So tired...and nervous...and frustrated...
 

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 :hug:
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?

:hug:

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 :(

:hug:

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 :hug:

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 :D).

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
:hug:

So happy you are home already and alert enough to be on NT - wishing you a speedy and uneventful recovery!

Hope you rest well,
Tessa

Hi Lottie! Thanks for the well wishes :) I think RSD/CRPS can spread to anywhere. I do not have RSD in my bladder, I have Interstitial Cystitis..which I read that it can be associated with RSD. Who knows!?! Dr thinks that it is RSD that is spreading to...umm...my lady parts. There are meds that they use specifically for IC, but I cannot take them. They also use a lot of the same meds for IC that they use for RSD and I cannot take any of them. I am gonna inquire about the suppositories that zookester mentioned to me.

Thank you all for the well wishes. Everything seemed to go pretty well. No laminectomy needed - YAY!!! Doctor said it all came out without issue. I have dissolving stitches so I can shower with the bandages on and then change them after that. Of course I am having surgical pain in all four incisions, but it is nothing compared to the pain I felt from the implant surgery.

Aside from the incision pain, I am already feeling relief where the front/side battery was twisted and hurting...that feels promising :)

Gonna sign off now, got a bad headache and feeling a little groggy!
Nanc
:grouphug:

Yea Nanc!
Glad surgery went o.k. so far, & really glad you posted to let us know!
I really hope you'll find other pain relief now that SCS's are out.
I will look forward to knowing about your progress.

Glad everything went well. Rest up and keep us posted on how you are doing.

Hi Nanc, I'm glad your surgery went well. I hope you feel better soon now that your SCS's are out. My thoughts and prayers are with you.

Thank you all for the well wishes.

I had a couple of rough days there. The pain was soooo much worse on the 2nd and 3rd days. Today was better, thank goodness. Demerol has been the only pain med I could tolerate (get headaches but can deal with that). Anyway, I took a higher dose as prescribed and had some hallucinations and double vision...very scary for me. So, that is not gonna be taken again! I am now having to tough out the RSD and surgical pain, which sucks.

I really think they were rough on me with the breathing tube. My throat is still raw and have coughed up blood the past couple of mornings. My husband has changed the bandages on all four incisions every day as instructed and that has been hell.

I know this part is temporary and I will get better everyday, I just want to be there now :)

Thanks for listening...Nanc :hug:

Oh Nanc, I'm so sorry hon. Me too, I wish you were there now. It's coming though... Hang in there girl! I sure wish there was something that would work. Having to tough it out is no good. Can you get a doc on call to get you something else called in? I feel for you... so sorry hon. I hope things ease up soon! :hug:

I wish I could take your pain away Nanc. I remember when I had my endo surgeries in 2012. They gave me demoral because the morphine didn't help with the pain. The demoral helped, but I got hullucinations too. It was really scary. I remember not being able to talk for the first day because of the tube they put down my throat. That really hurts afterwards when you wake up. I ate lots of ice cream. That seemed to help. But I had it in milkshake form and only vanilla. I hope you heal quickly and the pain subside soon so that you feel better. I will pray that you feel better soon. Take care.

Hi Nanc, Glad the Doc was able to get this done for you. Now, we gotta get you through this post op time. Demerol is a difficult drug for many people, get switched to something else. Don't let the productive cough go on without a doc examining your throat. Hoping this is behind you soon. Let us know how you are doing. Best ~Lottie

Thanks again, you guys are awesome! Demerol has been the pain med I have been taking for quite some time. I have tried everything else...you would not believe my allergy/can't tolerate medication list (it always throws them at the hospital). My dr has racked her brain trying to come up with something and no luck. I cannot take anything in capsule form because I am deathly allergic to pork = gelatin capsule. No lyrica, cymbalta, tramadol, neurontin, nucynta, dilaudid, morphine, methadone, fentanyl patch, percocet, the list goes on and on...I am truly at a loss. I may call my PCP tomorrow anyway to ask her since she is the one who manages all my meds.

I figured I would see how I am in the morning, if more blood comes up and if so I will call the dr. My husband goes back to work tomorrow and he works an hour from home. His sister said for me to call her if I need someone, she can get here from her work quicker than he can. My mom and dad wanted to come help me out but my sister had her achilies repaired the same day as my surgery...they needed to stay in town and help her.

Oh nothing is ever easy is it??

Thanks again!
:grouphug:

I couldn't agree more right now. No.. nothing seems easy. I'm so sorry Nanc! And my goodness, that is so tough that all those meds and more are on the no list. That just makes this ride even more fun hu? ... joy! <sigh> I just hate that for you. I do hope that they can find something to get you so relief quick! I hope you feel better soon. :hug:

:confused:Not sure if I got this right...so I thought I would ask..did you or do you have the nerve stimulator?

