khudsonwv

i have had a total of 11 ablations - 10 of which were in a marathon 8 hr procedure at the university of virginia. i can honestly say it was not fun and probably would not do it again. The first one i had done in WV and it was no problem at all. my recommendation is to totally know the risks. my heart rate ws 260 and was ruining my life. i had the ablations done before i was diagnosed with POTS. - unfortunately the ablations sent me into complete heart block and now i have a pacemaker. was it worth it? probably - its hard to live with a HR in the 250-260 range. Just know what can happen and decide if its worth it for you... and yes you can still have tach after ablations.. Good luck to you - hope all goes well

Ariella - I have been tested three times for it - all came back negative but neuro still feels I fit the diagnosis.. not sure what your symptoms are but - mine are extreme muscle fatigue that comes on with very little physical activity - muscle biopsy showed progressive muscle loss.... i have a foot drop once i walk too far and i have become quite the clutz - falling all the time because my legs just give way. this with the POTS symptoms have totally wiped me out...... i dont know how one dx effects the other but i feel they are definately related - all of my symptoms hit at the same time. not sure if this answers your questions but you are the first to mention this so I was a little surprised.... best of luck to you Kim

I appreciate everyones responses..... trust me i understand how delicate the issue is and i am not trying to stir up a political debate - i simply wanted some opinions on it or any new input anyone might have. My husband is in the medical field already and is trying to advance his career and sometimes his papers have to be on sensitive subjects.. i believe that if a few people hadn't pushed a few delicate buttons in the past we wouldn't be as far as we are in the medical field and our ability to survive many illnesses that would have killed us 50 yrs ago.. again I thank you for your input and look forward to any other opinions..

I know exactly how you feel - heart rate was raacing to 255 bpm so i had a total of 10 ablations - 1 in one procedure and 9 in the next... this was prior to being diagnosed with POTS - ANSD.. I felt horrible after it and thought i was going to die... I would drop to 40 bpm with BP of 70/40 ....turns out it had put me into complete heart block and we did the pacemaker insertion a lil less than a year ago... still feel bad - heart rate cant drop below 60 now but still wants to run up and down (weird feeling) - now on total disability --- ablations are definately not the way to go -- I thought it would be the answer and learned to be careful what I wished for!!! best of luck - hope you start feeling better

thanks for the input Ann.. his paper is researching the pros and cons of embryonic stem cells and of adult stem cell use.. and you are right - it is a very controversial topic.. it is nice to get an opinion from people who actual have an interest in the outcome of the controversy........

i was diagnosed with POTS last year - my husband is doing a research paper on the pros and cons of stem cell research and I was wondering if anyone had any opinions on the subject. It is said that with increased research it could solve the mystery of many diseases - POTS included....... any opinions would be greatly appreciated.... thanks kim

Danelle, i received my disability in November... as for waiting so long for your hearing in front of the judge.... speak with the attorney about filing a request to expedite based on financial hardship. you will have to give detailed financial information - but i filed for this and my hearing was 3 1/2 weeks later. You may have to push your attorney to file this request because everyone says they need it - but if you truly show you are in finacial ruin they will speed it up. be prepared to show late notices etc. - anything and everything that shows your financial status. best of luck to you!!!

sorry to hear of your denial - i am 35 - bach. degree - was working on masters) I applied in Jan 2004 - orig denied 5/04- second denial 7/1. saw adm law judge on 8/2? and finally got approved - got check 10/1 applied for dependent ben on the following monday and got their money - 4 days later (crazy huh!!).. i have a lot of good information i would be glad to share - i am exhausted right now and it is hard to type - so i will get with you soon o.k??? it will work out - trust me i know how bad it hurts to think that you have caused your family such financial strain.......

thanks to everyone for their posts. I too got an emergency hearing due to financial reasons - it sped up the hearing but not the money lol.........

I finally had my hearing with the administrative law judge at the end of July and got my ruling Sat - APPROVED!!!! thank goodness - back to December , 2002. it could still take up to 60 days to start receiving benefits - would have been 30 days if i hadn't gotten an attorney ( nice huh!). but it is such a relief to have an answer and to know that the judge actually read all of the research we gathered and understood that POTS can be devastating. To all of those still trying to get disability - hang in there - it is such a long road but it can work out - i had almost lost hope!!!!

