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Can't take this pain anymore..need some advice


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Old 09-12-2006, 04:03 PM   #1
fburky
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Can't take this pain anymore..need some advice

Just found this website. I've had a cervical fusion at C5-6 and a lumbar fusion at L5-S1 (within three years of one another). I've continued to have pain for the past three years and no one seems to listen to me. Surgeon says no reason for my pain and that "I'm surgically correct". After reading some old posts here, it sounds like I have occipital neuralgia as I have those same exact problems. Can a person have this condition even after a cervical fusion? I can't take this pain anymore and often wish I would just not wake up when I go to sleep.

Also, on top of that I still have pain in my lower back from not only the lumbar fusion but also from having a broken tailbone and having had several falls on that part of my body (mostly falling on black ice). I haven't been able to sit on furniture of any kind for about 8 years and have to always sit on the floor. I haven't been able to work for over 2 years and my life continues to become more and more restricted in order to try to deal with all of this. How can I tell if my pain in my lower areas is from the lumbar fusion area or my broken tailbone? This is all too much!

Any advice would be greatly appreciated. I have purposely avoided pain meds. because they really wierd me out and even I don't like being around me when I'm on them. I'm thinking about trying to get a referral to a pain management clinic in the hopes that they'll be able to figure out why I continue to have pain. Thanks!

 
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Old 09-12-2006, 07:27 PM   #2
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Re: Can't take this pain anymore..need some advice

Hello...I would highly recommend you get a referral to a good pain management clinic. There may be some different meds or procedures that may help your pain. I've been at a pm clinic for about a year now, and I am amazed at the variety of options they have available. Not all help...and sometimes you end up at the end of all the trial and error looking at lifetime pain management...but enough people get relief that it definitely makes it worh trying. If nothing else, a pm doc will at least know some alternatives to medication for long-term pain control. But it sounds like somebody needs to find out where your pain is coming from; if you can find a pm doc that isn't afraid to refer you to a surgeon, neurologist, etc, when necessary, he/she may be able to point you in the right direction for a diagnosis. It also helps to have someone who understands pain and the impact it has on your life, and is willing to help!

I can only speak from my own experience, of course, but I do think you need to research further to get some help. Take care...
Donna

 
Old 09-13-2006, 09:06 AM   #3
fburky
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Re: Can't take this pain anymore..need some advice

Thanks for your response!

I see my PCP on Monday to hopefully get a referral to the pain mgmt. program. I think part of my frustration and angst is just not knowing what's wrong with me. Have spent a small fortune over the past several years with various doctors and still no correct diagnosis. If I'm told I have fibromyalgia one more time I'm going to scream!!

If you don't mind me asking, why are you going to pain mgmt.? Thanks, Fiona in Columbus, Ohio

Last edited by fburky; 09-13-2006 at 09:07 AM.

 
Old 09-13-2006, 09:42 AM   #4
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Re: Can't take this pain anymore..need some advice

Hi Fiona...what a pretty name! I was in a car accident 4 years ago; had a lot of damage to my shoulder...shoulder surgery helped, but I was still having a lot of pain in shoulder, arm, hand and face nubmness, shoulder blade and neck/head pain. My docs diagnosed TOS (thoracic outlet syndrome), which is damage to the muscles and/or nerves in the brachial plexus area between neck and shoulder. It's not very amenable to repair, although there is a risky surgery that can be done but doesn't always help much. I opted to follow through with the surgery on the discs in my neck, hoping that would bring some relief and more of a normal life. Too soon to tell, although hand is still numb and I'm still having the same problems with my arm and shoulder blade. To be honest, my pm doc didn't think this surgery would bring much relief, but my NS held out a carrot for me by saying, "Maybe it isn't even TOS, maybe all your problems are coming from your neck..." The TOS surgeon also felt it would be worth trying. As my husband said, if I never tried this, I never would have known if it would have helped or not. If all it relieves are some of the neck spasms and headaches, then I will still feel it was worth it. But, although my NS says give it more time, at this point (5 weeks post op), the arm problems seem so much the same as they were pre-op that I really don't think it helped with that, and I am still looking at long-term pain management for TOS.