I had two SCS's (spinal cord stimulators), one cervical and one thoracic, implanted June 2011. Had a revision in Nov 2011 on the thoracic SCS - percutaneous leads changed to a paddle lead and the battery relocated to the front/side. Had both of them removed last week.

AWW Nanc,
My heart truly goes out to you!!
I'm following your posts & am thinking of you!

My CRPS hand can't take much typing right now.
Can they inject something or do a nerve block(s)?
I'm wishing you relief! :hug:

Thanks Di! Sorry your hand is bothering you so much. I have had so many nerve blocks, they do not work on me any longer and I started having bad reactions to the steriods and meds....there's a shocker :eek:

I did sleep fairly well (for me) last night. I was hurting so much yesterday that I broke down and took one demerol and I did ok with that...it helped me sleep :)

Hoping things go smoother for you very soon. ~Lottie

The fun never ends :rolleyes: It has been a week since my surgery. I do believe that I am allergic to adhesive...ugh! My husband had to change my bandages every day for the first week and that was torture! We tired a couple different types of bandages. My skin around each incision has been red and itchy. The past couple of days it has gotten so much worse. The itching has been keeping me awake at night and driving me CRAZY :eek: This morning it is even worse...I do not have bandages on, only the steri-strips. It is all red and inflamed under the strips (and ITCHY!) on all four incisions. I called and talked to the dr's assistant and she is gonna talk to the dr and call me back. Took some benedryl in the meantime :Yawn:

The surgical pain has eased a lot in three of the incisions, which is great! The front incision still bothers me a lot :( BUT, the pain I was having from the battery that was there is gone....I noticed a difference in that pain right away :D I think the nerve damage in my left shoulder/upper back is worse (caused from initial cervical scs implant).

Thanks for listening and for all the well wishes!
Nanc
:grouphug:

Dear Nanc :hug:

My prayers are with you as you get through all these different types of pain. Wow, you are one brave gal and I hope you know what an inspiration you are.
I'm so glad to see that pain is easing slowly but surely.
Now for the itching! :eek:
...this too MUST pass!!

Rae
:grouphug:

Hey Nanc, have you tried a tape that is like a paper tape for lack of known exactly what it's called. I hope you feel better soon hon!

Hi Vrae! Thanks! I tried the paper tape, my mother-in-law brought me some. It still irritates me. The doctors office told me to remove the steri-strips and put bacitracin on. All of the sites have been oozing big time, especially the front one. Because any tape bothers me, I put the gauze pads on and then put on a tank top to hold them in place and then a t-shirt over that. I have changed clothes four times from this afternoon until now. For bedtime, I put like six doubled layers of gauze on the front incision, a dry tank and tee...this was half hour ago and it is already soaking thru. My sister-in-law is a nurse so I called her earlier today and she said if the oozing is clear and there is no blood, it is ok. I think one of the stitches popped last night on the thoracic incision. Tonight it hurts and is burning.

I have never had incisions//surgical sites ooze like this and I have had a lot of surgeries. I just don't know what to make of this. All I know is that I am fed up! NOTHING goes right. I went to a neurosurgeon so it would be better this time...thinking it was not a good idea...I don't know.

Well, I gotta go change this gauze again :(

How about Tegaderm film? lol.. remember how we are both allergic to gel coatings, I am also really sensitive to adhesives and dissolving stitches and have learned that Tegaderm flim works extremely well. I always ask for plenty whenever I am at the hospital.

I really hope you aren't infected and hope you wake up tomorrow with no more itching/oozing from this.. you've been through enough!

Thanks Tessa! My husband actually got that tegaderm film. We used that for several days and I broke out from that too. Ridiculous!! That film was much easier for my husband to use (one-handed) too!

I sure hope I'm not infected. Husband told me to wake him up if I feel worse and we will go to ER. If it is still bad in the morning, we will probably go.

That is just awful, I am sorry. Do you have a fever? I am so sorry Az-Di wish there was something that you could use that wouldn't cause you grief while you are healing.

:hug:

So the oozing has finally slowed down, but the itching and hurting is still there. I tried hydrocortisone cream on the area around the incision and bacitracin on the incision, as directed by the nurse. Broke out more from the hydrocortisone. I called the dr yesterday and they wanted me to come in. Dr said everything looks ok, surgically, and it is definitely an allergic reaction to the liquid adhesive they used in surgery (mastisol is the name of it). Dr suggested using benadryl cream where I was using the hydrocortisone, as well as taking oral benadryl. Tried that last night and damn if I didn't break out more from that. I only slept about 1 1/2 hours last night because the itching and burning. There are raw looking spots on two of the sites.

Yesterday I started getting burning, shooting pains in the area of the front incision...I hope and pray these aren't RSD pains.

I just want this to be over with!

