Today's visit with new doctor - 7/18

David,

Really glad to hear that your visit went so well. Knowing your liking of chocolate, have you ever stopped by Market Street Sweets when you are in Charleston? I think you might find something there to help take your mind off pain for a bit if you stop in on your next visit, or have your daughter send you a care package!

Beachbum

David, I am so very happy that this is a doctor you are comfortable with.  You deserve a break from the intense pain! 

I will tell you that both Ron and I have had acupuncture.  Sadly, it did not help him with his pain; however, he had a relaxing hour or more while there.  They were very big on various types of teas to drink and recommended yoga.  It helped me a little bit but not worth going more than 8 times.

 

I hope these tests being ordered will help in discovering a way to relieve your pain!  Our prayers are with you!

 

Hugs,

Aimzee & Ron

David, glad to hear you have something going. Hope things turn the corner for you. You might want to think a little about the acupuncture recommendation. What have you got to lose, except maybe a little of your pain and discomfort?

I can tell you from first hand that it helped Lynn tremendously during her last year with her struggles with pain.

Good luck to you.

Sonny

Tall Allen, my father had a DBS January '97 at OSU Medical Center. He was the third person, first from Ohio, to have this particular surgery. He was able to maintain a very good lifestyle for a couple of years until another tremor reared it's ugly head in the same arm...he chose to not have another surgery. I am far from a DBS although my ET has progressed the last 4 years quickly.

Best wishes to you should you have the surgery...
Kathy

Sorry David for intruding on your post. Thinking of you and hoping for better days ahead. K.

Post Edited (KJ63) : 7/22/2013 12:22:46 AM (GMT-6)

Update: July 25th

Been on the new nerve med for 6 days now, all it does is give me low level nausea the entire time, and I mean all day. Not enough to throw up, but enough to make you want to skip eating. Eating 1 small meal a day in the evening at most. Also gives me low-level headaches. I am a person that virtually never ever gets headaches, so I find that side effect unpleasant too. And while it may be too early yet, it has done zero in the pain department.

The new doctor wants me to stick to it for 3 weeks, and I am trying my best to be compliant to this test run. She said in advance, that it may not work for me. I will say the jury is still out.

Then there is the cost. This 30 day bottle of meds costs me 150% more than all my other meds combined, geez, it's amazing what drug firms can get away charging, especially when there is no generic.

The FDA just gave the maker a 5 year extension on the patent only a month ago.

David

Thanks, Ken.

Fortunately, I can still lose a few pounds, plus the summer heat doesn't make my appetite any better either.

As far as side effects of this new med, appetite loss, nausea, and headaches, top the list of common ones, trying to tough it out to give it a chance to work. I agreed to 3 weeks, and 3 weeks it will be.

I use to do consulting work for a guy that ran a hynopotis and acupuncture center, and all I will say, he was the biggest fake on the planet, gave me a bad taste for either of those things. He was trying to convince me once, that there really wasn't such a thing as cancer, it was all in the person's mind. Pretty scary, huh? Sad thing, I think he really believed what he was pushing.

david

Dave/Purg,
Like you I am a non-believer and laughed at your comments. I should bite my tongue, but aren't there enough faith healers in your part of the country without importing more from India? Anyway, I wish you well!
Bill

Just to share my experience with acupuncture.

When it is done by QUALIFIED and EXPERIENCED doctor, it is effective. My FIL has stroke a few years ago and half of his body could not move. He started acupuncture while he was still in hospital and he could regain mobility with just a cane within 6 months. Given his age (85+), he probably could only move around with wheelchair if he just sticks to the western medicine.

What I want to stress is that only qualified doctor can do the trick. With inexperienced and unqualified personnel, it is probably a waste of money and unnecessary pricks by needles. My daughter (treated for stress) once has a session with a student acupuncturist and she screamed when the first needle was stuck in (it really hurts if the needle is not stuck at the right place). Luckily his mentor stopped him and did the rest of the treatment.

Winnie, thanks for the advice, will consider this. If I had it done, it would be done by professionals through one of our largest hospital systems, not with a kook as I described above.

Aimzee, Will consider your acupuncture story too. With Ron and Tramadol, that's a med that has to be weaned off of, if you need some serious advice aside from his doctor, start a thread at HW Chronic Pain, several there would know the right way to do it. Sorry he's having this issue and dizzy spells.

Congrats on the bike ride, my wife is getting itchy for me to buy her a new bike.

Hugs,

David

David,

I'm just curious why you wouldn't want to give anything and everything a try w/ things being so bad for you? You never know what may help you.... I don't think the acupuncture will be the miracle cure for you (but, hey, who knows) -- but, as with everything, if it knocks your pain down - even 5% - wouldn't that be a good thing?

If you truly think you have CRPS or whatever your diagnosis ends up being - I would really recommend you being open to trying just about anything (within reason, of course). There's no risk, per se, of acupuncture.... and even if it just ends of being a "placebo" effect.... if it helps, it helps.

RE: your nerve medication -- as we've shared numerous times on the CP board.... it can take a month or better for those types of meds to even start showing signs of helping. I'm on Neurontin.... and I was going to give up on it after 2 months of being on it and feeling like it wasn't working..... I'm so glad I stuck with it. I just need an increase in the dose -- and it's completely taken away 85% of my burning nerve pain, numbness/tingling in my hands/feet, etc. Had I just given up on it after a few weeks - I might still be suffering.

