Hello Again, from Misterkatamari!

Hello and welcome back. I don't believe I know you. Been posting here at HW CP for several months now, but been at HW Prostate Cancer for nearly 5 years.

Wow, you are so young to have such serious pain problems. What are the reasons that surgery can't be used with you? What are your doctor(s) telling you?

Hope you can find the right doctor to help you better with the pain aspect.

Good luck to you, and never give up hope.

David

Thanks everyone.

My pain doctor is a very personable and smart person, I just don't think he knows how to help me. He pretty much said so himself.

I have congenital curvature of the spine (scoliosis) with rotation. It is a significant curvature, but not one that would be treated at my age unless it gets worse. The problem is that I also have degenerative changes to my discs in the lumbar area. I got a herniated disc at the worst/greatest degree of curve in my spine. They couldn't do a discetomy because it would destabilize my spine, requiring the surgeons to do a full curvature correction (rods) up my entire spine. No surgeon wants to do that due to my age, and have referred me to pain doctors instead.

I have some other bulging discs and arthritis, including some in my facet joints to a mild level.

Right now it is unclear whether my pain is still from a herniated disc or if it is due to nerve 'damage' from the previous herniation causing neuropathic pain. That is why I was put on Lyrica and Neurontin, to see if those neuropathic medications would help me...but they didn't.

Basically, my pain is centered in my lower left back. It radiates around the hip and then runs down the top of my left thigh, stopping at the knee. When I lift my left leg (which is slightly shorter than the other due to the congenital scoliosis) it causes a sharp pain to shoot up the back of my leg. The main issue is the first pain I mentioned though, the radiating pain from my lower back and leg. It is like a digging, consuming ache that sort of goes out in waves. It just feels like my entire left side from the hip to the shin are all affected. It worsens when I stand or sit, reclining helps to lessen irritation.

Sorry for going on about it. :P

Hey Patrick and welcome back! Sorry to see your still dealing with the same issues and not getting a lot of relief from anything.

Im concerned mostly over the fact your being treated with naproxen. Not sure how much you take but early out and many years ago when I began this journey I was treated with naproxen and I've known others who were as well and ended up with major stomach problems,I actually ended up in the hospital with a G.I bleed. This is a class of meds Drs trying to avoid opiate treatment use far too long and in the long haul they can be far more dangerous! Im not sure how long you've been on it but like Tina suggested I would speak with the Dr about possibly low dose hydro. Even at the starting dose of 2.5 mgs which is the lowest form the benefits and relief could be greater then continued use of a anti-inflam.

Granted your young and possibly have a long road ahead as a CPer but you've done well holding your own so far. You also deserve some relief. If your current Dr can't or won't offer more help then it may be time to look for someone with fresh idea's.

Good luck to you and glad to see you posting!

Hi misterkatamari,

I remember you well! Too bad that pain remains and issue, but welcome back.

nvrthesame98 said...
Hey Patrick and welcome back! Sorry to see your still dealing with the same issues and not getting a lot of relief from anything.

Im concerned mostly over the fact your being treated with naproxen. Not sure how much you take but early out and many years ago when I began this journey I was treated with naproxen and I've known others who were as well and ended up with major stomach problems,I actually ended up in the hospital with a G.I bleed. This is a class of meds Drs trying to avoid opiate treatment use far too long and in the long haul they can be far more dangerous! Im not sure how long you've been on it but like Tina suggested I would speak with the Dr about possibly low dose hydro. Even at the starting dose of 2.5 mgs which is the lowest form the benefits and relief could be greater then continued use of a anti-inflam.

Granted your young and possibly have a long road ahead as a CPer but you've done well holding your own so far. You also deserve some relief. If your current Dr can't or won't offer more help then it may be time to look for someone with fresh idea's.

Good luck to you and glad to see you posting!

Thank you, I really agree with everything you said. I feel the drugs I am on right now are ineffective and moderately dangerous. For instance, I already had G.I. issues (acid reflux, and IBS related to my anxiety) but these weren't bad enough to need medication in most cases. However, the Naproxen made my reflux way worse, so my doctor put me on another drug, Pronotix to protect the linings along the GI. So right now, that drug is more of an issue than Narcotics to me.