Sorry...long answer to short question, but it's been a complicated four years! I hope you can find someone who is very knowledgeable, and will help you find relief for your pain. One of the things that I've had to come to grips with is that I may have to learn to deal with pain for the rest of my life, and also that doctors can't fix everything. This is something my son has had a hard time with...he keeps insisting that the doctors "do something", but they simply cannot fix everything. But I think for most people, pain can be brought to a manageable level...we may not get full function back, but at least we can live with it by learning what causes flares and avoiding them, and getting the best pain control possible.

Take care...Donna

 
Old 09-13-2006, 10:56 AM   #5
fburky
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Re: Can't take this pain anymore..need some advice

Hi! Sorry to hear you've had to go thru so much! It gets old, doesn't it!!

Question for ya'...have read a little today on what pain management is, and it sounds that it's for folks who've been told there's no other options open to them other than trying to manage their pain as everything else has been done, med-wise, surgery-wise etc.. I'm wondering if I should try to see a neurologist/neurosurgeon instead as I don't even know what the problem is yet and that pain mgmt. would be down the road if no remedy can be found. Am I right in thinking this? Fiona

Last edited by fburky; 09-13-2006 at 11:12 AM.

 
Old 09-13-2006, 12:11 PM   #6
bdh7
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Re: Can't take this pain anymore..need some advice

Hi again...from what I can tell, it seems some clinics are more end-of-the-road sort of places, and some are more involved in intervention. My pain doc is actually a physical medicine and rehab doc (PM&R)...some are anesthesiologists or other specialities. At my doctor's clinic, which is actually called "Center for Regenerative Medicine", or something like that, he does a lot of interventions, such as radiofrequency ablations, steroid injections, IMS (intramuscular stimulation), nerve blocks, facet injections, and so on and so on. He does pain management at the end of everything else...not to say that he doesn't treat pain while he's trying other things, which he does. He is the one who referred me to the TOS surgeon. He does tests and simple x-rays, but for anything like an MRI he would send me to a different doc. I have heard of clinics that have "contracts" with people regarding medications and treatments...he doesn't do anything like that (that I'm aware of).
Maybe his clinic would not even be considered a pain management clinic...I'm afraid I don't really know a lot about how other ones operate. There is a pain management section on these boards where you might be able to get better answers. In your original post it sounded like you'd already been to a lot of docs who couldn't find anything specific; if you haven't had any studies done recently (EMGs, MRIs, etc.), it does seem like it would be a good idea to be seen by a neurologist or neurosurgeon first. If you trust your PCP, I'd ask him/her what he thought about that.

Hope you can find some answers!
Donna

 
Old 09-13-2006, 01:27 PM   #7
fburky
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Re: Can't take this pain anymore..need some advice

Thanks for your help! It sure makes me feel better knowing there's another person who understands, to some degree, what I'm struggling with. Let me clarify...I've never seen a neurologist or neurosurgeon. My dr. is an orthopaedic surgeon and he told me that my ongoing problems couldn't possibly be related to my spine as he felt my spine was just fine after he did my surgeries. I've spent the last year looking into possibly having some type of muscular disease, but those specialists have concluded that I don't have any muscular disease and that my symptoms sound "structural" in nature. I don't want to go back to my surgeon 'cuz I know he won't listen. My PCP is okay, but I'm lucky if she talks to me for three minutes whenever I see her, she's always in such a hurry. I feel like I'm pretty much trying to figure this out all on my own. That's why I think that boards like this and people like you are a real blessing. God bless, Fiona.

Last edited by fburky; 09-13-2006 at 01:29 PM.

 
Old 09-13-2006, 02:14 PM   #8
bdh7
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Re: Can't take this pain anymore..need some advice

Sounds like a second opinion is in order...if your surgeon is saying "everything's fine" even without any follow up scans. I've found surgeons often have the mindset that once things are fixed, they're fixed, and there should be no more problems. Unfortunately, that's not always the case. You didn't specify in your post what your continuing symptoms are besides pain. Maybe in your three minutes, you could ask your PCP for a referral to a neurosurgeon or, if she won't do that, possibly, a PM&R doc...they specialize in ongoing musculoskeletal issues that are not surgically correctable. If your surgeon's right and there's nothing more to be fixed, a PM&R doc might be the one to see. They are experienced in pain management, and might be able to find you some relief more quickly than waiting for a neuro to do testing. I was sent to see one by the other guy's insurance company for an IME, and he stated clearly in his report (and to me in the office) that he wasn't convinced that there wasn't something more surgically that could be done for me, so referred me to a very high profile ortho surgeon in our state. It was through that doctor's recommendation that I found the NS I am with now. This is to say that a good PM&R doc would not necessarily just assume that there's nothing more to be done...but I guess if it were me and my insurance would cover it, I'd look first at seeing a neurosurgeon.

