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Old 09-27-2006, 03:34 AM   #1
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Chronic Pain - nothing helping

I would be very grateful if you could listen to my story and let me know if there is anything else I can do/try that hasn't already been done.

I am a 36 year old male and up till about 2 years ago everything was fine. Then, one day pain started in my lower back (just off to my right side) and over the course of 2-3 hours it got unbearable. My leg was shaking and I could hardly move. So, visiting A&E at the local hospital they took X-Rays which didn't show anything but they concluded I had a disc problem (probably a prolapsed disc). They told me to go home and rest for 6-8 weeks to give it time to heal by itself. They gave me painkiller medication (dihydrocodein & nefopam). After 8 weeks things had not improved and the medication was not working - just making me feel very queasy and lethargic.

Returning to the hospital they decided to give my physiotheraphy and accupuncture. Accupuncture didn't do anything for me and neither did the physio. In fact, over the course of 3 months it made the pain worse.

They then decided to do an MRI scan. I had this, then had to wait 2 months for the results and an appointment to see the consultant! He said that the scan showed "degenerative changes" but nothing which would explain the amount of crippling pain I was in. He referred me to a Pain Management clinic who tried various medications (including Fentanyl patches and loads of other things) and nothing helped relieve the pain. The consclusion was that I am resistant to most painkiller drugs so there was nothing more they could do for me.

I then decided to see a private consultant who carried out more MRI's and other scans but nothing is showing up. I saw a neurological consultant who said that everything appeared fine.

Eventually, after 18 months of scans, tests etc they have not located an exact cause of my pain - the consultant says I could have a problem developing but at the moment it's not being revealed on scans. Maybe in a couple of years time things may appear on a scan.

So, I have virtually now been told by the medical profession that there is nothing more they can do for me.

I am left with severe pain in my lower back and right leg which seriously impairs my life.

So, my question is - has anyone else been in this type of situation? Is there anything more I can do to help?

I'm desperate and looking for some kind of relief from the pain so any suggestions would be helpful.

Thanks in anticipation.

Mike

 
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Old 09-27-2006, 07:30 AM   #2
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Re: Chronic Pain - nothing helping

sorry to hear about your pain issue.just wondering,did they just do the MRI on your low back or did they do up to the c spine?if they only did the low back,you really should get the upper spine done as well.it is entirely possible to have pain in your legs from a problem much further up in the spine.since you have basically been told that they don't know whats causing this,going further up in the spine may possibly show something.if that doesn't,go to the brain next.there are many types of brain issues that could present with pain like you have described.possible vascular malformations and other little brain oddities can cause pain in the lower body.

trust me when i say that you just don't know what is actually going on in any part of your body til you can actually see the inside.this was how my cavernous hemangioma was discovered inside of my spinal cord.it was an 'incidental' finding while having an MRI done on my c spine to try and determine which disc i had herniated.the herniation was there,but also the cavernoma.totally unexpected,believe me.if your having any sort of actual pain,it has to be triggering from somewhere,unfortunetly finding that 'somewhere' can take time and many tests.you just have to keep the ball rolin til you can find the answers.

also,do you actually have the copies of all of your MRI reports and other testing that was done?if not,get them.there is most likely a few little things in there that you were not ever told about.most docs wont tell you everything that is in the MRI report,just what "they" feel is pertinent and nothing else.these reports could give some clues as to something that the docs may be dismissing only because they don't have the knowledge or experience to identify your particular problem.there really are alot of pretty clueless specialists out there who have just never dealt with certain things before so they don't have a clue as to what the signs and symptoms are.i saw three seperate very knowledgeable neurosurgerons who all gave me very different info on my cavernoma.i was really really shocked at the way different info they each had.the first two were at like polar opposites but the third one,i saw at the U of M,and it was only him that really had the experience and the knowledge to really tell me what i was dealing with and what needed to be done.the other two NSs just didn't really have enough actual hands on experience with what my issue was all about.my third one was the head of neurosurgery at a very highly regarded medical teaching hospital with over thirty years of experience.ya just have to keep pushing til you get the answers.good luck,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.

 
Old 09-27-2006, 08:24 AM   #3
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Re: Chronic Pain - nothing helping

if you can get copies of mris get them
try a referal/or if in a insurance group that doesn't require referal find one on your suggested list, to a rhumatologist get general testing, they look at critiaria not just numbers....
If after done with Rhumatologist try a ostopath they use both traditional and non traditional stuff to see what is going on.
While i know you have been through the ringer at the hospitial and certain testing there is always something they could have left out.
From thyriod to ana antiboidies to rh factor. Lots of luck to you and remember your story is common some folks wait years before a doc does enough research with same client and testing and realizes its a) b) c) .....

 
Old 09-27-2006, 09:06 AM   #4
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Re: Chronic Pain - nothing helping

Thanks to you both for your quick reply and advice.

I'll do what you suggest. I have come to the conclusion that finding a good doctor/specialist is incredibly difficult.

I have had an MRI of the upper back which revealed nothing but not had one of my brain - that would seem a logical next step.

I have seen an osteopath but not a rheumatologist. I'll look one up and see what they have to say.

Thanks again.

