Hi guys!

Well, I sure am tired...been awake since around midnight last night. Tried to take a nap and slept about 5 - 10 minutes. I have been having major pain the past several days. Just when you think the pain can't get any worse...it does

Many of you know from my previous posts that I was recently diagnosed with interstitial cystitis. I had what had to be the worst pain attack (down there) over Christmas at my parents house. I saw my urogynocologist yesterday (just love him) and discussed the type of pain I experienced, thought it might be another condition that sometimes goes along with IC. Well, we talked, he examined me and decided that it was not IC or any condition related to it. He feels sure that it is RSD related. As much as I hate hearing that, it makes sense because the type of pain (lightening bolt, electric shock-like) is just like the pains I get elsewhere, only worse. UGHHH! I am so tired of this...I know you guys can relate to this emotion.

I am also getting nervous about my surgery tomorrow to remove both SCS's I cannot take vitamin C because it could cause my IC symptoms to worsen. I just hope all goes well and I don't have RSD spread in my back.

Thanks for listening
Nanc

Hi Nanc,

I am so sorry!! You will certainly be in my thoughts as you recover from your SCS(s) removal - fingers crossed that you don't have spread from this procedure!!

I'm with you on thinking the pain can't get any worse and then WHAMO it does. The last few days have been utterly miserable for me as well ... I'm actually contemplating risking another surgery to remove the damaged nerves and neuroma(s) that are in my hip because at least one doctor said that the only way to reduce the pain is to get rid of the source. Other doctors of course have said NO WAY you will be worse... but, I just don't know how I can keep going like this I just don't know.. frustrated like you (and many others on this forum), scared and just plain angry at the whole situation!

Since you didn't get spread from the initial implantation(s) that is a good sign, I think?!

Did the your urologist offer anything in regards to what may help your bladder pain issues? Did you ever ask anyone about the suppositories I mentioned a while back?

Thanks Tessa! I am sorry you are having such a rough time. I guess you are up in the air about what to do when your doctors do not agree. I know that has to be frustrating. Keep me posted on what you decide?

I did not experience spread in my back with the implantation, so hopefully that is a good sign. I did develop a problem in my back after implantation, hope that is resolved when they are removed.

I completely forgot to ask the urogyno about those suppositories...
i remembered after I left. I will ask him for sure at my next appt or sooner if
I need to call him (made myself a note). We tried medications that I hadn't tried before and had baaaaaad reactions, so medication treatment is out. He mentioned botox a few times and when I had it for my migraines, I broke out in a rash on my neck and chest within a couple of hours. Dr wants me to get allergy tested to see if it was the botox or the agents added to it that caused the reaction. If it turns out that it was not the botox itself, he wants to inject that in the bladder. We will see. For now, I have to do the IC diet and low oxalate diet...hard to figure out what I CAN eat with that on top of my food allergies and no gluten

Nanc,
I would come hold your hand if I could.
I would be nervous too. I remember how I felt and I only did the trial
SCS, but it was threaded from my lower back to my neck.
Did you ask if a nerve block my help prevent spreading in lieu of Vit.C? Or could you get Vit C. injection?

What kind of anesthesia(s) will they use for removal? I really hope your P.M. has a good plan for post removal!!

Please know you at least have moral support here. I will be thinking of you
tomorrow and hoping for the best!
Di

Thanks Di! I didn't even inquire about a vit C injection, didn't think about that! Didn't inquire about a nerve block either because I had many of them and started having adverse reactions so they won't give them to me anymore

Not sure what kind of anesthesia they will use, only know that I will be out! I did request the same anesthesiologist that I had there in November...he was wonderful!! I am actually looking to change PM doctors after this surgery is over. I did not want the one who put these in to take them out...done with that jerk! I am having a neurosurgeon remove them, figured he would do a better job

Thanks for the moral support

Hi Nanc,

Sorry to hear about your bladder symptoms and possible RSD spread.

What happened with your SCS's ? I've been off NT for a few months, but last I heard you were one of the SCS success stories. What happened ?

I hope that things turn around for you soon.

Good luck Nancy, hope all goes well.

Oh Nanc...I'm sorry things aren't going so well for you right now. I will be thinking about you tomorrow and sending good thoughts and vibes your way. Good luck!

Nanc I am sorry you are suffering. I didn't know CRPS could spread to the bladder. There are meds used for b,adder spasms. Wonder if that would alleviate any pain? Best wishes for an uneventful removal.

Hey finz! Thanks for your reply. Surgey went pretty well (obviously since I am on here right now ).

Regarding the SCS's...I had two (cervical and thoracic) implanted June 2011 and a revision on the thoracic one Nov 2011. They helped me greatly, so much so that I was able to work another year and a half. I was losing the use of my hands. The SCS's helped me with desensitization big time! If I could go back in time, I would do the same thing and get them.

The issues leading up to the removal is that the thoracic paddle lead migrated up and that battery was twisted and hurting. (that battery was moved to my front right side with the revision in Nov 2011) Also, every time I had either one of them on, I would get pain and spasms in my lower back. Reducing the stimulation wasn't effective for me.

Hope this makes sense, just took some more pain meds

Nanc