At least I have my Husband and Maine Coons

[Kara29]

I am working on getting answers to my nerve damage. My Surgeon from Boston is also helping as well as my Surgeon in NYC. Even though I am sad about having severe nerve pain as a result of all of my urethral surgeries. I am grateful that I at least have a Husband and two Maine Coons that love me! I took a nice photo of us tonight and put it on my journal.

Kara:angel:

[tabasco32]

I hope they give you answers soon kara.
I will pray for you tonight.
lisa marie

[ihurttoo]

I hope they give you answers soon kara.
I will pray for you tonight.
lisa marie
Me too! Love and hugs, Amy
P.S. That is a great pic of the kitties! It looks like they are posed! :)

[Trishann]

Me too! I hope they can find help for you Kara.

Sending hugs and more hugs,
Trishann

[ICNDonna]

Kara, you've come so very far. Hopefully when you have completely recovered from your surgeries, you'll feel much better.

Sending gentle hugs,
Donna

[Emma's Mommy]

i hope you find someone who can help you!! Just remember you are still recovering....a year from now you will hopefully look back at this and be glad it's all over b/c you will be feeling much better!

[Silverfox]

Dear Kara,

I understand about the nerve sensations. I have been diagnosed with severe peripheral nerve damage. They tell me my painful symptoms are called "distal sensory polyneuropathies". Besides my urethra I have this severe burning in my hands and feet. It changes from time to time, and I take medication that may someday heal it. I have a most severe case. My current IC Dr. at first told me I was very rare, but I kept pushing him to go to my favorite web sites to learn further.

My Doctor did this, and he read the writings of a Veterinary Neurology Prof at the veterinary school near my home. He agreed that from his understanding now, that I was right and not crazy and not rare. He said to "tell others on the internet, so we can change our medical care". He explained that I or others who needed to take the same medication that I am treated with, would never be used by the specialists here at this large medical school..... :mad:

I am getting treatment by my Internal Medicine Doc. near home, who is very aware of my neuropathy disease and the causes. The hard part is to treat neuropathy pains. There are many causes, and peripheral nerve disorders are very common, trauma like surgery is only one cause. I have been diagnosed with a metabolic disease and it was the cause of my "distal sensory neuropathies". I also have some autonomic nerve damage.

Over time, I am improving and I have always had great hope of making a complete nerve recovery, and I always tell my IC Doctors this. They know my goal is to recover from this nerve damage. You must try to keep believing this will get better and your nerves will heal. My IC Doc. is attending the IC conference this week.

Kara, I pray for you to receive relief and for total healing of your nerves.
I enjoy seeing all your pictures, and your maine coons very lovely animals. I have adopted two Cavalier King Charles spaniels and they keep me very busy, but will not join us on our bed, they are scared of falling off:puppy:

Hugs, Silverfox

[Judith56]

Kara, never give up the hope that over time the nerves will settle down and finally give you relief. You really should give it at least a year after surgery before feeling like this is the way it will always be and even then never give up hope. Most people who have phantom pain/feelings have the most intensity in the first few months, and usually after a year has passed the feelings dissapate, so please, continue to give it time.

[massagedoula]

My husband has nerve damage on his left ear and around the scalp due to getting stabbed during a carjacking 5 years ago before we were married. It as gotten so much better each year. He still has numbness and cold neuropathy, but it doesn't itch or hurt anymore. I hope that yours will get better over time too.

[Kara29]

Judith,

Didn't you mention somewhere that you had horrible urgency after your first augmentation and they had to do a process of killiing the nerves to the "urgency area" and then having to have some nerves killed around another part of your abdomen? At what point in time of your recovey did you have your denervation done and it would seem that yours did not settle down after a year if you had to have this procedure done?

Thank You for sharing your experiences with the rest of us so we know at what point to take other measures instead of suffering in severe pain? It appears that you became extremely happy with your bladder removal after your had the denervation. It must have been excruciating to have to live like that, I should know! Were you able to take medication during that year to lessen the urgency and pain? If I could take a medication to lessen the pain I sure would then my "year" would go much more smoothly but I can't.

I have lost 8 years of my life to this urgency and I'd like to not LOSE anymore.

Kara

[Kara29]

I am highly allergic to:

Morphine
Demerol
Methadone
Compazine
Anzemet
Reglan
Bactrim

Medications that I have tried for this nerve pain.

Several Different Birth Control Pills
Fertility Drugs
Accupunture and Relaxation
Elmiron
Dicyclomine,
Ditropan,
Ditropan XL,
Detrol,
Detrol LA,
Pyridium,
Pyridium Plus,
Buspar
Urimax
Enablex
Pyridium
Claritin
Zyrtec
Ranitidine
Allegra
Soma
Felxeril
Benedryl
Hydroxizine
Celebrex
Vioxx
Levsin,
Celexa
Lexapro
Paxil
Prozac
Zoloft
Doxepin
Elavil
Desipramine
Sinequan
Imipramine
Cymbalta
Effexor
Wellbutrin
Trazodone

3 different Nerve Blocks (I think they were some sort of hypogastric Nerve Blocks)
Nerve Stimulation (Interstim targets nerves in back S1, S2, and S3 around the bladder)
Tens Unit
Botox
B and O Suppositories
Moprhine
Demerol
Fentanyl
Methadone
Dilaudid
Hydrocdone
Oxycodone
Darvocet
Ultram
Lyrica
Neurontin
Topomax
Tegretol
Lamictal
Clonidine
Injecting Lidocane and Marcane
Valium
Xanax
Ativan
Klonopin
Serepax
Baclofen
Guiffenisan

(There are so many more things that I could not think of on this list of things to take away the urgency)

Interstim 2001
Cystectomy 2002
Urethrectomy and Indiana Pouch 2006

You can see why I don’t want to take any more medications, especially with all of my allergies. Regardless of my Allergies, I’ve still been willing to try just about anything.

