Some more good information

[Kara29]

We are trying to narrow down the troubled nerves. I have had two Hypogastric Nerve Blocks so far that have been sucessful in diminishing the pain in the urethral area. This points to Denervation. I was supposed to go in for another Hypogastric Nerve Block Today but I wanted them to try the Pudendal Nerve Block instead.

At first when I went in Dr. H had me scheduled to have another Hypogastric Plexus Block just like before but going in through the back in stead of the abdomen. I asked Dr. W if we could try the Pudendal Nerve Block. He asked me a bunch of questions regarding my symptoms and I explained the whole deal again. He said he didn't remember me saying I had trouble upon sitting when I saw him last but that he was more than happy to switch plans and do a Pudendal Nerve Block instead. He mentioned that there were a few spots that could be entrapped so they would try this half which he referred to as the "upper half" first. The plan is to test the "lower half" next week if his secretary can fit me into his schedule. He wants me to call him tomorrow to tell him how it went and then he will let me know what day to come back next week. The areas that were numbed 100% were the the pubic bone where the hair starts all the way down (Mons Pubis) Clitoris, Urethral Opening, Vagina, Labia Majora and Minora, Vulvar Vestibule, and Anus. It's already been about 5.5 hours. In these areas the pain went from a 10 down to a 0.

However, while sitting, I can still feel on the inside of where the urethra used to be. The opening is numb but the interior up inside, I am still well aware of. Although the pain there has been reduced to about a 6 from a 10.

I realize that there could still be an nerve in there that we missed. I am hoping that the 2nd Pudendal (lower) Nerve Block will help that darn urethral area. But I realize that it could be just a nerve that was once reduced to a 0 with that Hypogastric Block I had several weeks ago. I am sure Dr. H will want to repeat it again at some point which is fine.

Possible Problems still could be Denervation of one or more of the offending nerves near that urethral area, Pudendal Nerve Entrapment, Pudendal Nueralgia in more than one place, Vulvar Vestibulitis, Vulvidynia and adhesions as well as severe Endometriosis.

The good thing that came out of today's block is that it will give Dr. H more information of what it could be. We are in the information gathering stage, the data collection, which takes the longest to go through. The other good thing is that I have had some hours of relief even though they will go away at least we found out the spots it helped.

I am not looking for 100% relief or the exact cause of the problem. I just want something. At this point I will take what I can get and run with it.

Positive for Today: A successful test run of the upper portion of the Pudendal Nerve. A Compassionate Doctor who listened to me and went with it. Another Day Closer to some answers.

[Bessie]

How wonderful Kara :o)
I know the pain relief has to be awesome. It sounds like the doctors are on the right track. I am praying that when you go back next week you can get even more relief. Hang in there.....we are all pulling for you!!!
octoberfarm

[ICNDonna]

It sounds like you are making progress. I'm so very glad.

Huuuugs,
Donna

[ihurttoo]

So glad things were sucessful today. I just know they are going to find something to help you! Get some rest tonite, I know how tiring these things can be and your body needs all the rest you can get.

Love,
Amy

[Judith56]

I think it is really good that they are going slow and taking things one step at time. This means they are really committed to seeing you through this to get you relief.I think sometimes patients and doctors will try for a quick fix and when it does not work everyone gets discouraged and at times angry and give up. It is hard to go slow like this, but I truly think in the end it is the way to go. Keep reminding your self that you are seeing some positive results if you start to feel bummed out that it is not happening as fast as you would like. I am happy that things are good this far!

[Mel53H]

Wow!!!:woohoo: :dance: :dance: Good news!!:smile tee

[sandramac]

:smile tee Great news! Im so glad you are getting some relief:woohoo: :woohoo: & a doc that is listening! Hugs Sandra:cat: :cat: :cat:

[blondie45]

Glad you are now going in the right direction to help your pain!!!

[leelee88]

Thats wonderful Kara!!!

I know even a small break from pain is such a blessing to you right now...
((((((((((((((((((hugs))))))))))))))))
I hope to here much more good news:smile tee

[icsonja]

Kara, Hi there, sorry it has been so long in me getting back to you, but I have been dealing with alot of health issues myself and just haven't had it in me to keep up, I'm so sorry.
But I am glad to hear ypu are getting some pain rekief, that makes a worls of difference in just about everythinh. You have been thru it and I admire your internal fortitude. I think of you often and wish you the best, I have just not been ready to talk with anyone ,just so much a body and brain can deal with at one time, you know what I mean? So I took a break from all medical websites and just dealt with my own issues for awhile. I know I should of kept in touch, but I hope my friends here at ICN will understand my medical,being sick all the time breakdown....I just couldnt talk about anything that has happened tp me to anyone.
But enough of me, you seem to be getting good relief from the nerve blocks,I had the hypergastiric one done about 3 years ago and while it didnt work for me, it did help anotherwoman I met in San Antonio with her severe and seemingly untreatable pain, so I will keep all fingers, toes and even my eyes crossed for you.
If you are not too mad at my bad behavior, call or just let me know whats up. I have tried just about everything on the list here for treatments (except DMSO, which I refuse to even try) and I am sure tired of it all,plus now with seizures and spinal problems and continuing damage from interstim, I am just sick and tired of being sick and tired and so is my husband.
Again, sorry for letting all this out on you, you surley dont need it, so I'll just say Best Wishes and I will pray for you to at a 0 pain level very soon!!!
Sonja