Keep us posted...
Donna

 
Old 09-14-2006, 11:49 AM   #9
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Re: Can't take this pain anymore..need some advice

Hi! Thought I would offer ideas. There are plenty of people who have had surgery and still have pain, either temporarily as they heal, or long term continuing symptoms.

There are other reasons to seek a pain management doc besides the conclusion "there is no other alternative". A pain management doc may be able to help improve your pain while you continue to investigate. My opinion this shouldn't be done in a vacuum and your primary surgeon and that doc should work together.

If a doctor told me i was "surgically correct" and wasn't further exploring my issues, I would be seeking another opinion. I try to find opposites, i.e. if my primary surgeon is a Ortho Spine Specialist, my 2nd opinion would be a Neurosurgeon and vice versa.

Pain is complicated and there could be no structural cause, it could be lingering - perm damage, brain trained response, or there could be something still to fix.

Last edited by PNo; 09-14-2006 at 11:53 AM.

 
Old 09-15-2006, 07:42 AM   #10
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Re: Can't take this pain anymore..need some advice

since you have never actually seen or consulted with any neurosurgeon,its time to do that.personally,i wouldn't let anyone BUT a neurosurgeon ever touch my c spine.they are just so much more aware of specific nerves and the big differences between the c spine when compaed to the rest of the spine.the c spine is very unique as it contains many many different nerves that do not run down thru the rest of the spine at all.it is very very possible to be suffering some sort of nevre damage that can show up in the head and face just due to the fact that there are nerves that actually run down thru the c spine from the head,junction at the c 8 nerve area,then they loop back up into the head again.the symptoms you described canvery easily be explained by possible nerve damage done suring your c spine surgery.i too suffer with facial paresthesias from extensive nerve damage done right at the c 8 nerve junction,along with actual spinal tract damage.

my best advice to you at this point would be to get the heck away from your current("everything is surgically correct") ortho surgeon and see a good neurosurgeon for a badly needed second opion on possible reasons for your symptoms.my c spine surgery was also 'surgically correct'along with some other crap my first NS left behind for me to deal with.what a cop out.just because something is actually surgically "correct' doesn't mean squat when it comes to the nerve damage that was also caused by the "correct" surgery.

getting to a good pain clinic,also a great idea.i have been seeing mine now since three months after my spinal cord was damaged due to the lastsurgery where they had to dig out a cavernoma.without the knowledge and just the options of my PM to try and reign in this ungodly level of pain i now suffer with,honestly,i would wish for death to come and take me.i now have five seperate pain generators,and two of the worst possible neuro pain syndromes known to man,central pain syndrome and RSD.my PM clinic gave me at least some of my life back.between the therepys and types of meds used to treat neuro pain specifically and the oxycontin,well i feel like i actually want to wake up tomorrow.some days i still want to stay in bed and hide but i eventually do get my sorry butt out of bed and try and get thru the worst days.but it does get old sometimes as i am sure you know.

but between using the neurosurgeon for a possible actual Dx and the pain clinic,this really would be your best bet here really.but you DO really need to find out just what is actually generating your pain process here in order to actually obtain the best form of pain control for whatever the triggers are.

but i would drop that ortho from your little healthcare team like yesterday.also,obtain all of your medical records from this so called ortho along with all records from the surgery,including the op notes.it would really be rather interesting to actually read thru all of what this doc felt about your issues and the notes from the surgery may contain some interesting tid bits of info.you should actually be obtaining and constantly updating all of your medical records anyway.this is honestly the only way i can stay on top of all my medical issues,and there are many.

its just good to keep your own set of medical records at home.i find these very very useful for many things.but at any rate.i really do think the NS/pain clinic combo would really be the best way for you to go when looking at what you are dealing with.this has worked very well for me so far.i wish you lots of luck and hope the new NS you see will be able to offer you some answers along with an actual dx of the real problem.please keep us all posted,K?hang in there,Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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