Nanc, I'm so sorry I've come to your thread so late...must be a brain fog thing...

You've had such a rough time girl, I'm so sorry things haven't gone a little easier with the removal of your implants. It's all so damn unfair with this disease.

Have you looked at trying Manuka honey on your surgical sites? I know it sounds crazy, but Manuka has been known to help with wounds and skin conditions for hundreds of years, and even surgeons are using it now it's coming back onto the medical radar... It's got antibacterial properties, and is very unlikely to cause irritation, unlike traditional meds and dressings. I use it on my mouth ulcers, it's the only thing that clears them up (and quickly), and my daughter used it to clear a sore in the corner of her mouth that she had had for weeks. I've used it on small skin sores as well, although I know that's nothing like what you're dealing with.

Here's a link to the Manuka site where they talk about it. There are also medical papers about using it to clear up infected and reluctant wounds, although I struggled to find anything but the abstract. I'll keep looking.

http://www.manukaonline.com/surgical...-benefits.html

You can obviously check with your surgeon (does he have an email address?), but it might be worth a go.

I really hope you start to feel better soon, it must be exhausting. I'm thinking of you, and hope to hear some better news soon. Hang in there, things will get easier.

Bram :hug:

Hey Bram! No worries on the late arrival...I understand! I will see a post and plan on returning later to respond and will completely forget about it.

Yes, it has been rough lately. Looking for a break...somewhere! Nothing seems to be going right lately. It is getting so frustrating. Hopefully things will turn around soon.

Thanks for the info on this Manuka honey, I have never heard of it. Looks very interesting. I do not have an email address for this surgeon. I only saw him once before surgery, but I can usually get his assistant on the phone easily.

They are calling for a good snow today and the temps are gonna drop quite a bit for the next several days. I am feeling it, but I love the snow. It will be nice to watch it fall from my recliner :) Good thing is that I do not have to go out in it.

Thanks again Bram :hug:

Nanc

Hi Nanc, I just wanted to let you know that I was thinking of you and that I hope you're feeling a little better today. Try to get some rest as you watch the snow fall. We are expecting about six inches here. It just started to flurry. I'm staying inside too on my recliner. Take care. I will be praying that you feel better soon.

know exactly what u mean
 

hello everybody,i had back pain and hip pain after the scs implanted on jan 2013 well since may i was complaining about flare ups and pain in my surgical site areas and my md keep telling me nothing was wrong plus the fact that my case in wc took until jan 2014 to get authorization from the insurance to reposition the scs battery to my abdomen,let me tell you the relief i get from the scs to my affected foot work at lest 60% but the back pain,hip pain and flare ups were consuming my energy day by day until the past jan 21 2014 when finally it was switched to my abdomen it feels different since the first moment I'm just waiting to heal completely and take the staples out and try again but the pain is for now control in all ways ,did work for me at least for know so I'm willing to try again otherwise i wont have any further surgery to fuse my bones on my right affected foot, i hope this time work as is supposed to and have the chance to be able to work my company had not allowed me to return with any kind of modifications is a year already lucky for me I'm union member and thats gives me 3 more months to be off and hope to get better at least in 1 so i can continue with my normal life,I'm i pharmacy technician,this is my life what i love to do and who i am with the scs problem and crps flare ups i kind of loose my identity and is getting me so hard because i don't see a day without trying to be normal,hope to all of you whatever decision you take just try one more time maybe this time will work,we all have faith and desire a future the most normal possible is hard when is not like that and we face all kind of challenges to at least go on with a single day,wao, i swear never in my life i imagine such a horrible feeling but the feeling of been not useful on any area of a daily life,i just keep my hopes high and always which we all get better soon,we might never find the answers to every question but been in touch with each other make us understand that we are not alone and we are here to support each other because in that big,huge world outer no many people know how much we struggle in life,is so sad but this is not who we are,we are not capable to do all the things normal people do but for sure we are what others are not, we are fighters, and no one will take that feeling away from any of us because we are the ones who are teaching other like us to stand still and strong, there is always a rainbow after the storm hope this new year we all can see it at least once,we deserved, hope you all doing better this year I'm also including myself because i also need a shiny day to feel everything except pain,pain won't take us down ever because we always will fight back, blessings to all and as always i wish the best. :grouphug:

Sorry u r hurting
 

Hi nanc,
I hope that you are starting to feel better from your removals. Sucks that you had to go thru all of that. Just a suggestion for bandages next time you need them....a bandage called OPSITE. I don't know if it is sold OTC, but I am sure ur md could get u some. We would use it on kids who were allergic to everything else. May be worth a try.
I also get horrible electic shock and stabbing pains in my bladder/ groin area...on the left side where my crps is. It is horrible, so I feel your pain there.
Again, I hope that things are looking up for you now.
Kristin