Disappointed again...

[slipnslide]

I had an appointment with my Hema/Onc today and the CBC came back with elevated WBC's, elevated Lymph's and elevated Atypical Lymph's, however, the good thing was that the counts were lower than my last CBC:).

Having had the adhesion lysis surgery just before Christmas was turning out to be a good thing. It seemed to have taken care of the abdominal pain that I had been dealing with for quite a while, until last week when I started to notice that odd pain on the left side of my abdomen again:(. I honestly thought I was in the clear since it's been 8 weeks since the surgery and everything that I've read stated that adhesions usually grow in the first couple weeks following surgery, plus my surgeon used a new absorbable celophane-like barrier that reduces the incidence of adhesions by 50%. I knew having the adhesions cut out was a gamble, but having been free of the abdominal pain for two months had me believing that I was rid of them for good. I am so disappointed to be feeling the same pains that I thought I was rid of for good.:(

Last week my PM changed my Fentanyl 25 from every 3 days to every other day, and offered to up it to the 50's because my headaches, neck and shoulder pains have been up. I chose to see how changing the patch every other day, along with taking my Percocet 10's every 6 hours would control the pain. I'm now wishing I had accepted the increased dose of the patch because over the past weeks the pain has been getting a little worse each day with not only the neck and shoulder, but recently with the left side of my abdomen too....ugh!

Sorry, folks, for venting:o...I'm just so disappointed with my body.

[Boxerlover]

That's got to be disappointing Slip, thinking something's gone only to know it's back. I can relate to how you are feeling as I just found out I have another kidney stone too big to pass and as I have had too many lithotripsies lately they will probably need to operate. So I am not a happy camper either!
It's so difficult going back to face the same things all over again!

Could you call your doc and ask him to write you a script for the 50's or what my doc did when I was in a similiar situation, he told me to wear 2 of the 25's and then since I would run out early by wearing 2 instead of 1, he had me come in for my appointment a little early and then wrote for the 50mcg's.

That reminds me of years ago when I had neuromas(tumors on the nerves between my toes, very painful!) and my doc decided to give me steroid injections between the toes. There was lidocaine in the shots as well so my feet were numb at first. The very first time he did this he asked if I wanted pain meds for when the novacaine wore off it would be pretty painful. I thought about it and then decided I'd be OK without the meds. I had the shots on my lunch hour and went back to work. By the time I got home I was dying my feet hurt so bad! So as soon as I got home I called and asked if they could call something in for me. When the nurse came back on the line I could hear the doc laughing in the background that he had told me it was painful! He was my ortho and what a great doc.

Melissa

[slipnslide]

That's got to be disappointing Slip, thinking something's gone only to know it's back. I can relate to how you are feeling as I just found out I have another kidney stone too big to pass and as I have had too many lithotripsies lately they will probably need to operate. So I am not a happy camper either!
It's so difficult going back to face the same things all over again!

Could you call your doc and ask him to write you a script for the 50's or what my doc did when I was in a similiar situation, he told me to wear 2 of the 25's and then since I would run out early by wearing 2 instead of 1, he had me come in for my appointment a little early and then wrote for the 50mcg's.

That reminds me of years ago when I had neuromas(tumors on the nerves between my toes, very painful!) and my doc decided to give me steroid injections between the toes. There was lidocaine in the shots as well so my feet were numb at first. The very first time he did this he asked if I wanted pain meds for when the novacaine wore off it would be pretty painful. I thought about it and then decided I'd be OK without the meds. I had the shots on my lunch hour and went back to work. By the time I got home I was dying my feet hurt so bad! So as soon as I got home I called and asked if they could call something in for me. When the nurse came back on the line I could hear the doc laughing in the background that he had told me it was painful! He was my ortho and what a great doc.

Melissa

Melissa,

I feel bad for you. It's not like you really have a choice as to whether to have surgery or not:(. In my case, I chose to do it. As for the neuromas, OUCH:eek:. With the Adhesion Lysis surgery, my surgeon offered to do a Triple Neurectomy for the nerve entrapment I have somewhere along my left hip that is causing pain in my hip, groin, and thigh. I chose to not have the neurectomies because two of my docs said that I could wind up developing Neuromas as a result and that they are extremely painful:eek:. I can't imagine the pain you were feeling when the Lidocaine wore off.:eek:

I'm going to hold off on calling my PM about increasing the Fentanyl because when I first started on the patch, my PM had started me in PT again. Each session would knock me off my feet for the following 2-3 days. The PT wrote a letter to my PM and canceled my sessions because it was only increasing my pain, so my PM and I agreed that I could do the exercises at home since I'm aware I'll pay for it with increased pain, but I need to build my muscles back up because they have become so weak. I'm hoping that over time, the muscles and nerves won't become so ticked off and I won't need the increase in meds (that's just not happened so far :o).

Kim

[Boxerlover]

Thanks Kim! Could you do your own PT in a pool? I'm waiting for ours to heat up so I can start trying to do some exercises in the pool! At least with the gas prices down a little I can heat ours more this year. I barely got in last year because it just wasn't warm enough. I wish there was a therapy pool nearby because I'd just go there. At least with me when I do pool exercises they don't hurt anywhere near as when I do them on land.

I sure hope strengthening them helps Kim. My docs thinks I may have an entrapped nerve near my hip too. I am having an MRI next week. I have been lucky so far with no spine issues so I am keeping my fingers crossed I just pulled something. Yeah, you do not want neuromas, nasty little buggers!!

