ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathy M on March 09, 2009, 06:27:33 pm
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Well, I'm back from Cincinnati sitting at home, waiting..... I went to the neurosurgeon today after finding infection for the 2nd time at my incision. Between the time we discovered the infection and the dr. appt today, I've developed a urinary tract infection and have had severe pain in my lower abdomen (a pain that only vicodin could help). So, I shared all these wonderful updates with the neurosurgeon and here's what he says:
The infection is most likely in the skull - that's why it keeps coming back, so I need surgery to remove a small piece of it, debride the wound to clean it up, and I should be good to go. Approx a 1 hour surgery, home the next day.
BUT....he won't do it until we know what is the cause of this abdominal pain, because it is not related to the urinary tract infection (or the AN).
So...I have an appt with my family doctor tomorrow and ask him for a CT scan of my abdomen, as my neurosurgeon suggests. It could also be gynecological since I've always had issues, especially on the lower left side, which is close to where the pain is now - and of course, I can't get into his office until late March. Hopefully, the family doctor can figure this out. My neurosurgeon does not think each of these things are related. If that is true, I guess I'm just lucky with timing.
Geez....I am really weary of the AN road to recovery. I think that all other issues should be on hold until I'm recovered from the AN surgery!!!!
More later as I find out what's next!
Kathy
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Hi Kathy,
You sure are lucky, with timing!! It does make sense, to find out what the pain in your abdomen is, before he operates. It could be something that might have to be done right away. Just guessing. We will pray that it isn't anything that requires a "knife"!
I agree, you have enough, just healing from your AN to think about other things.
I also had to have 2 surgeries for my AN. As you can see at the bottom, I was home 3 days, then had a spinal fluid leak from my nose, and they had to operate the next morning on BOTH my incision behind my ear, and my stomach! I really didn't want them to touch my previous incision, since it was so new.
So, I know how you feel. At least you know you would be home again the next day.
I'm so sorry to hear all that you are going thru.
I pray they find out soon what is going on......and then you will be DONE with hospitals and doctors! ;)
Lacey
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Kathy -
as my father always tells me, this is "just another bump in the road" ::)
But, like I always remind him, I've run into some fairly large bumps in my life. Are you sure we're not related? ;) :D
Please keep us updated on your "condition".
In the meantime, keep your chin up; it will all work out.
Jan
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Kathy,
Well, at least there's a plan. I hope all is resolved soon for you, you have been through enough.
Marci
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Hi Kathy,
I'm so sorry you have to go through all this especially facing another operation. I hope your docs get the answer as to what is causing your abdominal pain sooner than later. I also hope this is resolved soon for you -- you've been through quite enough.
Best wishes,
Wendy
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Sorry, Kathy. Can I say the old cliche, (sometimes) when it rains, it pours? Do hope they can get to the bottom of your abdomen pain soon so that you can move on with taking care of your infection problems.
Keep us updated,
Cindy
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Ugh! Sorry about this mess, Kathy! The timing stinks with the AN recovery! I'm with others hoping and praying they find the answers soon!
Regards,
Brian
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Kathy,
I would think under the circumstances they could push you to the head of the line for an appointment before the end of March! That's crazy. I hope your family doc can get the ball rolling a little quicker.
And no more medical adventures after this okay? ;)
Lori
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I love you all! And I love the term "adventures"! Sounds like a book or movie in the making. I'll do my best to make this next scene of the adventure movie the last one!
BTW, I saw my family doctor today and he thinks it is gynocological - no symptoms to worry about digestive or intestinal issues (or other organs down there!). So, the OB/GYN appt is Wed 3/11 at 10:00. I'm crossing my fingers that he knows what it is.
Take care!
Kathy
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Kathy~
I hope you get some answers tomorrow! I'll keep you in my prayers, OK?