I got my rejection letter from Vanderbilt last weekend too. I cried for hours - because you do put a lot of hope into these things. I have private insurance (very good insurance thank god) and they were aware that i was unable to tolerate any meds therefore would be more of a clinic patient than a research patient - they reviewed my records and still stated that they did not think that there was anything that they could do to help me. I am beginning to wonder if anyone can!! Hang in there... the answers are out there somewhere!

first - you might think of getting another lawyer - you need someone to stand up for you. I applied in Jan 2004 and got two denials and saw the judge this tuesday - looks like it went well ( hope hope). I am 35 and have a business degree... just hang in there it will work out - oohh something that helped me - i mailed letters to all of our senators with copies of my medical records/everything about POTS i could find and a letter stating what i had been thru - i also enclosed a picture of my family to make it more personal - my hearing was scheduled within three weeks and i receive letters every few days from my senators giving me updates etc ( election year helps i think).. Good luck - if i can help let me know!!!

Danelle - I first applied in Jan 2004 - denied twice - then got an attorney filed appeal and asked for it to be expedited due to the financial stressors of this. The judge is said to be rough but fair so we will see. I have a lot of different things going on physically which started in Sept 2001 after the birth of my second daughter. I was first dx with paraximal sinus vent. tach, afib, aflutter, and inappropriate sinus tach, syncopy etc. had a total of 10 cardiac ablasions and then went into brady and complete heart block - got pacemaker to control that - still have extremely low blood pressure - now with runs of high blood pressure - but my main problem in progressive muscle loss - i fall alot (daily) and am basically very weak all over - they are not sure why - although a dr in NY thinks that POTS is actually a disease of the muscles ( who knows). Now my lawyer and i just need to convince a judge that this is not in my head....... I will let you know how it goes - i have been told that he will not tell me tomorrow that I will have to wait for a letter...

I was hoping to go there too - however I received a letter from them over the weekend stating that they did not think that they could help me.. I was really disappointed - but i will keep search!! I have heard nothing but great things about Vanderbilt - hope it works out for you!!

i have my hearing with the administrative law judge tomorrow at 2:30. I am a nervous wreck - nearly physically ill - i am so worried about it. I know that i am sick - my doctors have plainly stated that i am permanently disabled but i know how horribly wrong these hearings can go - wish me luck!!!!!

I just sent my app to Vandy yesterday - they said that it looked promising (whatever that means) - UVA and NY docs both would not see me - said that there was nothing else they could do for me because i cannot tolerate any meds and have pacemaker and many ablations.. good luck to you - i have heard great things about Vandy...

danelle - i soooo understand where you are right now. I was just recently diagnosed but i have been sick for two years - I was the breadwinner before and took care of every aspect of our household. now i can do nothing - we too are on the verge of loosing everything - it is shocking what a difference the last two years have made on my family's life. due to 3 heart surgeries and numerous hospital stays - i have hit the $300,000 mark on medical bills - thank god we have good insurance - but we still had $21,000 in co-pays alone last year. I have applied for disability and been denied twice - i go in front of a judge soon and if he does not approve it this time we will be forced to file bancruptcy. I have days were i feel like i am a total failure and a complete burden to my family.. it is really sad that this condition disrupts our lives in soooo many ways.. and before i found this site i really felt like i was alone in this - it really helps to know that someone out there gets it! My husband has been pretty patient so far - but it is stressful for him too....i definately have days where i think he would be much better off with someone else - we are young but its like he is married to an old lady who never feels good and cant do the things we used to do.

