Just read this thread

[MakinIT]

I started reading this thread.....I've tried to use the nueral implants (with nothing but spasms to show for it) I just wanted to know a little more about this procedure... do they go in and zap them with electricity to kill them or with radio frequency (what I've presumed from reading) does it hurt? how permanant is it?It looks like the godsend i've been searching for. Guess I''ll Have to find out.



Tracey

[DaniBelle]

Pain meds are not helping...pain is constant and grinding like a mouthful of rotten teeth. I can't stand it anymore. I doubled my pain meds to see if I could get some relief, no relief, just a headache and craving for sweets. I'm so sick of this. I want those nerves cut in my abdomen A.S.A.P.. I've got a sick feeling that no amount of pain medication is going to tame this beast in my abdomen. I've been reading about Hyperalgesia (sp?) and know I have this problem. No other explanation. After 35 years of pain down there, my nerves are in hyperdrive and won't cut off!! If I could reach in there and cut them myself I would do it (not really..wouldn't know which ones to cut! Don't worry). I'm remembering the show on 20/20 about the ballet dancer who just pulled a tendon in her thigh. She ended up in a fetal position on her bed because her body hurt so bad. Her nervous system was out of whack and just that one simple injury caused her whole body to be in horrible pain. She couldn't walk and had to use a wheelchair. Doctors FINALLY figured out what the problem was and put her on a range of neural medications. She can walk now, but still has pain. Such a sad and bizarre story. Doctors and friends shunned her for years. Her husband stood by her and took care of her. I do think my nervous system can't fight the pain signals anymore. I can't handle it anymore. Does anyone have any suggestions as to how I get this a procedure done (nerve ablation) to sever these nerves and the big question...does it work? Please respond soon with any input you can offer.

Thanks,

Dani

[marsi4]

I truly empathize and understand what you are feeling. I've had 35 years of horrid pain too. The last three have been torturous. I have had enough of this disabling chronic pain and I'm also considering nerve blocks, nerve ablations, and if that fails I will be considering a cystectomy for better or for worse. I am going to fight this till the very end and pray that I can get some relief. I am waiting to go back to a pain clinic to have this procedures done. I know that there are potential risks and consequences that even anaesthesiologists overlook, but I just can't live like this anymore. I totally can relate with taking more pain medication in the hopes that it will relieve your pain, but you wind up feeling sick and lithargic, and unable to think straight. I feel your desperation and frustration and I will let you know how it goes. Please feel free to write me and I'll keep you posted and help anyway I can. I pray that you can find solace through all of your pain and put an end to your suffering. I feel like I have been cursed many times and feel like I am the only one who has had this condition for so long and have yet to come across a doctor who has seen another patient with this condition, but I have come to know that I am not alone on this board. It is a rare condition that doctors don't understand and very difficult to treat. I believe that what i have going on is not only ic or bladder related. I think that I have a neurological disorder in the pelvic area as well, and because doctors are not very familiar with this condition and knowledgeable , I feel like I have to rely on my intuition, faith, and take certain risks in order to try and improve my quality of life. I sometimes feel like I am sacrificing myself for experimentation purposes and I can potentially wind up worse off than I am now, but I cannot sit back and let this pain defeat me and if it does I want to know that I did all I could and fought till the very end with every ounce of strength, and courage. God I know what you have been through, and I now know that there is someone else that understands the pain and suffering that I have endured. I may never be able to resolve my pain and suffering but knowing there is someone else who is afflicted by the same condition makes me feel like I am not isolated or cursed. Please let me know what you do and what the outcome is, and I'm here for you whenever you need to talk. LOL,

Marsi4

[MakinIT]

So I assume the hyperalgesia is the overproduction of pain nerves? I know that has to be me because of how the pain doc described my nerves on Flouroscopy. My belly is mucho paino this week because of all the activity. My pain counselor told me about a womens group of Physical Therapists...they focus only on women's issue's and he (my counselor) thinks I need another opinion in terms of how to treat adhesions and the pain....and it has spread from left to right. ugh. I don't think anything will hlep the pain in my bladder (whichhasn't been a walk in the park lately...I did ask him about cutting the nerve and he said that he doesn't see that helping much...sigh)...

