Why, Why, Why, Why?

[JANENE]

Hello Everyone!!!

I don't know how to get this through my doctors head.

I had a L5 Laminectomy & bilateral foraminotomies at the L4-5 & L5-S1 levels, ithey also found conjoined nerve roots at both levels as well that they seperated (whatever that means, I have still never really been informed with what that was) November 2004. I am not going to go too deep into the history or you will be reading this FOREVER!!!!

Most recently I have been having right sided pain, that makes my leg feel stiff, and causes muscle spasms in my leg ( I think thats what it is??)

I went to my doctor the other day to tell him that I needed something more for the pain and spasms and as well how the leg likes to give out, and when I drive or sit for too long my leg will go numb, and the stiffness seems to get worse. He has put me on Neurontin, I am up to 2700mg daily, and it is not making a difference....

My doctor told me he is not comfortable with giving me more narcotics, and that I have to learn how to deal/manage with my pain.....then I lost it and told him that I think I deal pretty well considering, that I have 4 kids to deal with everyday.....blah, blah, blah..

So after a long discussion, he decided that ok he will increase my pain meds.....then I had asked him what I was suppose to do about all the "new" and weird (to me) symptoms I have been having with my right leg..He said that the meds should help with the pain. But then I told him that wasn't what I was talking about, and it was the part that my leg goes numb when I sit for too long, which makes it EXTREMELY difficult to drive. The stiffness, and the pain along with the fact that the leg like to give out from under me.....etc. He told me he thinks the right leg problem is from my antaligicgait?

I don't know what to do about all this....ANY HELP/ADVICE/INFO WOULD BE GREATLY APPRECIATED!!!

Thank you for reading my NOVEL!!!

Janene

[mmglobal]

Janene, I 'm working with a client who has similar issues... I'll know much more in a week or so. I've had other clients with similar issues that have been discovered to be related to pathology away from the spine... classic sciatica symptoms but due to a variety of malformations, injuries or other pathology in the hip / glute / piriformis / hamstring area. Again... very similar to what you describe.

However, if you are dismissed as so many spine patients are (especially women), without the benefit of serious consideration of the new symptoms... your medical team may be overlooking something very real and fixable.

Another issue is that many spine surgeons are taught that such issues are so rare that they hardly even beleive they exist and will not give them serious consideration.

Keep in mind that I'm not suggesting anything about what you have or may not have. I'm just saying that you need to be taken seriously and be evaluated by someone who will consider something other than: "you're done'... no more options."

Mark

[JANENE]

Hey Mark!!

Thanks for reading my post!!!

Well you know, thats what I am trying to say to him. That THERE is something going on with my right leg, and when I first told him about it in November he looked at it to make sure it wasn't a blood clot etc.. It wsa at that point that he decided that it was coming from my back..HE DECIDED!!

So, here I am 3 months later and the problem is not getting any better and depending on the degree of pain in my back, depends on the degree of pain/stiffness/weakness etc..in my leg.

THIS ALL IS SO FRUSTRATING!!!!!!!!! How do people deal with this so well??

I just HAVE no idea at which way to turn, and what to do about it...

Anyways, thank you again Mark for your reply/help.......

Janene

[JANENE]

BTW Mark.....................

I unfortunately Do not have a "MEDICAL TEAM", I have a one-man team, who is just my GP.

[fortitudine]

Hi Janene,

Your GP is making these diagnoses and decisions???? I'm thinking he should be referring you to a spine surgeon PDQ!!! Can you ask him to do that?

[dshobbies]

Hi Janene,

I think most doctors go for the simpliest explanation before ordering tests or making referrels. It's the 'new' medical system. We, on the other hand, immediately tend to think the worst. Well, sometimes it's simple and sometimes it isn't but we all deserve the absolute best medical care we can get. If your doctor doesn't want to bother looking further, demand that your symptoms be taken seriously. You don't want them just masked over with medication, you want the cause found and cured if possible. If we don't stand up for ourselves, few other people will.