Another issue is the Tramadol. I am allowed to take 100mg (two 50mg tablets at once) twice a day if needed at all. Or I can split up the dosage to 50mgs and take less. Well, after a year of this stuff I am actually completely tolerant of the 100mg dosage. I feel absolutely nothing from it.

I also take Prozac and my Psychiatrist hates the fact that I am on Tramadol because he is obsessed with the fact that it could cause a very very rare but potentially fatal condition called Serotonin Syndrome. Basically, Tramadol has an SSRI in it in addition to a synthetic opiod. It isn't just the opiod that gets you 'up' feeling, it is the anti-depressant as well. Due to that, you can get an 'overdose' of Serotonin which can kill you. These two parts of the medication means that tolerance and dependence are very likely and somewhat rapid. So I've basically quit taking it. How the medical community is so blind to the fact that this drug, Tramadol is actually as dangerous or more dangerous than traditional (natural) opiods, I have no idea. Not only was it ineffective, caused initial constipation for several months, could have technically killed me due to the SSRI, and the tolerance of it. I am glad not to be the abusing type, as I think this medication would be very dangerous to become addicted to. You don't want to mess around with raising the dose of a drug, especially one with a synthetic opiod and an anti-depressant. Doubling or tripling the dose due to one's own tolerance could end up with someone dying...and I bet there have already been some cases of it.

Anyhow, I'm just feeling a bit ranty at the moment. Had a somewhat bad pain day, and some seriously messed up family drama stuff. (Not like criminal stuff, just fighting and crap.)

If this next appointment fails, I may take a bit more drastic action. Essentially, I now---unexpectedly--have been put in the position of receiving a large sum of money due to a legal issue that was settled in court. Due to that, I may indeed choose to move to a more liberal area with good medical reputations.

I set my eyes on a smaller town maybe a. I think I could get better treatment there and possibly not be treated like a child or a druggie.

Plus right now I am three hours away from Pittsburgh, the only place near me I can go to with my state insurance that has quality medicare care and surgeons. Three hours away here, in PA near the Maryland line, would be way better to change into being just one hour away from some seriously high brow medical communities.


But like I said, that idea can't happen here.

Also, the reason why I can't get surgery is because I have scoliosis (around 34 degrees in one area, but it makes an 'S' shape so there are two 34 degree curves. I also have DDD (my discs are lessening in mass and either bulging or herniating in various stages. At least four discs have either bludged or actually 'hernaited' with two exiting into my spinal canal and impinging the nerve root.

The worst herniation is at I guess the 'apex' of my curvature. It is bearing all the weight and the disc material exited into my canal and irritating everything. Anyhow, removing that disc would "destabilize" my spine, as the surgeon at Pittsburgh's Presbyterian Hospital. That means they would have to "fix" my curvature, aka scoliosis via rods from top to bottom--that is the only way to correct both curves.

On top of that, my surgeon said that he could not actually predict how much pain relief I could get from even getting the surgery. He said it is hard to tell on my images which pain is caused by actual remaining herniation or damage, and how much is residual nerve damage/pain (neuropathic) due to the irritation caused on my nerve endings and roots. So that means my major pain could be residual, and thus completely not effected by the surgery. Additionally, my pain may increase simply because of the surgery's requirements.

Basically, all that and my age meant that the doctor was very uncomfortable recommending any surgical intervention at all. He said if he knew fixing my scoliosis would help my pain, he would recommend it, but he honestly has no idea.


Sorry for writing a novel, but I hadn't been on my computer for a few days.

Hope everyone is doing well.



I apologize for having to edit your post as it violates HW rules to talk about the use of marajuana even that used medically.

Post Edited (misterkatamari) : 8/18/2013 9:56:42 PM (GMT-6)

Patrick, I agree that this is a bad policy, but it still is the site owner's decision and so I think it is fair to respect it, given all the other goods that come.

My guess is that he worries about how discussions of MM risk drawing in people for reasons other than medical needs. Perhaps at this point, with 20 states legalizing, the owner could revisit the issue as he is arguably behind the curve, but for now, that's his view.

