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  • Emma's Mommy
    replied
    Billsbaby would you mind PMing me the name of your specialist in syracuse???

    Kara you're in good hands at Crouse. That is where i had all the reflux testing done on Emma when she was only a few weeks old and they were wonderful with her and me both (i am a very overprotective mama)....i also had all my ultrasounds MRI x-rays and the zillion tests they had me go through BEFORE comming to the conclusion i needed to be tested for IC done there and they were wonderful with me as well.....and i was NOT a very happy camper i was in soooo much pain!

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  • Kara29
    replied
    Erika,

    I'm so sorry to hear about the "accidents" you and Jeremy are dealing with. Hoepfully insurance will kick in and you can both have transportation again soon. Maybe you could ask them for a loaner until you have another car. I am so glad none of you were seriously hurt. I am hoping that you have a safe delivery of your new baby girl.

    My Mom just started her 2nd round of Cjemo today. I had to leave and come back to Syracuse so I don't know how she fared.

    I am freaked beyond belief about the Weddings. Roomate's is the 21st in Long Island and Sister's is the 1st of June. My hands are shaking just thinking about it all........

    Thinking of You, Jeremy, Emma, and the little one

    Kara

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  • Kara29
    replied
    Gopher,

    Good Luck on May 24th! I will be at Crouse on the 21st for an under anesthesia MRI. They sent a very nice Crouse Patient Handbook. It made me feel very comfortable. I hopeyour cysto/hydro yeilds some good information in order for Dr. K to better help you with your IC and eventually relieve your symptoms.

    Waving to you from CNY!!!

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  • Billsbaby
    replied
    hey gopher i pmed you.i was obviously lucky to find an ic specialist i guess.she knows her stuff i can tell you that,and she is THE MOST compassionate woman i have met.she has been there on the phone with me many times while i cried,she calmed me down,listened to me,and always had the right answer.i now live in ky and she still calls me every week for moral support until i am comfortable with my new specialist.she has called and talked to my new uro here 2 times,and after she talked to her,she called me to let me know she felt very good about my new uro!! she is my .i could go on forever.let me know if you need more info.

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  • gopher7895
    replied
    Advil is a problem for me too. I just figured that out and wouldn't have made the connection if people here hadn't mentioned it. I'm finally figuring out the things that cause pain for me. I guess I'm just a little slow. I went to Crouse yesterday for my pre-testing for my cysto/hydro yesterday. A couple nurses mentioned to me that I'm in good hands with Dr. Kronhaus. They said he treats a lot of IC patients and they had nothing but good comments about him. I go in at 6:30 a.m. (wow that's early!) on 5/24.

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  • Emma's Mommy
    replied
    Hi Kara.....how are you and your mom doing?? Your sister's wedding is comming up quick...i bet she is excited.

    Jeremy and i have been better actually.....he got into a car accident in front of work a few weeks back and totaled his car (not his falt) and just last night (monday) i got t-boned by some mornon and ended up spending 7hrs at labor and delivery having the baby monitored (she's fine).....and did i mention Jermey is on travel for work? and the only car we have that is drivable is my inlaws car and it's standard and my belly is too big to reach the clutch? oh yeah and i was showing clients houses when this all happened (co-worker of Jeremy's....nice couple....too bad i gave them a heart attack!)? and my back is killing me and i can't take anything for it....which sucks!

    but i have actually been enjoying the weather...spent lots of time outside on my back deck in the sun because Emma was at daycare and i couldnt go anywhere.....it was very relaxing actually....i'm kind of looking forward to doing it again tomorrow....and then my mom will be taking me to the chiropractor and hopefully she will be able to put my back back together (<----funny sentance!)

    Rachel, advil does the same thing to me....it's awful.....and it took me months to figure out what is was....especally b.c my old uro TOLD ME TO TAKE IT FOR IC PAIN?!?!?!?!
    Last edited by ICNDonna; 05-15-2007, 04:58 AM. Reason: Negative comment about a specific physician.

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  • Kara29
    replied
    I have to travel to Rochester, NY for any bladder issues.

    Hi Erika!! I hope you and your family are enjoying the nice weather here.

    Sue,

    It's great to hear that the Interstim is helping so well!

    Rachel (I sent you a pm)

    Hugs to you ALL! We should have a little luncheon togther this summer.