K
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You do sound like you have had your hands full! Good luck tomorrow. I hope they can get you firmly on the road to recovery. My sympathies are with you. Two weeks after I got the PICC line out, I got hives from the Diamox. I no sooner got that cleared up when I got a UTI. Yep....the gift that keeps on giving! You just have to laugh to keep your sanity. :D
Priscilla
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Kathy,
I was afflicted with a UTI just after they pulled the catheter out of me before moving me out of the ICU. Catheters are one the easiest ways to contract a UTI. They are also one of the ways to invite a MRSA infection. Beware of this. Have you been tested for MRSA?
I know that I contracted MRSA while in the hospital and was quarantined in a private room because of it. I carried it around for over two years before finally being prescribed an antibiotic ointment, "Mupirocin", that took it out.
I was never affected by the MRSA because my immune system had always been in good shape.
I was also fortunate that I hadn't contacted Meningitis from the two shunt surgeries I had that exposed my cerebral spinal fluid. I remember one day a young resident doctor came in my room and said that he wanted to take a sample of my C.S.F.. He punctured the balloon-like pump that sits on the crown of my forehead under the skin
with a needle. I sat there dumbfounded as this deep brown liquid that resembled soy sauce streamed down my face in rivulets. It still doesn't make any sense to me.
"I wanna check your oil". And that's exactly what it looked like!
Paul
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Wow - I am always amazed at the unbelievable journeys you all have been on and here you are, helping and cheering me on!!
Today, (Thursday), will be my 4th day pain free (no abdominal pain at ALL) and no fever. This is so strange. About a year ago, I had a bout with irritable bowel syndrome that I didn't even think about (guess all in can think about is the infection these days), so after reading a LOT about IBS from reputable sources online, it sounds strangely familiar with what I experienced last weekend. Seems to me that if I had an acute abdominable condition and needed immediate attention, I would have on-going symptoms. At least that makes sense to me. So, the ultrasound at the OB/GYN tomorrow and we'll go from there!
I'm also formulating my list of questions for my neurosurgeon when I call him tomorrow with the latest update on the abdominal pain -Sure wish I'd thought to ask him these questions when I was in the office on Monday!!!
Thanks again, for all of your support!!!
Kathy
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Can we say "YEA" for no pain?? Good luck tomorrow!
K ;D
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Kathy ~
I've 'silently' followed this thread recounting your medical 'adventures' but had nothing substantive to add. Unfortunately, I still don't, but I just wanted to offer my wishes for an end to your medical issues and a return to normalcy. I think you've 'earned' it by now. Stay strong and know that many folks you've never met in person care about you and are hoping and praying that these problems you're dealing with will be resolved, soon.
Jim
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Kathy:
I'm with Jim. I have nothing to add, but want you to know that I'm cheering you on.
Syl
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Well, I think we've made progress toward getting the second surgery scheduled. My ultrasound with my OB/GYN showed small cysts on my ovary which "could" have caused the severe pain last weekend, but maybe not. He said I could also have had a cyst rupture last weekend and it's no longer there. Combined with my UTI and possible IBS (alphabet soup, huh?!), each could have contributed to a really lousy weekend! Anyway, he gave the green light for surgery (nothing acute happening right now in my system, as he sees it) and once I'm recovered from all this, I'll see him again to talk about how I'm doing.
THEN, later today, I had an appt with my family doctor, reviewed all this, and he agreed. He said that if it was something serious (like colitis, direticulitus, blah blah blah), I would have on-going symptoms and probably a fever, too. He also said that if I have any more symptoms like last weekend, he would order a CT scan right away, but in the meantime, let's get the surgery scheduled.
SO - I called the neurosurgeon and they said they would get moving on setting a date. Hopefully it will be within the next two weeks. A plastic surgeon will be involved in the surgery also (since there is work to do / clean up with my scalp) and I'll be meeting with him sometime between now and the surgery. What an ordeal.