My husband and I were just talking about that yesterday. I was telling him I really need to be doing some kind of exercises but when I do I am in so much pain afterwards and it also usually means I am done for the day. So knowing that will either mean more work from him and that we might not be able to do as much at least at first until I could see if I could get myself built up a little. He thinks it's a good idea so we will see. It's hard doing it knowing the consequeces we are going to suffer! Repeat after me:What does not kill us makes us stronger!:D

Melissa

[slipnslide]

Melissa,

You mean: "what doesn't kill us, just kicks our azzes!":D;)

Did your doctors tell you which nerve they feel is entrapped and where it's being entrapped?

I don't have access to a pool, at least not until the warmer weather comes and our subdivision pool opens. My g/f goes to pool therapy and she swears by it.

Kim

[Boxerlover]

Kim, I sure did,LOL!!! I can't wait! But the water has to be real warm!

About 8 months ago I got this pain in my L hip. It hurts to sit down and when it's real bad I now use a cane. My one doc ordered a MRI of the hip but it came back clean so my primary thinks it may be a nerve. I am having a lumbar MRI so I guess she is thinking around there. The only spine issues I have are DDD and coccyxdynia so I am not familiar in any spine specifics besides lumbar, thoraxic and cervical:D. So I have no idea what specific she is looking for. If something shows up I guess I will learn real quick. I am hoping I may remain forever ignorant!:D:D

Melissa

[slipnslide]

Melissa,

My PM wanted to make sure that my hip pain was not being caused by something going on in my lumbar spine too. Last year he ordered a lumbar MRI and also tried two test block injections at L1/2 and L2/3 (if I recall correctly). The lumbar MRI didn't show anything, and the injections didn't help. Hopefully they can pinpoint where the nerve in your hip is being irritated so they can successfully treat it.

Kim

[Mark N]

Kim, sorry to hear of your increasing pain. I can imagine how disappointing it would be to have surgery, feel better, and then start getting worse again. I hope you get the new patch soon and it treats your pain better.

[Peter B]

Kim,
My heart goes out to you. I feel your pain. I've made the same mistake you did in declining the increase in meds. I never made the mistake again. I figured that if I don't need the bump in dosage at least I have it in my possession just in case. I know its not as easy to adopt that attitude when talking about the patch but its do-able.

I Hope you find some sort of level of pain you can bare to live with. Good luck Kim,

Pete

[Nana4&cntn]

Kim, I am so sorry your pain is getting worse again, after all you went through! I can't imagine how dissapointed and probably po'ed about the whole thing. Is there anything else your doctor has up his sleeve besides meds?

I had so hoped this last surgery as going to be the trick. I hope there is another solution for you.

What a huge Bummer!

Hugs,,,,,Kathy

[Kathi49]

Kim,

I have been meaning to answer your post. But I have been going to one appointment after another. I am so thoroughly confused at this point and in the middle of various workups that I really can't report anything new other than the frozen shoulder is unfrozen. ;) I am just sorry to hear that your pain levels are up. :( And I just have to say the aqua therapy is something I swear by as well. I am just jealous because Melissa is getting hers up and running and I have to wait until May. But DO try it if you get a chance.

[slipnslide]

Mark,

Thank you. I had a friend ask me if I was going to go back and find out if it's adhesions again and get them removed. I said "what for?...just to have another surgery and for more to grow from that surgery?" I know that sounds negative, but I feel: why try getting them removed again and risk the same outcome.

Peter B,

I declined the increase because of fear of going up in dosage of the fentanyl at the same time as decreasing the time between patch changes from every 72 hrs to every 48 hrs. I know that may sound silly because I'm only on the 25mcg/hr, but I only tip the scales at 124lbs and I was not sure how increasing it to 50mcg/hr would affect me. Like you, I won't make that mistake again.

Kathy,

I think my PM has pulled all the rabbits outta his hat and there are no more;). As for my surgeon, I won't even tell him because he'll just want to try cutting them out again:eek:....Heck no, over my dead body!:p I think for the time being, I'll just wait until they cause me another trip to the ER, and in the meantime I'll just cope with it;).

Kathi,

It's good to hear from you and I totally understand about the running from appointment to appointment.;) I'm glad your shoulder is feeling better. I too will be waiting until May before I start doing any sort of aqua therapy.

Best wishes all,

Kim

[Domzy]

((((((Kim)))))),

My gosh girl I really feel for you, you have been through the wringer!!

Hopefully changing the Duragesic to every 48 hours will help

How is your mom doing?

Take care,

Kathy*butterfly

[slipnslide]

Kathy,

Right now I think you are having worse luck than I:p;). With not fusing, then having the revision, and now worse arm and neck pain, UGHHH, doesn't it make you want to just throw in the towel and give up!?!?:(

As for my mom, she's had a brain EEG, a brain MRI, and tomorrow I take her back to the Neuro to find out the results. Hopefully they will have an answer as to if any of the tests show signs of seizure activity or not, then we will know if she needs to continue on the Keppra or if she can stop taking it. Thanks for asking Kathy, that was very sweet of you to be asking about her when you are experiencing a host of problems yourself!:)

Best wishes,

Kim

[Boxerlover]

Hey Kathi, come on down and you can use mine!;)

Melissa

[Nana4&cntn]

Kim, how did your mom's tests come out? I hope there were no surprises, and that they have a way to treat her.

Kathy

[slipnslide]

Kathy,

The EEG didn't show any siezure activity, but the brain MRI showed a significant amount of white spots in the tiny blood vessels. She is being treated for alzheimers so it really didn't come as any big surprise. We requested a copy of the radiology report and they handed it to my dad so I have not had a chance to see exactly what it says yet. I didn't want to make too big of a deal of it in front of my mom. My sister and one of my brothers both called me this afternoon wanting to know how her appointment went and I was not able to give them details of what the reports said. Hopefully one day this week I'll get a chance to get over to my parents house and read the reports.

Kim