Perhaps email him and make your case? As well as your congressperson! I hope that once 5 or 6 more states get on board, there will finally be a change in the FDA schedule... perhaps 3 more years -- optimistically.

Im in agreement with you Patrick and have actually asked since times and treatment options have changed. Still as a moderator the administrator and members depend on me to follow the rules set up so HW continues the mission of support and compassion. The rules apply to me as well and just as Peter has set rules, he also has steps to file grievances and is known in the forum to be fair minded and open to new ideas to make HW the best it can be.

I hope instead of moving on you click administrator and shoot him an email asking for his take and reconsideration on the topic. Then at least you will have made your feelings known to the one person who can change rules.

As a mod knowing it is considered illegal, I am glad Peter has this rule in place.The reason being is I am not interested in babysitting a bunch of teenagers that happened to google marijuana and found it being discussed here at HW. That thought is not appealing to me at all.

As far as people taking narcotics,its their choice when they are offered, no dr is twisting their arm saying you have to take these drugs. Patrick if you had been offered stronger medications by your drs I am betting you would have gladly taken that script and had it filled. As it was the drs were not willing to rx much to you because of your age. So, its a bit of the two edge sword s to speak.

Its too bad that you think HW may not be addressing all of your needs. Perhaps you will find what ever it is you are looking for. Take care....Susie

Just want to add that I did put my two cents in to the site administrator, essentially repeating what I said here and calling for an updated policy. There is great potential for cannabis use in the medical field, and studies are being done regarding a variety of chronic illnesses. Obviously, as a community of people with chronic illnesses, we should be including this in our discussions! The epilepsy board, for instance, deserves to be able to have a place to discuss alternative treatments that may be available to them.

I also would just like to note that I find it ironic that I could probably for instance, talk about my father's use of Marinol (synthetic cannabinoid) for his low appetite/eating disorder--and yet I can't talk about possibly using natural cannabinoids for other illnesses on this site. All I am saying is that in my opinion, that is pretty much splitting hairs at this point, and instead of continuing to monitor if someone is saying the 'M' word we could be including more people and creating more discussions.

And yes, I realize that this was all rather off-topic seeming and ranting, but it was indeed related to my original post. My original post being edited due to content concerning the 'm'-word. This is still a legitimate part of me trying to find a treatment that works for my chronic pain.

nvrthesame98 said...
Peter entrusted me to continuously monitor the M word and any other violations of HW's rules regardless of my personal views or feelings on said subject.

In other words Patrick stop attempting to shoot the messenger!

When and if Peter decides to consider altering the rules regarding such subjects I will do what I was entrusted to do and edit posts. Believe me Patrick this jobs not made me popular but its rewarding to know that if I'm doing it to the best of my ability folks like you and me will likely still be able to come here in 5 years and get the support they need.

FYI-marinol is a legitimate, FDA approved and trial tested medication dispensed legally in all 50 states. That Patrick is the ultimate difference.

I just said I sent a letter to the administrator. I never singled you out at all, nvrthesame98. I completely understand that it is your role to do what you must under the current rules. My first post may have seemed incendiary to you, but that was not the intent, and certainly not the intent of my latest post. I was essentially saying that I was leaving the issue, and just putting in my suggestion to him.

And yes, Marinol is FDA approved. I understand the legal difference. I simply disagree with it, and as far as I know--legally, not rule-wise--we are still allowed to speak about both Marinol and non-synthetic cannabinoids and we should be able to do so on online communities as well. Honestly, I'd be happy with a rule specifically allowing for legitimate medical studies and news/treatments--specifically limiting any allowance for self-incrimination on legal grounds. I see no reason why that would be a bane to either the site, the community, the owner, or the hosts. I honestly don't see how we can ever advance medical treatments without those who take part in them or make note of them talk about their experiences. Whether from a professional aspect or purely friendly advice, communicating one's experiences with treatment for chronic illness is key to creating and improving our treatment options and possible quality of life--and in many cases, actually effect our lifespan as well.

Thank you for doing your job on this community.

nvrthesame98 said...
Thank you.