I also seized the opportunity to ask the clinical nurse (Nurse Nancy...she is fabulous!) some questions about this current situation. I asked her what the difference was between this time (discovery of the infection the 2nd time) and the first discovery - the first time, it was an emergency situation and now it seems like we've got all the time in the world...whereas I'm scared that the more time that goes by allows the infection to spread throughout my body!! She calmly explained to me that the first time, they didn't know the source of the infection, what type it was, and I was really sick. They brought me in, did cultures, gave me powerful antiobiotics, monitored my white blood count throughout my stay in the hospital until they were convinced it was ok to send me home. Now, it's back, but they know what it is from the first cultures, I'm not sick, and my blood work shows that my white blood cell count is almost normal which means that it is not threatening to spread throughout my system. She said if I had a fever, was sick, or my bloodwork was questionable, then they would have admitted me right away. So, she advised me that in the meantime, if I start feelling bad or spike a fever, to call them immediately. That really put my mind at ease...I'm not the most patient patient, and my mind really works overtime to create worst case scenarios.
All this said, I am hoping that I have no more mysterious abdominal pains and I can sail through this next chapter.
Thanks for all the support... I don't know what I would do without all of you!!!
Kathy
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Well, that sounds better - I think. ???
At least it sounds like it is not a critical situation, and that your incision site can be fixed up. It does seem like expediting it would be nice, even if it is not threatening. You've been patient enough!
Take care, and I hope it is all over soon.
Steve
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Hi Kathy,
It sounds like the surgeon is getting to the bottom of things. Although it's a shame you have to go through another operation, even if you wil be able togo home the next day. At least your problems with this will hopefully be over. I hope you can have this taken care of very soon.
Wishing you a speedy recovery,
Wendy
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Hi Kathy,
All I can say is "oy" and at least you are getting on with things. Sounds like it's under control but I am sending good vibes your way.
Marci
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Thanks for the update. It certainly sounds like you have things well at hand between the various doctors, Nurse Nancy, etc.. I echo your belief that things will be smooth sailing from here through the next surgery and that recovery from your AN surgery will be able to continue on from there.
Keep us updated...
Regards,
Brian
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I have a surgery date!!!!!
This Friday, March 20 at 1:00, I will get this taken care of! I am so happy to have it scheduled so quickly. I have been in a real funk the last few days and really sad....guess the thought of not being done with this was getting the best of me. But now, I've got a date - hope is back, and I have to believe that this will be the last hurdle.
Thanks to all of you for everything you've done for me throughout all of this.
Kathy
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It's always easier when there is a "plan" of some sort, isn't it? We will hold you close in thoughts and prayers on the 20th.
Priscilla
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I have to believe that this will be the last hurdle.
Me too. Fingers crossed! ;)
Steve
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Kathy -
I'm so glad to hear that you got such a quick surgery date.
Good luck on Friday; I'll be thinking about you.
Jan
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Congrats on having a surgery date this Friday. I am confident this will be the last major hurdle to get over in order to resume your recovery from your AN surgery. Good luck! Keep us posted on how it goes.
Regards,
Brian
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Kathy,
I'm glad to see your surgery was scheduled so quickly. Hopefully things will improve from here on out and you will have a speedy reocvery.
You'll be in my thoughts and prayers.
Best wishes,
Wendy
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Wow,Kathy - that was quick! I'm glad. The sooner you get it done, the sooner it will be behind you and you can heal once and for all!
I'll be thinking of you on surgery day! Hopefully the last one you'll have to have!
Lori
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Just reading for the first time. Good luck on Friday. "A piece of cake" , compared to the brain surgery, though still surgery. :(
Thinking healing thoughts,
Maureen
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Kathy,
It is 3 minutes til 1:00. You are in my thoughts and prayers. Wishing you a successful surgery and a speedy recovery.
Jill
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Kathy ~
Because it's now almost 4 P.M. (EST), I'll assume your surgery has been successfully completed and you're home, recovering and looking forward to getting on with your life. Please confirm. :)
Jim
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One of Kathy's posts stated she would be in the hospital overnight so may not get news until tomorrow.