Mike

 
Old 09-28-2006, 07:12 AM   #5
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Re: Chronic Pain - nothing helping

just a suggestion here mike,but before you will know for sure whther ANYTHING was actually found on your MRIs,you will definitely need to actually see the reports and read them for yourself.honestly,they do not actually tell you what all was found,like i mentioned before,only what THEY feel is pertinent.there very well could be something,even a cavernoma like i had,that some docs just dimiss as nothing really to mention,that IS very very important.its just what THEY think,not actually what is sometimes in the reports.i can almost guarentee you that in at least one of your MRI reports,you will indeed find something that was stated or found that was not actually told to you.that is how common this practice is with most specialists.

you need to obtainthe reports themselves and also the hard films.these will need to be seen and re read by any new doc you will be seeing.most really good professional specialists,wont even actually look at the reports,they prefer to do their own reads on the actual films.honestly,even what is in the actual first interpretation(the original report?)from the radiologist who first interprets your films is only dependant on this particular docs overall knowledge and experience at his job.if he is new or has not had enough actual hands on experience,you are not going to get the whole picture from that doc.you know what i mean?i have had over 16 MRIs done on me,mostly my c spine,and it truely amazes me at the huge discrepencies i have found between reports,its all dependant on who reads them,totally.there is only one rad at the place that i get my MRIs done at who i KNOW knows his stuff.whenever i see this docs signature at the bottom of any report,i know without a doubt that this guy has been very very thorough.unfortunetly you cannot count on every interpretting rad to be great at his or her job.this is the real reason that almost any good speacialist wants to see your films for themselves.this is really really good for you as a patient.its also kind of a second opinion in itself,ya know?just get all of your stuff and look at it for yourself to be sure.good luck Mike,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.

 
Old 09-28-2006, 05:52 PM   #6
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Re: Chronic Pain - nothing helping

hi,
I have a question since they said there was nothing they could do do the have you on pain meds at all? something got to be better than nothing .kelsey

Last edited by kelsey1; 09-28-2006 at 05:52 PM.

 
Old 09-29-2006, 12:23 AM   #7
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Re: Chronic Pain - nothing helping

Hi,

They tried me with various meds and nothing worked. The only thing I have is dihydrocodein and nefopam tablets which *sometimes* can take just a small edge of the pain.

Mike

 
Old 09-29-2006, 07:37 PM   #8
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Re: Chronic Pain - nothing helping

I too am sorry to hear about your pain. You have to keep trying and trying until you find the answers that you are looking for. I spent 16 years looking for answers. And lots of different test. I hope you have a good PC dr. That way you can get all the referrals you need. Best of luck with your searches. I surely hope you can find the answers to relieve your pain. I know that I'm still searching.

Tim

 
Old 09-30-2006, 04:46 PM   #9
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Re: Chronic Pain - nothing helping

Mike,

I feel sooo bad for you. I am in a similiar position with pain in neck/back/shoulder and actually burning pain down the whole right side of my body.

Like you I have had various MRIs of neck, shoulder, and thoracic. And, not very good ones. My thoracic showed "motion artifacts" which might or might not be lesions... geesh. Radiologist said CFS motion artifacts were common and would not repeat test, although I've had lots of MRIs and none with that. Nor had my pain doc ever seen an MRI with that on the report.

Sooo, I find my MRIs kinda useless until, like they say, something just POPS out and says "here I am."

What I am looking into should I ever get another MRI is one done in a stand up or sitting position. Do an internet search for stand up MRIs. I found a place not too far from me and am looking to find one closer.

What the "stand up" MRI might do is find compression or something that laying prone will not. Makes sense to me... Your spine is more compressed when standing and if your pain is while standing and such, maybe it would show up then...

I dunno... Severe pain w/o a diagnosis is tough. The mental anguish of it is as hard as the pain. I have been going through it for 3 years. Each set of MRIs show a little more, but are always dismissed as not severe enough to cause problems.

Like was suggested to you, get your reports and research all you can on what they say. It might lead you to a better specialist.

Keep us posted.

Barb

 
Old 10-01-2006, 12:25 AM   #10
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Re: Chronic Pain - nothing helping

I went through the same jungle as you did. I could not get any specialist to accurately determine the source of my pain after repeated MRI/CT scans etc.A Nuerosurgeon finally after all of this asked if I was ever XRayed.Nope, always the expensive test, so his XRay tech did the Xray and he found that my disk was gone in the L5/S1 area. The other test just showed a small piece of the disk slightly bulging or sticking out a bit and they assumed this surely wasn't causing me my pain. The doctor then put me through the worst test you will ever go through, and told me that too my face, a Discogram.It is where you are awake,on your stomach and they inject a dye solution with a very long needle into a good disk and then into the suspected bad disk and you the patient tell them which shot hurt the worse. The first shot was freaking Hell, but that wasn't nothing, the second shot put me through the ceiling and I couldn't humanly stand the pain.You are not medicated or numbed at all for this test. They then CT scan you with in a few minutes and sure enough the test revealed the disk that they inserted the needle into on the second shot just had a small piece of it left, so off to spinal fusion I went with chiseling and taking bone/tissue from hip,pedicle screws/plates/cage etc. I now have a Morphine pump as the surgery made my pain worse, way worse. I eventually became tolerant to as many LA opiates/breakthrough/Muscle Relaxers that the Law would allow PM to prescribe and now I have about 30-40% of my life back, but everyday is a struggle.Took 3 1/2 years for disability to go through, so now I have an intrecal drug delivery implanted system (Pump), pills galore and still feel like I want to go be with Jesus every day. Good Luck and I hope this has helped you. Sometimes getting a correct diagnosis is very difficult.Exhaust every resource that you can starting with the least invasive and go from thier, I ended up at the end of the line, a implanted Morphine Pump, it is for the rest of my time on Earth so go slow and really explore your options and get second opinions and in some cases you better check out the doctors. The doctor that implanted my pump was arrested and FLED to Syria so be careful who helps you make your medical decisions and lastly PRAY that your situation will improve. GOD BLESS Jeff

 
Old 10-12-2006, 05:48 PM   #11
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Re: Chronic Pain - nothing helping

Have you tried any acupuncture or alternative healing methods?

That does help.

 
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