Good luck, Dale

[grima6]

YOU ARE NOT ALONE!!!!!
iAM ALSO A MUM OF FOUR KIDS (3-14) AND HAVE BEEN TOLD FOR PAST 2 YRS THAT i HAVE TO ACCEPT MY DISABILITY AND JUST LEARN TO "CONTROL MY PAIN" !!!!!! cONSIDERING i HAD ALL 4 KIDS NATURALLY WITH no ANALGESIA i CONSIDER MYSELF TO BE ABLE TO TOLERATE PAIN QUITE WELL BUT THISPAIN IS A JOKE!!
yOUR SYMPTOMS SOUND MUCH LIKE MINE. i HERNIATED MY DISC TTHROUGH A WORK INJURY AND HAD adr AT L5-S1. POST-OP I HAVE LOWER BACK PAIN THAT FEELS LIKE INTENSE BURNING AND THIS TRAVELS DOWN THE BACK OF MY LEGS ALL THE WAY TO MY TOES. sOMETIMES IT CHANGES TO SEVERE MUSCLE CRAMPING IN BUTTOCKS HAMMYS AND CALVES. THE LONGER I SIT (usually 10 minutes will do it) THE PAIN IN MY LEGS DRAMATICALLY INCREASES. AS THE PAIN INCREASES SO MY MOBILITY DECREASES AND I NEED A CANE. I HAVE BEEN THROUGH SO MANY DRS AND TRIED ALL THE NARCOTICS BUT WAS SEVERELY ILL ON ALL OF THEM, ANYWAY HOW DO YOU LOOK AFTER KIDS WHEN YOU ARE KNOCKED OUT!! i HAVE HAD A NEURO-STIMULATOR IMPLANTED BUT AM FINDING THAT IT HAS VERY LITTLE EFFECT IN REDUCING MY PAIN. AUSTRALIAN DRS ARE NOT WILLING TO TOUCH ME BUT I HAVE HAD DR ZEEGERS FROM THE ALPHAKLINIK LOOK AT MY SCANS AND THERE MAY BE A LIGHT AT THE END OF THAT LONG LONG TUNNEL!
IT INFURIATS ME MY PHYSIO KEPT TELLING ME THAT I WAS PERCEIVING MY PAIN TO BE WORSE THAN IT WAS, I MEAN HOW THE #!@* does he know. AND HOW CAN YOU "MAKE" YOUR PLANTAR REFLEXES ABSENT??? AS ANY BACK PAIN PERSON KNOWS IF WE COULD BLOODY WELL WISH AWAY OUR PAIN DON'T YOU THINK WE WOULD!! i mean DOH!!!!!
TAKE CARE JANENE YOU CAN EMAIL ME AT grima6@bigpond.net.au if you need to chat! P.S HAVE ALSO TRIED nEURONTIN, LYRICA EPILUM WITH NO RESULTS!
Lorna

[rob_zzz]

Janene,

If its any benefit over the past couple of years I've started to change the way I think about Dr's - they're meant to work for you and if they're not doing their job properly sack them and get another one.

If this Dr is not helping you get to the bottom of your serious leg problems then you need to find one that will. It is a complete waste of time working with a Dr that doesn't recognise the serious nature of your problems. The other thing I would say is that most GP's (in Australia anyway) do not seem to have very good understanding of spinal disorders so a specialist (spinal surgeon, or a good neurologist prepared to do a thorough clinical diagnosis) is likely to be able to give you better answers.

You might also find that a doctor that specialises in treating sporting injuries could be helpful as well as they've often had more exposure to these types of back and other problems that can cause these sorts of symptoms. I've also found that sports physicians seem to understand that you don't want to just 'get by' - you want to live - and so can help in directing you to specialists that work more in line with that approach - and will do it sooner rather than later.

But don't be afraid to shop around until you find someone that will actually help you - they are out there (somewhere ...).

all the best with it,
rob

[dshobbies]

Janene,

Another thought would be to see a pain managment specialist. While he won't diagnose the cause, he/she is used to seeing pain and might suggest where it's coming from. He can treat your pain and may recommend another doctor who can diagnose and treat the symptoms.

My surgeon was Dr. B in Germany. Dr. Lauryssen in Beverly Hills is overseeing my post-op care but my pm is caring for me on a monthly basis, making sure I'm comfortable and watching over any new procedures I'm interested in.

You need to be out of pain but also on your feet and thinking clearly. A pm specializes is this type of medicine.

Good luck, Dale