Met with my Dr. re surgery

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Met with my Dr. re surgery

Postby Guest » 07 Dec 2007, 13:08

Well, met with my CRS today, and she recommends surgery immediately. She wants me to do it asap since the fissure is so deep (into the muscle) and is causing so much pain. Here's my dilemma: She wants to do it either on the 21st or the 26th. My pain specialist (I also have Fibromyalgia and Myofascial Pain Syndrome) is very hard to get in touch with over the holidays and he will be the one prescribing any meds for me. And my CRS has a real problem between herself and the her assistant.
I think it would be wiser to have the surgery at the beginning of the year, when my pain specialist is easier to find, and when my CRS will definitely be in the office, since she wants me to come in weekly after the surgery.
I'd LOVE your input here. Oh, and she did clarify the type of surgery. It's an open LIS. She said she wouldn't cut the entire sphincter muscle, either, but just part of it, so as to try to retain it's strength so I'm not incontinent and flatus. That made me feel better.
Comments or suggestions?
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Re: Met with my Dr. re surgery

Postby buttgirl » 07 Dec 2007, 13:14

hmmm. I would schedule the surgery and insist that I speak to my pain specialist--but that's just me. I get impatient when it comes to these things/ i always figure the sooner to operate, the sooner to heal. S/he can probably prescribe something early for you is s/he doesn't want her hoiday interrupted. Hopefully, she can prescribe back up measures as well.
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Re: Met with my Dr. re surgery

Postby Guest » 07 Dec 2007, 14:08

It sounds like you would be more comfortable waiting. I might just do it to get it over with and start healing but I understand your concerns. People tend to vanish over the holidays but someone should still be on call. Butit might be a slower time for your family in terms of time off so they can help look after you. And for me, I am trying to get things done this month before I have to meet a new deductible next year.
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Re: Met with my Dr. re surgery

Postby Fissulyna » 07 Dec 2007, 14:24

Hi there : ),
Since I have Fibro too, I just want to add that it is important that you get local anesthesia on the incision site regardless of what other kind of anesthesia your CRS is planning to use so new trigger point will not form. That info I found in one of my books about Fibro and MFC. I wish I had my LIS as soon as I got my fissure because I was in remission for 10 years regarding Fibro . Not eating well, not sleeping well, being in constant pain and disastrous acupuncture session made my Fibro return just in time when my fissure started to heal : (((.
I don't know what to advise you about timing in your case : (. If your Fibro and MFC are under good control get rid of the fissure as soon as possible. CRS should know about pain meds - what can mix and what can't !
By the way, would you be so kind to tell me what meds you find useful in controlling Fibro and do you use any alternative methods - it's been 10 years since I hadn't have to deal with his awful stuff. Now I have to start all over...
Thanks in advance ! @: )
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Re: Met with my Dr. re surgery

Postby Guest » 08 Dec 2007, 13:55

Thanks to all who replied. I really appreciate the time you took, sincerely.
Fissulyna, I'm sorry you suffer from the same condition as me, but it is nice to have someone on this board who also understands the multiple complications we endure.
As for the pain control, I wish I could say that it was under control. I was so happy when Lyrica came out, I wanted to jump up and down -- there was hope after all, and there were actual commercials to advocate our problems to the public and to add realness about it.
Unfortunatelly, I am highly allergic to Lyrica; I break out in terrible blisters from it. So out went that drug. I've got a very understanding Dr. who has a wife and daughter with the disease, so he places no questionality to the disease whatsoever. He is a neurologist. The downside for him is that he is so busy that I rarely get to speak to him unleess it is an actual appointment, and his staff annoy me to no end.
He has worked tiredlessly with me to see what works. It began with Ultram --had really bad out of body experiences. Remember, this is the pain only that I am addressing, not the other stuff -- I have a long list of meds I take that help in other areas such as sleep, RLS, trigger points with regard to my MPS -- it then went to Lortab, then Norco. We had no success, so I tried the Duragesic patch. THAT helped immensely!!!! I don't know what I'd do without it. You, if not already on one, will have to work with your dr. to obtain the correct dosage for yourself. I change it out every 48 hours rather than 72, because he know it does not last 72 hours on me. For breakthrough pain or for days when I have flares, he has tried me on oxycodone, and now we are working with oxymorphone. I cannot say that this is any better than the Norco was though. I work daily on my warm water therapy, and that helps a lot, too. The key there, though is knowing and adhering to your limits.
If you EVER have any questions, please feel free to ask away. I am a research freak when it come to my FMS and MPS because I want to be drug. free one day. It took him a while to make me understand that I am not becoming a drug addict, but rather dependent, so that I might lead as normal a life as others do. I never have pain less than a 2, but when my pain is at a 2 I rejoice and thank God! That, for me, is a HUGE thing! I have accepted that I will always have pain, but by taking care of myself, knowing and accepting my limits, and living as healthy a life as humanly possible, I am doing my part.
I have lost a lot of friends throughout this. I used to be very active. I am not anymore. It has become lonely. BUT, you know what? I have my amazing husband, my two kiddos, and my faith. You learn who cares, truly, and give thanks for those people.
Again, feel free to ask any questions at all at any time. I'm here for you.
Gentle hugs,
NW
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Re: Met with my Dr. re surgery