Cheryl R
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I'm thinking of you! I know you're going to be fine. God bless.
Jen
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HI Guys!
Well, who knew? I'm home sitting in my recliner, shocked that they sent me home so soon! Apparently, all went well. Although I had all indications of a bone infection, they opened me up to find no signs. They debrided the wound (really did a lot of clean up) , and gave us new instructions on caring for the wound. It is now a combination of staples and sutures (the sutures are where the open part of the infected part was), and much less hair this time than after surgery the first time. (how will I ever get back to work?)
Steve has to cleanse with soap and water 2x per day, then apply some ointment that starts with a "b". (I wonder why this was not our instructions after surgery, but then it doesn't do me much good to second guess.)
I am not in pain right now, due to great meds and the fact that my head is still surprisingly numb from the January surgery.
But- my problem now is this - I am having a hard time urinating. I can go, but only a small bit a time. They did not use a catheter, so I should be going a little bit more than I am. Have any of you had this problem ? Should I flush by drinking lots of water?
Any insight would be great!!!!
Kathy
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Kathy~
I don't have any answers for you on the tinkle-time problems but I don't think too much water can ever hurt!! Glad everything went well and you are home safe & sound!
K
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Try drinking Gatorade or Powerade. It is easier to drink than water, and goes right through you. ;)
I suspect it is a side effect of medication, either during surgery or after, and will go away soon. Great that you are home already!
Steve
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Kathy -
good news! I"m surprised they didn't have you use any ointment after your surgery either. I used bacitracin, but another "B" one is bactroban, which is much stronger and prescription and pretty much wipes out everything you could possibly have. Pretty much.
How long was the surgery? I'm sure they had you not eating or drinking after midnight last night and if they didn't have fluid running in thru IV for very long, you might be a little dehydrated - hence the lack of "tinkling". I'd just stay well hydrated and if it's not flowing better by tomorrow morning, I'd probably give the doc a call.
Welcome home!
Lori
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Hi Kathy -
What great news! I'm glad to hear you're home and hope this will be the end of your problem.
Best wishes,
Wendy
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Kathy ~
Congratulations on a successful procedure! I join many others in hoping (and praying) that the wound will now heal properly and your recovery can proceed at a normal pace.
The 'B' ointment is very likely Bacitracin. It is commonly used on incisions/cuts and usually quite effective. I used it, on my doctors instructions, to treat my AN surgical incision. It worked well. Unfortunately, I have no useful suggestions on how to conquer the urinary issue but drinking copious amounts of water should have a beneficial effect, assuming there is no underlying problem, which seems unlikely at this point.
Jim
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Hey Kathy~
How are things today? How are you feeling? Tinkle time better? Inquiring minds want to know...
K
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I am happy to report that tinkle time is better - thanks for askin' Kaybo! I think I'll check have things checked out while I'm home recouperating (finally) from this AN adventure to make sure things are working like they should. i've had a few other symptoms (some have been years in the making) that I should probably chat about with my family doctor. Since I've had plenty of time to reflect and read read read, I think that I need to be a better advocate for my own health and not ignore them. Quality of life, turns out, is a really important thing - I've never appreciated that more than during the last 4 months!!! This ordeal has taught me a good deal and I hope to be stronger because of it!!
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Jeez, Kathy, does this make you a "postie-postie?" What an ordeal! I'm glad you are home and "cleaned out." After my surgery my buddy Marge who was taking care of me, put my head over the sink and poured hydrogen peroxide over my incision every night and then slathered it with neo-sporine. Years of living in the tropics on boats really taught us about infections! I don't know why the docs don't tell their patients to do stuff like that. So sorry you had to go through all that but sounds like you can pass your title of "Queen of the Ickyheads" on to someone else now.
