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Thread: The tests begin
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12-19-2006, 11:40 AM #1ICN Member
- Join Date
- Oct 2005
- Location
- Central, NY
- Posts
- 2,809
The tests begin
I finally heard back from the Radiology Department. I will start the testing process tomorrow and one at the end of December. So two of them will be out of the way before the New Year. I am not sure what they are doing tomorrow. I will be having two placebo injections so they can pinpoint the exact route of the pain relief when it comes time to talk about denervation or pudendal nerve release. They want the right nerve. As much as I don't want to wait all year for them to find it, I want them to get the right nerve as well. In the meantime I will be tested again for Vulvar Vestibulitis and Vuvlidynia (forgive the spelling). I also have severe adhesion disease that can not be fixed because more adhesions will form. He is not going to do any abdominal surgery. He feels I've been through enough. Adhesions and Endometriosis can grow with no uterus there so there is no point in removing that at all and I don't want that removed. I don't want anything else removed.
Thank you all for your continued love and support during this awful time. At least they are getting started though and that is a blessing and the Christmas Gift I wanted. I wanted a date and time and I got that. I am grateful for this!
I hope they actually do a nerve block instead of just a test so I may have some relief for Christmas. He mentioned that some of these nerve blocks for my conditions could last longer than 10 hours (maybe even a few months) if they are done by a real good doctor. I pray that this Radiologist is better than the team I just got done with. The last set of people would not even do a regular nerve block, they just went for an ablation and it failed and then they told me they could not help anymore. I knew there was more to it than that.
Happy Holidays to you ALL!
KaraComplex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
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12-19-2006, 12:04 PM #2Angel watching over us
- Join Date
- Mar 2004
- Location
- Viera, Florida
- Posts
- 4,325
Kara,
I hope that this team will give you relief to enjoy the holidays and that they are able to work the magic the others were not. If he is an interventional radiologist, doing this sort of thing is their specialty. Let me know if I can answer any questions or help in anyway. I am worried about you!
Hugs and love,
Barb
(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
PCOS 7/85
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
IC 6/03 :evilsmile
Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
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12-19-2006, 12:07 PM #3ICN Member
- Join Date
- Oct 2005
- Location
- Central, NY
- Posts
- 2,809
Thanks my Love
Barb,
Thank you, Yes he is an interventional radiologist. I had to drive all the way to home for it. I will let you know if I have questions. How are you?
Love,
KaraLast edited by Kara29; 12-19-2006 at 05:36 PM.
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12-19-2006, 12:13 PM #4Angel watching over us
- Join Date
- Mar 2004
- Location
- Viera, Florida
- Posts
- 4,325
I am hanging in there. Lots of drama on the custody front. Trying to stay healthy physically so I can fight him with everything I have. I did get a new job that I start after the first of the year. I am doing precertification for insurances for radiology procedures. Kinda ironic, huh?
Hugs,
Barb
(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
PCOS 7/85
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
IC 6/03 :evilsmile
Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
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12-19-2006, 12:45 PM #5Support Volunteer
- Join Date
- Nov 2006
- Location
- Louisiana
- Posts
- 8,892
Kara,
I sure hope you get some pain relief, I know it has been very hard on you..
I will pray for you that they find the right nerve and give you some well deserved relief...God Bless You!
and I hope you have a Merry Christmas...Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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12-19-2006, 01:31 PM #6ICN Member
- Join Date
- Jan 2005
- Location
- Colorado
- Posts
- 616
Kara, Good Luck to you. I hope you will finally have some pain relief with this procedure.
Bianchi
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12-19-2006, 03:31 PM #7ICN Staff
- Join Date
- Jan 2002
- Location
- Memphis, TN
- Posts
- 10,854
Kara...XX = All my fingers +
xx = All my toes----crossed for a good outcome for you.
Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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12-19-2006, 04:22 PM #8ICN Member
- Join Date
- Dec 2004
- Location
- Toronto Canada
- Posts
- 993
Kara all human & kitty paws crosseed for you here! Sending you love & kisses!
Sandra& Family
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12-19-2006, 05:03 PM #9ICN Member
- Join Date
- Sep 2006
- Location
- USA
- Posts
- 1,897
I am praying for you Kara......hang in there :o)
Merry Christmas~
octoberfarm
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12-19-2006, 06:50 PM #10ICN Member
- Join Date
- Sep 2004
- Location
- Sweet Home. Or
- Posts
- 1,034
I am glad that you are getting the Christmas gift that you wanted. This radiologist sounds like he knows what he is doing. God Bless him!
Happy Holidays, Kara.
MelMeds I take:
Elmiron, Elavil, Vagifem- for IC
Albuterol, Flovent, Atrovent- for Asthma and lung problems
Paxil, Clonazepam- for depression and Anxiety
Atenolol- for rapid heart rate
Nexium- for Gerd
Levothyroxin- for Hypothyroidism
Lasix, Pottasium- for edema
Lipitor- for High Cholesterol
I coated aspirin
02 at bedtime
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12-20-2006, 05:40 AM #11ICN Member
- Join Date
- Jan 2003
- Location
- Hutto, Texas (30 miles or so outside of Austin)
- Posts
- 4,149
Kara:
Hope this gives you some relief. I along with my "babies" 2 dogs have all of our fingers and paws crossed for you.
May you and your family have a Merry Christmas.
Mary
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12-20-2006, 11:22 AM #12ICN Member
- Join Date
- Jun 2004
- Posts
- 4,305
Keeping you in my prayers and hoping the radiologist can give you relief....I am glad to know there is reason to hope!
Blessings,
Lori
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12-20-2006, 01:41 PM #13Angel watching over us
- Join Date
- Mar 2004
- Location
- Viera, Florida
- Posts
- 4,325
Kara,
I so hope today went well and that you have a full tummy because you had an appetite today and that you are able to sleep through the night tonight.
Hugs and love,
Barb
(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
PCOS 7/85
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
IC 6/03 :evilsmile
Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
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12-20-2006, 03:08 PM #14ICN Member
- Join Date
- Mar 2003
- Location
- Atlanta
- Posts
- 1,424
Good luck!
Namaste
"You must be the change you want to see in the world." - Mahatma Gandhi
"The most important medicine is tender love and care" - Mother Teresa
Proud mother of Ahleia, born on April 9, 2007
-----------------------
Diagnosed with:
IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!
Meds:
Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35
Health treatments/practices:
Kripalu yoga, Chiropractic, Massage therapy and Reiki
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12-20-2006, 03:21 PM #15ICN Member
- Join Date
- Nov 2006
- Location
- Great Falls, MT
- Posts
- 124
Kara
What can I say that hasn't already been said? We are wishing you relief soon and very happy holidays! I don't know anyone who deserves it more.
When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.
Diagnosed in 2001
Meds
Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed
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