If you aren't having a substantial decrease in pain after upping the fentanyl to 125mcg -- I personally think that's an indication of opiods not being the only answer. That's why I can't understand why you wouldn't explore any "alternative" method.... because all of the traditional means don't seem to be helping much.

So... as the others have said - I'd really give it a try (from a professional, of course).... or be open to any other traditional/alternative route.

Take care.
--Tina

Tina,

The med is not Lyrica, I chose not to mention it by name ,until I know if I will be staying on it. Today is day 10, and have had low level nausea every single day, and mild headaches, and its killing an already diminished appetite. And while it may be too soon, it has done zero on reducing any pain. In fact, while I am not blaming the med for this, I have had even more "severe" days ever since.

As far as the "wheel chair" comment. Not coming from me, its now 3 doctors that suggested that it were CRPS at an advanced state, that could be an outcome. Not saying it will ever happen, nor do I have a proper dx. at this point. Only repeating what they said to me. And no, doesn't worry me, just don't want to end up like that, have enough QOL issues going on, sure don't want to add to them.

I am a realist. I don't believe you can think yourself better or worse. Things are what they are. Plenty of positive minded people succumb to their illnesses and diseases every day, regardless. I like facts, and I don't like sugar coating. I like to know what my odds are, and what to expect. How things actual turn out depend on some many other factors.

If I could click my fingers and wish the pain and the cancer to go away and leave me alone, I would do it in a heartbeat.

As far as the new med, even the new doctor was doubtful that it would help, but she wanted me to try something I hadn't been on, while they are setting up the new tests ahead. I agreed to try it, figured it wouldn't help.

Thanks for your advice,

David

David, I can vouch for true Chinese acupuncture it did work for me. I had a whiplash injury to my neck from a auto accident. I had done 3 months of PT with the ortho and was getting no improvement at all. My sister finally convinced me to go to her dr, who was an MD and he went over to China and trained to learn acupuncture. Back then insurance did not cover it as it was not an accepted form of treatment, so I paid out of pocket. I was scared to death because I am afraid of needles & the thought of those needles scared me.

I went for an appt and he explained everything to me and told me it was pretty painless. He told what to expect and said if I was no better after 3 treatments then it was not going to work for me. True to his word it really was painless. I also responded very well and was pain free in 9 treatments. I could not believe it. I cannot explain very well but the pain moved around in my neck and shoulders & according to him if it was helping this is what it should do. I was very skeptical but he made a believer out of me. His practice was incredible, he had so many patients. My sister was able to put off having a cervical fusion for about 12 yrs because she could keep the pain down with acupuncture.

It would possibly be worth a try if it is ever offered to you. You don't know till you try it. There are a lot of people out there that say they do acupuncture. I would only agree to the Chinese method.

You had mentioned on the CP forum the dr had given you a script but you could not remember what it was. What did your dr rx to you, if you have started it I hope it helps.

Take care....Susie

beejane,

it's important in this thread to realize there are two separate "acupuncture" story's.

the one, is about the quack I did consulting work with, and I can't imagine anyone not thinking the guy was nutty as a fruit cake.

the other, is from a legitimate doctor, the new doctor, who's facilty offers full pain related services, including extensive physical therapy, and among other offerings, acupuncture. In that context, I realize its a legitimate method for some with pain control. But I am hardly the other person that doesn't put much stock in acupuncture. There are those that are big believers in it, and those that don't. Let's just say by nature, I am a skeptic. But I have never said I would refuse to try it. Going to run that aspect with my oncologist and see what he thinks about it.

you are making conclusions that simply aren't true. the increases in the fentanyl patches have helped at different times. I have two distinctly different types of pain days. I have "regular CP days", where my meds, including the fentanyl and the Lortabs work pretty well. but then I have what I call "severe CP days", and on those days, not convinced any amount of meds would work well, outside of being in a hospital receiving IV level pain meds, which of course, isn't going to happen.

Yes it was talked about by doctors outside of HW CP, don't know where you got that idea from. I am happy with the quality and standard of care by my oncologist. I feel I am in safe hands, with a very caring doctor, and he freely spends a lot of time with me and my case. His nurse has been like an angel to me, and has true empathy to what I am dealing with, and acts as a great liaison between me and the doctor.

My doctor said from the very beginning with my relationship with him, over 2 years ago, that I was dealing with an unusual amount of serious pain for a cancer patient that wasn't into mets. But as he said, with the amount of radiation damage I have, it would be understood, and difficult to control.

It's a complicated situation, with no fast or easy answers, and that should be understood by anyone following my journey. Just the way it is sometimes. I have had to undergo many set backs and complications, from surgeries, through radiation, through the Urostomy surgery, to the CP, and to the ongoing chronic fatigue. Not been an easy path.

I am handling things as well I can be expected to, and hoping, we will have better answers soon, so that my pain management can be adjusted to what is learned. It still may have nothing to do with CRPS, but now 3 doctors are suspect of this. Aside from some upcoming tests, its often a question of process of elimination to reach the proper diagnosis.

What we do know, is that it is not any kind of orthopedic issue, so that has been eliminated. Severe nerve damage can be difficult to treat, and can be unfixable in some situations.

Thanks for your interest,

david