Postby Fissulyna » 08 Dec 2007, 14:57

Dear "Lone Star" , I appreciate your response immensely ! I was crying reading it because I can relate to every word and every feeling you were saying - from loosing friends to purposeful ignorance of our condition by medical community. You are so lucky to have a doctor who not only understands your condition but has family members affected by it !!! I am having hard time finding doctor who treats Fibro patients - they all keep us at 9 feet pole distance : (((. So far, I found only one and he can take me in January for the fist exam. Till then I will have to deal with pain and the rest the best I can by myself. I am still in disbelief that it actually really returned after 10 years - may it be of comfort to you to know that sometimes it can go away. Just 4 month ago I was like Energizer Bunny, doing so many things at once, taking care of the house and huge garden, planting 15 gallon trees and amending soil by hand - now can hardly type this letter. All of my friends are waiting for me "just to snap out of it" and in the mean time disappeared until it happens : (, so I know how betrayed you feel. Yes, for me too, my family and faith are the only things that are sustaining me.
I am so happy that I had a chance too meet you on this forum, what were the odds anyway ???
I will have a million questions ; ) regarding our condition but in the mean time, I want you to know that you will find here the most wonderful people in the whole world - all will be here for you to answer any question and to give genuine support and concern. Like a God said - "all the chosen ones for heaven shall have a fissure" ; ))), ha ha. We all must find some humor in all of this nonsense or we will all go insane ; ) !!!
Gentle hugs to you too dear friend. We will survive .... XOXOOOOOooo...
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Re: Met with my Dr. re surgery

Postby Guest » 08 Dec 2007, 18:10

Dear Fissulyna, it is lonely, isn't it? It's a sad commentary that those we felt were our closest friends no longer want us in their lives because we are no longer the same person -- in their minds. I am the same person, but with limitations. I want to be included, invited, called. You never know how that day will be until you live it, so of course I want the invite!
It hurt very badly at first, but we are not entering year 3, and my acceptance has just become rote. That, too, is sad. I wonder sometimes, if I died, how many would actually show up? Seriously, they don't even know the "me" that I am today or what is going on in my life, with regard to me, my children, my husband, anything. Therefore, my faith has strenghthened. I guess it either will get stronger or weaker. Thank heaven mine is stronger, and has taught me much more about compassion.
I am sorry that you have had such a hard time in finding a doctor in your area to help you. I am a member of an excellent FM group, and if it isn't against the rules of this board, I can post the site for you. You will find that they have a listing of doctors that include many, many areas. And if it isn't listed, you can post your location and they will answer with the closest doctor they know of that is good. I LOVE that group. They are compassionate, soooo understanding, and completely understand our needs, as each one of them have our disease.
Just let me know, hun, and I will send you the info if it is okay.
And, yes, I believe there is a reason that we found each other on this of all boards, as well! Go figure, huh?
Again, gentle hugs.
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Re: Met with my Dr. re surgery

Postby Fissulyna » 09 Dec 2007, 15:12

Dear "Lone Star" XOXO,
I understand every word you are saying, every thought you have. I also can't understand what happens to people when somebody gets sick - I started openly teasing my friends that neither fissure nor fibro are contagious , ha ha, especially not through e-mails !!! I asked one why is she not calling or writing lately and she said "pouting" - "well, you did not invite me lately for coffee...", you just see how they don't get it in what situation and pain we are in- maybe I can't have coffee out, but can have tea at my home , and maybe not any day or at any hour but how about inviting me to her place ?! So many times when they were sick with simple sniffles and such I would call or write daily to ask how they are doing . Just silly ...
I would be very grateful if you post the link for your fibro support group , I don't think it is a problem since members here post links often. The listing of doctors would be a lifesaver!
Take care my friend, and thank you so much for all of the information so far. We will get better somehow sooner or later ! I hope that your fissure is getting better. Did you decide what you will do about surgery? Ask your CRS how often she performs the procedure and how many she did over the years - if she is in practice for more than 10 years and did over 500 she must be pritty good. Also ask if she ever had anybody becoming incontinent - she can't lie about that. Be prepared that she would probably say that not so far but that it can happen "next Friday" - they will all say that because they have to protect themselves from lawsuits. Don't let that alarm you if you decide to go on with that venue - chances are VERY slim and as I said - I wish I did it ....
Hope to hear from you soon : ),

XOXOOOOOOooooo...
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