[mela414]

Do you think you are suffering from more adhesions? It sounds like you had a lot of adhesions in there and those alone cause a lot of pelvic pain. Also the procedure you had done probably caused more to form unless the dr used some type of adhesion barrier. I'm not sure if adhesion barrier gel is approved in Canada. We have adhesion patches that are FDA approved here in the US but are really worthless for people like us that suffer adhesions. We really need to have the gel sprayed all over and even then you may have to go back in and have some minor adhesions cut-down. I am dealing with an adhesion on my lower right side that is causing me pain. I feel it pulling and tugging all the time and it often gets worse with bowel movements. I know I will have to get it done soom when the timing is right with other things going on in my life. I had adhesion surgery done about 3 years ago by someone who only treats adhesions and am so much better now.
I hope you get some answers for you pain.

[Georgia L]

We have so many common pains and medical conditions. I can understand what you are going thru.
I took the book (not exactly sure of the title) something like: You do not have to live with IC to my uro p.a. she is looking into the nerve ablation surgery that the doctor in the book does in California. My parents said that if the interstim does not help and they can find a way they will get me a ticket to CA to see this doc... what share airfare cost?
Lets keep praying!
Hugs, Georgia

[MakinIT]

Mela: I live in Vancouver, USA (Washington) and my ob/gyn always puts a barrier on to try to discourage the growth but GRRRR it don't work for me.... (the Vancouver thing is funny...we have a joke about it here, especially b/c Vancouver BC is less than a day away...like 7 hours) My pain counselor, I talked to him last week about the Nerve Ablation and he said I he didn't want to see me have to go through that much stress. However, I had a huge emotional crisis this weekend so maybe his mind will change.

[Myca]

I just started on Neurontin and I feel so weird! I hate this feeling and right now I am still on the lowest dose. I know these nerve blocker pills are supposed to help but do they really? And at the cost of what, my sanity? My bladder won't hurt but I'm be a zombie everyday who can't drive? This can't be the answer.

[MakinIT]

I'm surprised he is starting you with nuerontin. I take topamax, along with all my other pharmacuticals. It ain't much fun but I can tell when I am not using it. Migraines return, the nerve pain is nasty...I also take valium, morphine and Oxy (oxy for break through) but the topamax can make me azombie. You ought to ask him for a lo dose of topamax. It is less toxic, and stressful, and you lose wieht (If you want to lose wieight)...

Anyway gotta go...kiddo end of year softball game against teachers....I struggle to stay awake...

T

[Myca]

What does it do? Is a nerve medication or a pain medicine or what? I have an appointment with yet another uro on Thrusday so I will ask him.

[MakinIT]

Topamax started as an anti siezure med, I think much like nuerontin and gabatrontin etc...I was a special ed teacher and when it first came out a parent told me he was trying these new meds for him and to count his seizures and intensity, quantify his behavior (make his behavior on a scale,1 an angel 5 a monster..and this young man could give monsters nightmares) he was never hungry anyway so that was a concern and his dad just wanted us to offer him whatever he'd eat. (Entering puberty at 5'8 and 110 pounds for a boy is bad news)

seizures never dissapated. His behavior "improved" only because he became docile, me being on it and understanding what is happening to me...I understand the lethargy. he just lost the energy to toss that chair at j But it has virtual cut off migraines and when I try to taper off Migraines returns...it also helps with deep nerve pain. That is what they are finding with this drug. they don't even market it for epilepsy any more. I lost hell o lot of weight (80 pounds) but put 30 back on when they put me on a new anti depressant. Talk about an Ocxymoron..."take this to feel better even though I feel like a moo cow.

You usually start at 50 mgs then work up to 150mgs. sometimes less sometimes morel

Gotta go, I am struggling to stay awake...(The ol' eye roll to the back of my head. ]:rolleyes:

[Myca]

But at the same time, the last thing I need is something that will make me even more lethargic than I already am. I have sero energy as it is. The weight loss is always nice especially since most of these cause weight gain and what woman wants that.

[MakinIT]

Just remember..medications treat people different. I am very sensitiv to meds and if there will be sideaffects,i get. I even get funny after tastes with cetain foods....just try as low a does as as possible.