Hoping for smooth sailing for you from hereon out!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Boy, I sure could use Marge about now! I think I'm going to lose my mind!!!! My daughter has wound care duty today and guess what? There are two pea size dots of yellow-ish color on the part of the incision that was so bad before. How much can one person take? I guess I'll tell ya later. She used the soapy solution and cleaned it out, then applied the antibacterial ointment on the incision, as we've been instructed. I've got a call into my doc's office, but so far, they have obviously not found the magic solution to this ordeal, either.
If I had the energy, I'd go running down the street to let out this frustration, but I think I'll just imagine me doing it for now. WHAT THE HECK?????????????
Kathy
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Kathy,
Did they give you oral antibiotics too? They should have - you have to attack from all angles with a stubborn infection. I'd call and ask about it if they didn't prescribe any for you. Maybe they have some reason for not using them, but it seems odd to me. And if all they told you to use was the bacitracin, which is over the counter, ask about the prescription Bactroban too. Bacitracin is great, but it has it's limits. Bactroban will cover a wider range of "nasties".
Good luck!
Lori
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Kathy,
Sorry to hear about the drainage. Just now reading this post.
It's just draining a little. As long as it is not green and nasty smelling, you should be ok. Better to drain out than fester under the skin.
Lori is right- you need antibiotic.
I would also suggest feeling around the area. Does it hurt when you press on that area? If not that's a good sign. If it hurts, then there's stuff that wants to come out.Ymmm.
Hang in there...
And if you start running a temp >100.4, call AGAIN1
Nurse Maureen
(lori is a nurse too, can't you tell? ;))
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I am soooo lucky to be surrounded by such fabulous people!!! My husband took a look at the incision when he got home from work today and said it looked really good and that I'm panicking. My head is still pretty numb from the January surgery, but even at that, I can tell it's pretty ouchy at the part where it was infected and open - they worked on that part a lot during the second surgery.
I have a dr appt tomorrow afternoon to make sure there is no problem. We've been told three different things about how to care for this (the nurses in same-day surgery, the neurosurgeon resident, and another nurse). I want a plan....I want to know why I'm not using something more potent, given my history with infection....I want to know how often to apply the ointment (that varies from person to person)...I want to know whether to wrap it or not at night (and if I wrap it, is it a wet-to-dry dressing or not???). What should it look like as it heals? What are signs of trouble?
I am so gun-shy now! My daughter is coming with us to the dr. tomorrow, so she can hear all of this too.
Are there other questions I should ask??????? Maybe are there straight jackets for rental? Bubblegum machines that dispense tranquilzers? I feel like I'm becoming quite the nut-case here!!!!!
Kathy
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No you are not the nutcase. You've been through so much, you just want it to be over >:(
Ask if it is normal to have this drainage. They may do a culture of the drainage, (ask them- "Are you going to do a culture of the drainage?")
I would imagine just keeping it clean and dry and continue what you are doing is what they'll say, but we'll see.
Is the B ointment Bactroban or Bacitracin?
Ask for Bactroban if you can!
(I'm a poet and I don't know it)
Maureen
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Kathy,
I have decided you are done now. At this point what you have is a cut on your head. You have to take care of that, of course, but it is nothing like the brain surgery and staph infection and PICC line and other fun stuff you have been through. This is peanuts by comparison.
So stick a band-aid on it, and kiss it and make it better. :-*
I hope it completely heals up and you are feeling better soon.
Steve
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So it said, so it is written.....I welcome the pronouncement, Steve!!! A cut on the head- nothing more. Maybe I need a recorded message to place under my pillow to reinforce that thought while I sleep!!!
The antiobiotic ointment they want me to use is bacitracin - I have my list of questions prepared and one of them is to get a prescription for bactroban. Can't hurt to ask -they are used to me asking them millions of questions! We leave for Cincinnati in an hour and I am ready to hit the road!!! Kristin is going with us, since she has wound care duty when she is home during the day to give my husband a well-deserved break. So, hopefully, we will be better armed with the facts if we are faced with peculiarities during the healing process.