Merrill - no - I am referring to my Dr. in West Virginia - Dr. Hoeldtke --- Goldicedance sees him too.... still working on the referral to Nashville - my cardiologist here - Dr. Pettit - has a call into them to try and get me seen there......sorry i confused you - i do it to myself all the time lol

Goldicedance - that is so funny that you mention us driving him crazy - he mentioned you (not by name ) when I saw him - he stated that he had another patient with POTS with a pacemaker that lived in Washington DC. We are the only ones that he has that have pacemakers.... weird huh?! My meeting with him was a little unusual. He called me on a Friday (after being referred by my neuro) and stated that he needed to see me the whole next week. Told me to drive up that Sunday - check into a hotel and to not expect to leave for at least a week. Saw him that monday - he did his own tilt test on me - confirmed everthing - tried me on one med- said to come back the next day and we were going to do a video. Came back the next day sick as a dog from the first medicine he gave me. He tried the second and i had an immediate reaction to it - he told me to go back to the hotel pack my bags and he would see me in Sept. - that since i could not tolerate the meds he wasn't sure what to do. He also got sick during my visit and took the rest of the week off. So it was a crazy visit. Very nice man - spent a lot of time with me - but also left me a little confused and concerned that there may not be help for me since i don't tolerate chemicals/meds.

Jessica - i live in Saint Albans just outside of Charleston - its about a 3 hour drive to see Dr. Hoeldtke - scheduled to see again in september but my cardiologist recommended seeing someone else just to confirm everything. Inititially referred to Charlottesville too - to a Dr. Burns - but i had a really bad experience there with the cardiology department ( thats were i had my ablations last year and it is just really hard for me to go back - i know that sounds stupid but i just can't get the nerve up to go back - its a shame -----it is an awsome town - i was there for a few weeks and they have the most awsome food and the shopping is good too. i have heard really good things about Dr. Burns. Unfortunately Dr. Hoeldtke is the only one here in WV.. have you seen him too??? Kimberly

thank you all for the information - i will pass it on to my cardiologist - and he can contact Dr. Robertsons office to see if he would agree to see me... thanks again

I am seeing a specialist in West Virginia at this time - but because I have severe reactions to the medicines he is using for his studies - he is kind of at a loss for what to do for me... my cardiologist is recommending i consult with another specialist and i would like to go to Nashville if possible. I have family there and I have traveled so much over the last two years that it would be nice to go somewhere I am familiar with. Does anyone know the names of any of the physicians at Vanderbuilt??? I know that they are doing some research but cannot seem to come up with a name for my cardiologist to contact.. any help would be appreciated....

Goldicedance - thank you so much for your entries - it is so great hearing from someone else who is dealing with a pacemaker and POTS. Although i wouldn't wish this on my worst enemy - it is a comfort to have someone who truly understands the difficulties this causes.. thanks again!!!

Karen - it is my understanding from the several docs that I see - as well as description on the POTS PLACE outline - that there is a small cross section of individuals who experience POTS episodes at other times besides standing - my symptoms seem to be positional - as in with standing, sitting quickly, rolling over quickly etc. all cause high increases in heart rate and rapid drop in my BP. My normal HR now with the pacemaker is 70. Movement sends it to a max of 150 now. BP is usually 90/60 goes down to 50/30 upon standing etc.....no one else in my family has this problem and mine only arose post partum. My other arrythmias came on after the ablation so i don't feel that they are related to POTS although i cannot rule out that POTS makes them harder to deal with. As for why i am so weak i don't know - and we are working on it = one of my doctors would like to send me to another specialist who believes that POTS is actual a muscle disorder of sorts. I did not have the muscle problem prior to this.. so i truly believe it is related in some way. Seems like a little puzzle and i just kepp getting new pieces...Who knows at this point I am willing to see anyone who thinks they might have the answers...

karen - the ablations did not take care of the problem and only brought on the bradycardia and 3rd degree heart block - the arrythmias - except for the svt were brought on after the first ablation - i then had nine in one marathon 8 hour session which caused the brady and heart block - i still have the arrythmias but svt is not as bad - my heart can only go to 150 now instead of 250 but it still wants to race higher which causes all kinds of weird things to happen.. syncope is still a problem and i still get really low BP episodes. however most of my falls now are because my legs are so weak. i have 2 EP specialists that i work with and they are great - they call me their "special patient" because ( ha ha ) they have never seen anything like this - it seems that everything we do or try makes it worse. But i know in my heart ( as screwed up as it is lol) that we will find the right answers. if anyone has any ideas - trust me - i would love to hear them....