looked to Pelvic Congestion Syndrome for the pelvic Pain. Dr. Peter Rowe (I think that is how you spell his name) who is a POTS treating pediatricain at John Hopkins believes it can be a contributing factor to POTS. The good news about this is that there is a simple procedure that can be done that has been shown to help. It is call a left Ovarian Vein Embolization. When you mentioned your daughters pelvic pain is sounded like something I have had to deal with. Anyway I just wanted to mention it.

I also have postterior neck and head pressure. I do not get the pressure in my eyes but I do in my ears. I feel like ears are going to pop. Luckily I do not have the pain. I have always wondered what this was. If you find out let us know!

They don't think it's contributed to my POTS. I had an enlarged heart after baby #4 and it was only pumping half strength and it could have contributed to that along with the strain of pregnancy. They don't think it's contributing to my POTS though. The enlarged heart has resolved now and my pumping strength is back to normal. A TEE (trans esophageal echo) is where they sedate you and put a tube down your throat to get a different angle of your heart. It's probably in your future if you haven't had one done yet. It wasn't awful at all, don't remember any of it in fact. Let us know what you find out! Hope it's good news!!

Brye

Thanks I will keep you posted. The TEE does not sound like fun...Yikes

I had a bubble echo that diagnosed a hole about a year ago and then a trans esophageal echo that diagnosed a PFO (Patent Foramen Ovale) I got all excited thinking maybe there was something that could actually be fixed to relieve my POTS symptoms and cure my problems. No such luck. I take an aspirin a day to prevent a stroke and there's no need to fix it. It's apparently not all that uncommon and guess since it's been there since birth and not caused a problem no treatment necessary. I guess that was the good and the bad news for me. My grandma and all 4 of her kids had congenital heart defects as well so there's a big family history for me. Did they do a TEE for you? I guess that's how they tell better how big the hole is.

Brye

I have a feeling that is very close to what they are going to tell I have been trying not to get my hopes up. I do not know what a TEE so I probably have not had one. However, I have yet to actually talk to a caidiologist about this. Do they think your heart condition has anything to do with your POTS symptoms?

Thanks everyone for the replies and encouragement to look into this further. I do plan on going to the cardiologist. I got the referral paper work in the mail today. I will post when I know more.

To make a long story short I had an echo done and they found a hole in my heart. I was told this is a realitively comon problem in that up to 20% of people have this. It is a opening between the left and right heart chambers that is suppose to close at birth and mine never completely closed. There is an offical name for it but I can not recall it. Anyway there was some mild shunting going on. Origionally the Dr. office called and said just to monitor it and come back in 6 months for a repeat echo. Then out of the blue the Dr. office called several weeks later and wanted me to see a cardiologist (this is at Baylor in Houston). The nurse said the internist consulted with the cardio and wants me to come in. Is there any chance this could be causing or at least contributing to my POTS symptoms? I really do not want to drive down town and pay another copay just to have another Dr. say these results are basically normal. I have done that before. I also do not want emotionally go through this roller coaster. I know I will still go but does anyone think this could be anything?

Thanks

Is Dr. Goodman going to follow up and treat or does he just basically do the diagnosis? I hope you do not mind so many questions. As I said I am in the process of researching where the best place for me to go might be.

Thanks.

Is sounds like they really did a good workup. Can you tell me what test they ran that showed the vasomotor problem in the legs? I suspect I may have a bit of this as compression stocking are the only thing that helps me. To answer you question, waist high are the best and make the most difference but they can be uncomfortable. I sometimes wear tigh high ones if I am not going to be on my feet too much.

Did you see Dr. Goodman at Mayo? If so do you mind sharing a little about your experience? Do you feel like he really listened to you? Would you recommend him? I am looking for a Dr. to help treat me and not sure the best place to go. Thanks and I am glad you have gotten some answers.

Does anyone else vomit with pots? Sometimes when I have a flare up of both tachycardia and stomach problems (mainly dirrhea) I sometimes vomit, especially after larger meals. I get a lot of stomach bubbling and gurgling too, rather like a witches couldron Is there anything that can help with this? I find it really hard to live with.

I have bouts of nausea upon waking the morning and on occasion vomit. It actually feels like morning sickness. It is very weird actually I wake up some morning and have to run to the toliet. I have not found anything that helps but mine sounds a little different then yours.