As someone who spent the better part of my life in the medical field I fully back trial and research. Its a necessary element to the progress and advances we make in discovery of new diseases and treatments.

Honestly, if Peter opened the door here for those claiming to have "the answers "? HW would become overrun with oddballs and quacks. If you could see some of what comes into these forums during the odd hours of night? The folks we catch, ban or edit who are recruiting for this study or that study? Researchers whom appear legitimate but click their site link and for your savings or soul they have all the answers to your prayers!!

Those are just the ones that slip through everything Peter has in place to detect them prior to gaining entrance.

In reality MrK there's no way without Peter individually looking at each request to post concerning research and trial studies to weed out the good from the bad,exactly like he requires. He's far more involved in protecting HWs members then most would think.

We are a vulnerable people living with diseases or illnesses that rob us of potentially everything including our very lives. That kind of desperation can cloud our judgment and push a person to grab at limbs that wont hold us causing further harm to ourselves, family and financial security. Im thankful for the gatekeepers who assure I'm not being exploited.

As a parent MrK, I would literally do or try anything to save my child, anything,no matter the cost and consequence. And unfortunately the sad fact is there are folks out there that would be willing to part from me every thing for some "miracle " they hold the secret to.

I know, as every one of us mods knows, because we spend countless hours chasing them out of the forums and deleting those links before someone out of desperation and love falls prey.

I wish you nothing but luck in your search for relief, I understand a life filled with pain and struggle and mostly understand from experience finding the "right " treatment from the "right " Drs is priceless! Don't ever settle for less MrK,somewhere there is the "rights " for you and the search has to continue to get you there.

Thank you very much. Trust me, I am fully away of what can come out of the woodworks, even on completely legitimate, well-moderated communities. I'm still very hopeful for a more mature place to discuss more academic and medical aspects of the treatment/substance mentioned, but for now HW is obviously not ready for that and honestly that is fine for now. It's only one part of what I am looking at, but I think there will be a time when better studies will lead to less governmental issues, and therefor a bit less issues for sites like this one as well as less unsavory people joining simply to get the substance or exploit our members. I honestly think that those progressions will advance us all, and help bring down the illegal market and 'bad people' associated with it a great deal. Until then, it will be difficult for places to have legitimate discussions about this substance, but difficult is not impossible.

So I'll thank HW for all it has provided for me in terms of communication and support. I'll certainly try and help others on here as well, and not dwell on this issue.

Thanks again,

Patrick.

Blessedx8 said...
hey Patrick....

Nice to see you posting again

I think the last time you posted, you were trying Lyrica. I'm sorry that didn't help you....

While I hate to see anyone - especially someone so young - have the need for narcotic medication.... Maybe it is worth a try to see if it helps with your pain. You seem to have tried everything else.

I would bring it up with your current doctor and see if he would be willing to trial you on something... Just to see if it does work for you. Given everything else you've tried, I think it's an appropriate request.

If he's not receptive to at least a trial run, I probably would look at getting another PM doc. Or at least another opinion.

Sorry to cut this short but it's very hard on my hands on this iPad :) but I do hope you can get some pain relief....and I'm glad to see you posting!

--Tina

Thanks. I'm a bit--I'm not sure if this is a little of an overstatement--afraid of narcotics/opiods. Not that I really have drug-seeking or addictive behavior, as I don't, but the tolerance build up overtime and the likely physical dependence on them is rather scary for someone my age. My doctors are afraid to prescribe them (well my general doc would do hydrocodone, but since I see a PM doctor I don't want to step on any toes), and since I am somewhat hesitant about them, I think I will try some other options first.

One issue right now is really that my major hernation is not as apparent anymore, but my pain level is the same and sometimes honestly worse. Injections didn't help, but neither did things like Gabepentin or Lyrica. I explained to my PM that my quality of life is really my major issue right now, and that I have been in the SSDI appeals process since I honestly can't work or function too highly right now. Anxiety and depression are much worse too, mostly due to pain really. Many things are going alright in my life right now, it is really mainly my pain that is still the largest issue.

Anyhow, thanks for the reply especially since you were sorta busy. :)