Hi everyone,

You might have seen me posting here sometimes earlier. I am one of those stubborn cases which refuse to heal. After 2 LIS surgeries I still have pain, sometimes pretty severe. This has effected my emotional and mental well being also. Needless to say, my quality of life is very poor. I was recently told by my boss that my position will be discontinued starting August. This, combined with my health issue has wreaked havoc on me.
After some thought though, I have realized that losing this job might be a blessing in disguise for me as it will force me to focus on my health first. I have had this issue for almost two years and there have been some morning where I have cried in the shower and literally dragged myself to work.
Anyway, I have been suggested by family to get after this problem more aggressively. They feel that I am being pushed around from doctor to doctor in the NYC healthcare mafia. Im not satisfied with how doctors refuse to take ownership of the problem and just keep telling me that this doesn't seem related to their field of expertise. Looks like my next stop will be the Mayo clinic in Rochester, MN. The earliest appointment I got is June 10 and they advised that I first see a GI (dr. Szarka) and they will take it from there. I really hope that they can work as a team of specialist with real talk and tests between themselves rather that shrugging their shoulders and telling me to see someone else.
I am filled with anxiety as I will have to travel and stay there for at least a week with my husband. In an unfamiliar city, with no one we know there, I am scared. Also, I am scared that may be they will tell me that this is a chronic problem with no real treatment. Do I sound crazy? I don't know what to do... I have all these trust issues with doctors and on top of that my anxiety levels are through the roof.
Any advice or encouragement is really appreciated
Thank you!

Hi SSK,

I think you probably know where I stand on this already, but I just want to offer a few words of encouragement anyway. I think it sounds like an excellent idea to go to the Mayo Clinic and have more coordinated care than you're getting be shuffled around from specialist to specialist in NY. It also sounds like you are making the most of your employment situation by choosing to focus on your health. My main grievance of my healthcare is that there has been ZERO coordination between the various doctors I've seen, GI/CRS/Internist/even a psychiatrist because as you well know there have been numerous points during this ordeal when I strongly considered leaping out of my window (only on the second floor anyway). I hope you find that the doctors at the Mayo Clinic actually *speak* to one another, and perhaps then you can find the answers you have been searching for. As for the job, worry about it when your on a more confident path to healing. I'm glad your family is so supportive, and jealous, honestly. As for your fears and anxiety, you might want to consider some medication, or even talk therapy, if you think that would help. I personally consider this forum my own form of talk therapy, but the valium I've been prescribed has really been the only thing my doctors have gotten right in my 2 years of treatment so far. I only take it right before my HBOT, and it just mellows me out and lifts my spirits a bit too. Occasionally, if I have a really hard day, with bloody poop and pain and/or family/job stuff, I take another half dose to get to bed. Chances are, anyone you see would recommend a different type of drug because Valium is of course habit forming, but I was personally too reluctant to take any type of other anti-depressent for fear of worsening constipation or otherwise inhibiting my healing. Just something to consider... as stress and anxiety are completely to be expected from all this and can't be very conducive to healing anyway.

I completely agree with you on that zero coordination part between doctors. It's shocking to me because even in a not-so-medically-advanced country as India, I have experienced nothing but 100% combined efforts by teams if doctors. So if Mayo doesn't work for me, I'm actually going to head back to India, and demand the doctors there to fix me. My family knows all the top doctors there through various connections and it has only been my fear of losing my job, visa status etc. etc. that has had me chained here suffering for 2 whole years when I should have been enjoying life.
Thanks for offering your suggestions about my anxiety issues. I agree that I need to address that as well. The healing has to begin physically and emotionally because the damage has been much too great.
I read that feingold hasn't gotten back to you. I had emailed him too once after his pompous promises of being in touch with his patients via email. Never heard a peep out of the man. I hope he gets back to you soon.

Yea, actually, it's funny what a mess this whole "healthcare" thing is we have going...what a racket in my opinion. That's actually why I was reluctant to go to any form of talk therapy or taking any anti-depressants as well...If these MDs, with literally decades of experience and expertise can't heal what is essentially a minor cut deliberately caused by a surgeon during a simple outpatient surgery, then I'm not taking a single medication that may cause me constipation or blood thinning, no matter how many doctors tell me otherwise. As for talk therapy, I consider the people on the webpage as infinitely more knowledgable and compassionate and easy to talk to than an MD anyway.

And yes, Feingold has not yet replied, 8 days later- however, I am still going strong on my blood-free streak, and my pain levels have actually subsided slightly as well. I figure I'll just let the email slip for the time being and as soon as I have that inevitably dreadful morning where I know I'm still bleeding, I'll instantly call his office and get a spot on the calendar for the kenalog. Good luck with everything.

Hi SSK,

Just to let you know that I have been to the Mayo in Rochester, though not for AF problems. We stayed in a hotel that led via a walkway to the hospital. If I remember, we were there for about five days. If you have any questions, do ask.

Sorry you are in such pain. I am up and down with mine too. Such a darn bore going through all this!

Hi Savaici,

Sorry to hear that you are struggling too. What a waste of time, energy, emotions,and money this thing is. Drains the patient in every aspect.
I thinks it's the Mariott connecting the hotel to the hospital. My insurance in good in the NY tri state area so I still have to figure out what the doctor's fees will be like there. I just hope it's not exorbitant to pay out of pocket. What was your experience generally like there? Were you satisfied with your diagnosis and/or treatment at Mayo?

SSK

I was satisfied. They sent me to different doctors while I was there to have different tests done. I don't recall the expenses being too different from other hospitals, but not too experienced with the US system. All seems expensive after coming from Europe!

The one thing that I remember is that the hospital has different buildings, and my appointments were scattered, but you don't actually have to go outside, if I recall. But, a LOT of walking that I don't think I could manage now, including from the hotel.

Very fancy place I remember. They had a concert piano being played in the 'foyer' and an exhibition of glass sculptures ( I think it was) while we were there.

Everyone was helpful; all a bit overwhelming, but we live in a tiny town and anywhere with more than 3,000 people is overwhelming for me these days :)

Thanks for all the helpful info, Sav.

I live in NY, so I think it will be a break from the city life for me to actually go to a place like MN. I walk long distances here in the city like any other New Yorker I suppose, so hopefully I will be able to manage there. If not Mr. Husband will have to carry me everywhere!
I am so thankful for all you people on this forum. So nice and always a relief talking here.

Sorry to hear about your situation. Have you been checked for anything else that can cause the fissure?

Update: I saw a GI at mayo who diagnosed me with pelvic floor dissynergia and tension myalgia. He said that the fissure has indeed been healed for a while but the pelvic muscles are tight and that's why I have rectal pain. I also saw a psychologist who talked at length about how my anxiety and depression are feeding my physical pain and the mind plays a huge role in pain perceptions. The plan is to start biofeedback or some sort of pelvic therapy and see a psychologist on a regular basis in New York. I have mixed feelings right now. I am relieved that a diagnosis has been made but I also feel that there is no easy fix to this problem and I might have to live with this pain all my life. I am distraught that healing the fissure wasn't the end of my suffering and the issue at hand might actually be a lot worse than "just a fissure" in hindsight.