I'll quote the great guru, wikipedia, about shunting:

A pulmonary shunt is a physiological condition which results when the alveoli of the lung are perfused with blood as normal, but ventilation (the supply of air) fails to supply the perfused region. In other words, the ventilation/perfusion ratio (the ratio of air reaching the alveoli to blood perfusing them) is zero.[1]

They describe a shunt in the lungs, but a shunt can occur in other tissues, such as the heart or the brain. The bottom line is that there is blood flowing to the area (perfusion), but the exchange of oxygen and CO2 is not happening (ventilation). The tissue is just not being fed.

Since the PET shows the working of the brain by showing glucose metabolism, the poor oxygenation would show up as hypo-perfusion or hypo-metabolism.

I'm a nurse, but certainly not a neurologist (not even a neurology nurse so that's the best explanation I can provide.

You can have a physiological abnormality, which would show on an MRI, or a functional abnormality, which would show on a PET, or both, or neither.

Dr. Low's explanation made sense to us in light of Michael's abnormal PET/SPECT scans - which have no other explanation. BTW, his MRIs were normal. At least in junior high.

Dianne

Thanks for your explaination. I understand it at least on a basic level. So you mind if I ask a few more questionsDo not know why the ventilation (exchange in oxygen and CO2) is not happening? Also, I understand the difference between a PET scan and a MRI but is there a difference between a PET and a SPECT?

Thanks!

This is yet another one of the tests I have had. It is more uncomfortable then the QSART but I would not consider it painful. I would agree that unpleasant would be acurate way to put it. I wouldn't worry about it to much (I know that is not realistic)

My insurance company initally denied my TTT as not necessary. I appealed it and pretty quickly got it overturned (A copy of my test was sent to them showing I failed). My Dr. was actually willing to help out once I contacted them but I am not sure if that is the norm. Everyone is correct that there is time limit to file the appeal so I would not hesitate in getting it started.

Good Luck

I don't know about MRI, but I think the PET/SPECTs might be different. When Michael was being (mis)diagnosed with a seizure disorder, they did these tests, and found areas of low perfusion. At that time, they felt that was the location of his so-called partial seizures.

When we mentioned this to Dr. Low at Mayo, he agreed that this would be likely with POTS. If I recall correctly, he indicated that there is a physiological shunt going on in POTS that takes the blood flow away from certain areas of the brain and helps to account for the brain fog.

PET measures glucose metabolism, so it's more a measure of functional than of a structural abnormality.

Dianne

Interesting. I have actually had a SPECT scan done (they did this looking for something else) and it showed a "mild pattern of global Hypoperfusion". My most significant symptom by far is brain fog. What exactly in a physiologiacal shunt? I have also had an MRI that was clean.

I know a lot of us have chronic sinus troubles, does anyone have any effective remedies or treatments for sinus infections? I just took an antibiotic last month for one and this morning woke up with that same sinus pain. I don't really want to take another antibiotic so soon, any suggestions?

My son has struggled with these for years. Have you tried the NeilMed Sinus Rinses? He has found these helpful.

I am in the same boat as you. I always feel better mid cycle I believe that is when the hormones peak:> I actually look forward to that time because I get a mild break in symptoms. There was a tread a while back that posted a study talking about this. Here is the link http://dinet.ipbhost.com/index.php?showtop...=Levine+hormone

I have had a QSART and it is really not that bad, it only took about 20 minutes and there was only mild discomfort involved. I would not worry about it from that prospective. I do not remember it being to expensive, I can not remember the exact cost. My was covered by insurance covered mine with no problem. I agree with Arizona girl that if you can get the small fiber neuropathy documented it is well worth it.

I agree that most non POTS Dr.'s do not understand how debilitating POTS can be. I agree that it is worth looking into your surgery options, if for no other reason just to know what is out there. Good Luck and keep us posted!!!!

I have that same crunching sound but my neurologist would not look into it. He said "that is just what necks do" ugh!!! Did you have neck pain or any other symptoms with the crunching? Did your Dr. recommend surgery? I can understand how this is a hard decision. I am glad to see you have got a strong lead about the cause of your POTS. I think that is something a lot of us are searching for!! Keep us posted.

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

I am glad you are feeling at least back to your normal "pots" self. You are very lucky to have a Dr. that is willing to keep trying, that type of Dr. is hard to find. I hope you did not mind me asking, I certianly did not mean anything negative by it. I am actually impressed that they are at least willing to try. I really need a POTS Dr. that is willing to do follow up care.

Sorry you are feeling bad. I have never even heard of tilt training. Did your Dr. in Dallas recommend it? I can say that I have had some horriable experiences with some treatments Dr. recommended. I once tried to tilt my bed per a Dr. recommendation and that left my feeling awful for days.

I hope you start feeling better.

Looks cool. I would love to get some POTS reviews as well.