    Kara

    Leave a comment:


  • suebee2
    replied
    CNY friend

    Gopher7895, I live in the Central NY area, north of Syracuse. I do not have pelvic pain or IC, but I have had heavy leaking problems for 15 years or more. My Dr. sent me to Dr. Joel Bass, URO, Associated Urologist of CNY. I had an interstim implant on 4/25/07, and it's doing super; a new life of dryness. Dr. Bass refered me to a lady who has the interstim, to help with her IC, and surprise when talking to her, she is a business friend. She is doing quite good, over the past 5 years. I could make a connection for you if you would like. Want to send a private message? Although we don't share the exact same problems, I would be happy to be a friend. sue:hi
    Attached Files
    Last edited by suebee2; 05-08-2007, 10:08 AM. Reason: picture

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  • RAS6
    replied
    Originally posted by gopher7895 View Post
    When saw my urologist Thursday, they put a catheter in to see how much urine was left in my bladder after I emptied it and wanted a sterile urine sample for testing since my first showed blood. That sounded reasonable so I agreed to it. The catheter hurt a lot going in and coming out and later I had a bit of pain but it was better by the time I went to bed. By Friday afternoon though I felt stinging pain (like the catheter going in) and all weekend it hurt a lot.

    I called the uro this morning and a nurse said some people can have a lot of pain after a catheter so to take Advil and warm baths. She said the pain should keep getting better but may take up to 2 weeks to go away. Anyone else ever had this experience? Seems a bit strange to have this much pain from a simple procedure. I never had a catheter in my bladder before so don't know what to think.

    They suspect I have pelvic floor dysfunction and I'm seeing someone next Monday about that. Sure seems like that's a problem for me too.
    Did anyone check to see if you have an infection? Just curious. Unfortunely while Advil really helped my pain (mainly from PFD), it made my frequency go through the roof (every 10 -20 minutes) So I personally have to avoid it. I also have had issues with catheters. I don't get them any more, but if I do I always request a child sized catheter, or the smallest one they have. The Doctor I see has them and back when I was getting installs they had them as well. Every person's body is different and some of us need smaller catheters. Also, any time I have ever had a catheter the doctor or nurse used lidocain gel first, and I have been to three different practices now! I hope they did for you. I can't imagine how much that would hurts without the Lidocain!
    I hope you are feeling better now!

    Leave a comment:


  • Emma's Mommy
    replied
    Originally posted by Kara29 View Post
    Advil can be somewhat irritating to some people with IC. Just curious, where is your Doctor located? Is he an IC Specialist?

    I hope you are feeling better real soon!

    Kara
    Kara you're sooo funny.....an IC specalist in Syracuse....

    i agree with Kara do NOT take advil, i know personally it irritates my bladder. maybe try some urostat....if you can get your uro to give you an rx for it (perydum) its alot cheaper! it will numb your urethra and help with that burning feeling.

    So what did your uro suggest for treatment? i personally have found (and Kara will back me up) that uro's in this area dont know much about IC around here, and i personally try to not see my uro unless i absolutly have to.

    I also sent you a PM
    Last edited by ICNDonna; 05-15-2007, 04:55 AM. Reason: Direct medical advice.

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  • Kara29
    replied
    Advil can be somewhat irritating to some people with IC. Just curious, where is your Doctor located? Is he an IC Specialist?

    I hope you are feeling better real soon!

    Kara

    Leave a comment:


  • gopher7895
    replied
    Catheter question...

    When saw my urologist Thursday, they put a catheter in to see how much urine was left in my bladder after I emptied it and wanted a sterile urine sample for testing since my first showed blood. That sounded reasonable so I agreed to it. The catheter hurt a lot going in and coming out and later I had a bit of pain but it was better by the time I went to bed. By Friday afternoon though I felt stinging pain (like the catheter going in) and all weekend it hurt a lot.

    I called the uro this morning and a nurse said some people can have a lot of pain after a catheter so to take Advil and warm baths. She said the pain should keep getting better but may take up to 2 weeks to go away. Anyone else ever had this experience? Seems a bit strange to have this much pain from a simple procedure. I never had a catheter in my bladder before so don't know what to think.

    They suspect I have pelvic floor dysfunction and I'm seeing someone next Monday about that. Sure seems like that's a problem for me too.

    Leave a comment:


  • RAS6
    replied
    No problem Sue! I hope you stay here and keep posting! This board has really been a huge help for me, from giving me support when I am scared and in pain, to helping find practical solutions to driving, taking trips, pain management, etc. The cook book section has helped make sticking to the diet alot more enjoyable. Plus I was able to find a great IC specialist through this board as well. Most importantly, I was able to find out about more treatments when my first Doctor's were telling me I was out of options and I feel that is going to giveme my life back! Good luck to you! I hope find what works for you very soon!

    Leave a comment:


  • gopher7895
    replied
    Thanks!

    Thanks so much to those who responded to me. Knowing others have battled similar problems and have been successful gives me hope for my future...Sue

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  • Kara29
    replied
    I live in both places. Feel free to private message me.

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