Thanks for the boosts!!
And for those of you who may be getting prepared for surgery or are just past it, I am in the 1% of patients who develop infection post-op. This is NOT the norm here!!! My mother always said I have to do things the hard way. How do moms know so much??!!!
Kathy
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You're just very special, Kathy! But, think of it as adding more great details to your story - though I know you'd rather do without some of these details...
Hope things resolve themselves quickly for you!
Cindy
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I'm with you, Kathy! I have always accused my son of doing things the hard way, but hey! I 'm the one who got post-operative meningitis two months after I had surgery. ;D
I have since returned to work and my leak seems to be well on the way to being healed--thanks be to God! You may make decisions about me, too, Steve. I
think it is time
Prisclla
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Guess what???? I had the best appt ever with the neurosurgeon!! He said the wound is healing beautifully and there is absolutely no infection anywhere! My daughter and I just might have panicked a tad bit at the first sign of drainage, but it is perfectly normal and we're doing all the right things in caring for it.
PHEW! What a relief! He didn't even make any comments about being gun-shy - He was patient, explained what he did during surgery, where the infection was, what we can expect the healing process to be, and I'm convinced. No promises about not panicking again, but my confidence is restored again, and I am so relieved.
I'm kinda sorry to be taking you all on this thrill ride with me (are you as tired as I am from the ups and downs???). I will do my best to stay as calm as i can and take some deep breaths!!!! (But I'm sure glad you've all been there for the ride!!!)
Kathy
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Kathy -
I'm glad all is well! I'm also glad you were ready to give him heck if it wasn't! ;)
Better safe than sorry - I'm glad you got it checked out and know that you're healing is headed in the right direction!
Phew....
Lori
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You may make decisions about me, too, Steve. I think it is time
Hmm...done, not done...done, not done...Done! ;D
Steve
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Kathy,
I'm glad to hear the infection is gone and things are looking up. Your neurosurgeon sounds grea,t as he should be. Most docs realize how stressful these things are to us and will try to make us feel as informed and comfortable as we need to be. A positive attitude is an important ingredient in healing. I didn't have a post-op infection but my incision leaked serous and liquified fat for two months. Once I was assured it wasn't an infection, I felt better but it was bothersome and kept me on my toes. Like you, I was unique, I don't remember the statistics, but this doesn't very often. I hope the rest of your recovery is uneventful.
Wendy
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great news, Kathy
Don't worry about over reacting. It is what we women do!
We are totally in tune to our bodies.
Enjoy your day :)
Maureen
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Kathy,
I've been following your trials and tribulations with the infections and 2nd surgery. Finally glad to hear all is heading in the right direction for you. That was a good idea to disclose to all who are reading(especially newbies) about your issues being in the small minority regarding AN recovery.
You've certainly been through more than your fair share of issues, but you obviously have had the inner strength and good attitude to emerge in good shape. Hope all is on the boring side(medically speaking) going forward for you.
Patrick
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Thanks, Patrick! I would love to take credit for my sensitivity, but I can't. A very wise forumite pm'd me some words of advice and mentioned her own personal experience that she has not posted for fear that many would become overly concerned for their own health, even though the chances were extremely remote that it would not happen to them.
She knows who she is and I just love her for her counsel and example. That's why I mentioned the fact that I'm the lucky 1% of patients. I think it has been easy for me to get wrapped up and consumed with my own issues, that it was easy to forget about those are reading and learning and worrying about their own situations.
I have learned so much from the people here and I am a better person than before my AN diagnosis. I'd rather have learned things a different way, but I'll take this lesson appreciatively!!!!
Kathy
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Kathy -
nothing like a great doc to give you a good dose of confidence. I know that from experience ;)
Glad things are working out for you - you've certainly been through a lot since your surgery :P
I'm with Steve - you're done. Do you hear me??? Done!!! :D :D :D LOL
Jan