[Kara29]

Dear Sonja,

There is no need to aplogogize at all! I had to leave for awhile and have taken a distance myself because I can barely handle myself at the moment! I underestand 100% the need to step back and take care of number one (YOUR NEEDS)! Just to clarify, the nerve blocks are purely diagnostic in nature and do not provide long term relief. I am going to eventually have to have some surgeries. I could never be mad at you! You are a sweetheart! I know about not wanting to talk to anyone, including my own self. Sometimes all I can do is just cry to communicate. Sometimes all I can do is shake my head yes or no. I even stopped writing in my journal because I feel like every time I open my mouth that something is working, it backfires on me. I also feel like I am all alone here with these complex issues haunting me. There are times where the PTSD takes over my whole being and I literally lose my voice and will to keep fighting, so I hear where you are coming from! Please PM me your phone number so I can call you if you feel like talking. We are very much in the same place mentally and I would love to speak to someone who truely knows what it's like to live a COMPLEX CASE lifestyle.

Always your Friend! Again, I understand! :smile tee

Kara

[Kara29]

I go in next Thursday for my next nerve block. This is the 2nd half of the Pudendal Nerve that they need to test. They are moving much faster than I thought they would! This will be my third of 5 or 6 nerve blocks.

I also talked to the Doctor/Surgeon in NH. We talked for an hour and a half. He was the sweetest man and he really wants to help me through this and understands the devastation that I am going through and the pain! After all of my tests are done here in NY, he will do a few more exams and tests and then take over the surgery end of things and do them all at once so I don't have to go in for several surgeries. We will be staying at our house on the Cape when that happens so the traveling is less on me. He reminds me of my Doctor/Surgeon in NYC. This man travels with his patients to find answers if he can't fix them himself. WOW! He is an avid researcher and doesn't stop when nothing can be done. He finds help for his patients and does not shove them off. He will specialize and learn whatever he has to to help his patients.

I would like to be able to walk down the Isle to my one and only Baby Sister's Wedding on June 1st. I am reaching hard for this goal!

Positives for today: Another block scheduled for next week. Another compassionate Doctor that wants to help, spoke to me and helped ease my fears about what may have to be done in the future to help save me.

Thanks to all of you who actually take the time to read my stuff and respond to me. It's nice to know that I am not alone in this fight. Like Sonja, I have taken some time for myself as selfish as this may be. I will be able to be more helpful to all of you when I am not in so much pain.

[Mel53H]

You've been through so much and now everything seems to be finally falling into place.:smile tee

Mel

[mary124]

Kara:

So glad things are finally going in the right direction for you. Keep us inform of your progress. :woohoo: :bow:

[aprilmae]

Kara,

Just starting to catch up after the holidays and I am so glad to hear that progress is being made for you. I am just so happy for you!!!! You are a remarkable woman and an inspiration to us all.

Lots of hugs,

April

[Bianchi]

Kara, I am so happy for you. Sounds like you found the right Dr.'s.
Bianchi

[sandramac]

:smile tee Kara Im so glad to see you have some positives & no negatives! You really are such a amazing & understanding person to all your Ic sisters ! Love yeh!
Ps Darin had his porsedure yesterday, to blast his kidney stone. i was so excited to not be the patient:woohoo: for a change!
Poor guy! hes fine, compliaing how it hurts to pee & frequency :woohoo: ! Sound fimillar:bonk: :loco:
oh well hugs ! Sandra:cat: :cat: :cat:

[icsonja]

Kara I PMd you with my number, I think I lost yours too, my brain is about half here these days. I am so sorry you are dealing with PTSD, boy I have been having it bad right now,It was Dec when my botched surgery was and when I "died" 3x and had 8 surgeries to put me sorta back together,I never knew so much could go wrong in a hysterectomy, but wow,life altering for sure.So I HATE December, too many bad anniversaries, know what I mean?
I had to go back to the small town where my hyster. from hell occured last week, it was the first time in 8 years that I had been there, and I drove, my 14 yo daughter was w/ me, thank God. I got about 20 miles from the town and I just began crying, no warning, then my heart starting pounding, couldnt braeth, shaking, my 14 yo daughter kept me sane, she held my hand and talked me thru , it was the worst panic attack ever and I felt awful about my little girl seeeing me just fall apart, but I had NO control at all...nothing helped....anyone have any suggestions on coping w/ PTSD..>>I have a feeling I may need to see a shrink again, it sure isnt getting better.

Kara,hope you feel not to awful tonight, I no not to expect you to feel good....compadres of the hard fight and difficult treatment course, at least today we both felt ok to type....it beats crying about my old self. I miss talking w/ you, you really GET it all.
Warm fuzzies on the way......
Sonja

[Kara29]

Sonja,

You can go to Amazon or Barns and Noble or any major book seller and get a PSTD book called The PTSD Workook By Mary Beth Williams and Soili Poijula. Its supposed to have simple, effective techniques for overcoming tramatic stress symptoms. When we talk I will read you the contents of what is in this book to see if it may be something you would like to work with. I have not started with it yet as I am not ready.

I hope to talk to you soon Sonja.

HUGS!

Kara

[icsonja]

Thanks Kara,looking forward to talking with you in '07....gee we made it another year....gofigure!!!
Sonja

[Ginny]

Kara,
I just want to say I hope that the new year brings better health and less pain.

Ginny

[Emma's Mommy]

Hi Kara.....hope all is well!