When I came out of my Urethrectomy and Reconstruction, I specifically asked for them to NOT give me anything for the pain so they just did an epidural. So you know I am in severe pain or I would not be complaining! I went through my whole reconstruction without any pain medication. I am a fighter, but this is one "urgency" thing just brings me to my knees. I've done nothing but cry for 6 months!

That is why I asked my current surgeon what to do and that is when he found out about this temporary Spinal Anesthetic Trial run and then it gets turned over to a Neurosurgeon if it works for the pain and they do the denervation. My Surgeon in Boston is in agreement too regarding this.

Kara

[Judith56]

I had the denervation done several months after the augmentation in hopes that if it could reduce the urgency then maybe the augmented bladder could be trained to hold more urine. This was actually my surgeon's idea- I did not seek the surgery, it was done at the same time they removed bladder stones which were too big to pass and causing a continuing infection. As it turned out about 1or 2 months later I had another cystom done which showed that the new bladder and remaing parts were totally riddled with IC so even though I did have the denervation it really was a waste as the reason I had to constantly cath was due to the IC not so much urgency from the nerves. I am also embarrasssed to admit that I felt my uro used me to experiment on, trying out his theories and also hoping that what he would do would help my situation. I was not as informed about hings as I am now, nor did I know at that time how to access that information. This was long before people had personal computers and medical info was readily available to the public.

When I had my bladder out and had the ileal conduit made I also had the feeling of still needing to "go". This is when I would go sit on teh toilet till the feeling would pass. This was pretty intense for several months and with time it slowly went away.
As for the abdominal nerve block/killing of the nerves, that was for chronic abdominal pain, of which we are not sure of the exact cause but most likley it was a result of all the surgeries I had. This did work extreemly well for me after the intial recovery period. As to taking pain meds during all this time, I have to tell you I did not have much as my doctors did not like to give them to me, so by gritting my teeth and doing things to deal with it, I got through it. I had a family to take care of, I worked, etc. Somehow I just did things and at times if I could, I would go up to bed and lay there, but I was rarely able to indulge in that luxury. I also have to say that alot of the meds you listed were not around then.

[Kara29]

Please understand that I am not seeking surgery. In fact because I can't find one medication on that long list that I have tried, that helps the pain and I am allergic to so many pain medications , I can't do the pain pump. I don't want to do the stimulators because they would have to remove my Interstim and I am very sensitive about that. They would have to remove my Interstim and then put in these stimulators that are not even predicted to work after TWO Invasive surgeries. Talk about being an experiment.

A treatment that works for one person for example, sitting on the toilet to relieve the urgency feeling may work for one person but not another. This treatment method does not work for me. If it was that easy, don't you think I'd be sitting on a toilet right now typing away? And what works for me, may not work for someone else.

My pain may be not related to the type of pain you experienced. It's not fair to make a comparison. It's not fair to make opinions on how long we should live with the pain. It must have been horrible for you to have to wait for a year. Why would I have to wait for an entire year before I get up and do something about the pain because others have said after a year it goes away. What's to say mine won't go away? I could wait for ever...I am proactive with my treatment plan and wish not to wait for a whole year. Please respect my wishes. My clock is ticking and I can't do anything with this pain. I am happy that you were able to grin and bear it for a year but this is not the case with myself. This type of pain takes my breath away and brings me to my knees.

I want to be clear about this!

This temporary spinal anesthetic is a trial for treatment for intractable pain, not surgery. If you wanted to know where I got this idea from, it was suggested to my Surgeon by the World Renown, Dr. Moldwin, specific to my very own case. "Dr. Moldwin is perhaps the most well known urologist treating IC in the world today, due in great part due to the authorship of his book "The IC Survival Guide," considered the best book ever written on interstitial cystitis." So the idea was not entirely mine. Even if it was I have a right to treat my pain.

All I wanted to do was try this. This would be no different than trying another medication, it just goes into a different part of my body. It would be no different than an IC person wanting to try Elmiron or Interstim to get their life back. If the Spinal Anesthetic were a success then maybe surgery would follow in my case. I don't consider lying in bed in severe pain all day a luxury. I thought it was a glimmer of hope to move forward, upward, and onward when I read that you had relief with your denervation in a previous post.

Kara



When I had my augmentation done and I still had terrible urge problems they did something called denervation. It was done by the urologist who had done my augmentation. They somehow can identify certain nerves and remove them. When I had really bad chronic abdominal pain I saw a pain doctor who was also an anesthesiologist and he did this thing where they injected stuff right into the nerves which killed the nerves. I had ot stay overnight in the hospital and it toook a couple of weeks to get over the procedure but after I healed the pain was pretty much gone!