Re:New Member With Question About Pain and Location of Pain

Posted May 19, 2010 · May 19, 2010

Hi Jan,Ah, the pain doc that said he did "a good job with the RF" so you couldn't have SS.I love it. It's time to dumb this doctor ASAP. Pain management doctors are not in the business of diagnosing a patient's spine problems, just treating the pain.And this one you have is trying to diagnose you and his treatment is not up to standards that he should be following.To start with, and this is from my own personal experience and exactly what my own pain management doctor told me when I used him for epidurals, and diagnostic injections.If a fact injection did not relieve the pain, then it's unlikely that RF would do any good either. But to properly be evaluated as to whether

RF would be a success, it is necessary to have numbing injections to the areas that are suspected to be causing the pain. Lidocaine is used to see if pain is relieved for a period of hours and the patient is given forms to use to detail the relief of pain and where it is located or lack of relief of pain.If those lidocaine injections relieve the pain, then RF has a good chance of being helpful.It can take up to 6 weeks for the RF to work and provide pain relief, but if it doesn't work in that length of time, then it isn't going to work.In your case, Jan, you where not properly tested before the procedure was done to determine if you where a candidate for the procedure.Also, RF is not a cure, it is only a temporary fix, as the nerves will regenerate in 6-18 months and the pain will return; sometimes worse than it was before, sometimes not quite

as bad as it was originally.Also, your primary doctor is not qualified to diagnose you either and is just telling you what the MRI reports state, which is nothing more than a specially trained radiologists opinion and if you take your MRI to several different doctors, you could get several different diagnosis as well.What you really need to do is see an orthopedic surgeon that specializes in spines for a full evaluation and diagnosis.The odds are that a the spine surgeon will want to have a new MRI done as well, as after 4 months, a good spine specialist will want a new one done as too many things can change in that period of time and the 4 month old one will no longer be valid. Also, I would not increase the neurontin either. that is a very large dose to be taking as is and on that medication, you need to have blood tests done to be sure

that it isn't affecting your liver. The higher the dose the more the risk.Are you taking the name brand neurontin or the generic? It is possible, if you are taking the generic form of neurontin that it is not working for you and the name brand will.It is well known with spine surgeons and neurologists that the generic form of neurontin, known as garbapentin is not really equivilent to the name brand.It is an anti eplileptic medication and the efficacy of the generics vs the brand name is very very low. just the slightest difference in the generic, or the ingredients that are used to have the drug absorbed into your body can be different and not work.I know because the name brand worked for me, but the generic wouldn't. As for your pain, the thigh pain is usually is from the L3/L4 vertebrae, especially

if it is in the front of the thigh, but the side can be from L4/L5. But it is also possible that the pain is more of a referral pain from the L4/L5/S1 and is causing the pain.Sciatica is a catch all term form pain and you do indeed fit the definition of sciatica. another strike against your present pain doc.Check out getting into seeing an orthopedic surgeon that specializes in spines only.What major hospitals are around you? that's where I would start looking for a spine surgeon FranFrom: Mike and Jan <mjpittso@...>Subject: Re:New Member With Question About Pain and Location of PainTo:

Spinal Stenosis Treatment Date: Wednesday, May 19, 2010, 10:44 AM

lie

Thank you for your reply. The docs all said no to Sciatica. I have had 2 MRI's, 3 Epidurals, 1 Facet Injection and then as I said, 6 weeks ago had this Pulsed Radiofrequency Treatment.

I have been in contact with Fran and she has been very helpful in helping me go thru my problems. I am awaiting a reply also from her about my pain and symptoms, but in the meantime wanted to know how others described their pain. Apparently, by what I said to the pain doc yesterday and the fact that I am not pain free after his "RF" treatment he made that "stupid" statement that he doesn't think it's SS since he did a good job on the RF. It was almost like he was insulted that it did not work........

Thanks Jan (jp)

>

> Have they ever mentioned the word Sciatica? That is usually when the pain goes down to your foot and then the numbing in the foot is nerve damage. This can be part of spinal stenosis. Hope Fran will answer you. I got sciatica so bad that suddenly I could not get out of bed. That is when I finally had a Laminectomy but until that point you might try pain shots administered under anesthesia. Some people use Lyrica but I couldn't. This manifests itself in different ways. I could not stand for very long in one place or walk for any amount of time-which like you I was able to do. I did both epidurals and physical therapy before having the neurosurgeon do my back. Oxycoton helped me towards the end and I had read about it here but I did not want to take that for very long.

>

> lie

>

Posted May 19, 2010 · May 19, 2010

Jan, I''m listening to Fran. Phew! Sounds like

she's been through the mill and has lived to tell us allllllll about it!

Barb

At 06:19 PM 5/19/2010, you wrote:

>

>Hi Jan,

>

>Ah, the pain doc that said he did " a good job

>with the RF " so you couldn't have SS.

>

>I love it.

>

>It's time to dumb this doctor ASAP. Pain

>management doctors are not in the business of

>diagnosing a patient's spine problems, just treating the pain.

>

>And this one you have is trying to diagnose you

>and his treatment is not up to standards that he should be following.

>

>To start with, and this is from my own personal

>experience and exactly what my own pain

>management doctor told me when I used him for

>epidurals, and diagnostic injections.

>

>If a fact injection did not relieve the pain,

>then it's unlikely that RF would do any good either.

>

>But to properly be evaluated as to whether RF

>would be a success, it is necessary to have

>numbing injections to the areas that are

>suspected to be causing the pain. Lidocaine is

>used to see if pain is relieved for a period of

>hours and the patient is given forms to use to

>detail the relief of pain and where it is located or lack of relief of pain.

>

>If those lidocaine injections relieve the pain,

>then RF has a good chance of being helpful.

>

>It can take up to 6 weeks for the RF to work and

>provide pain relief, but if it doesn't work in

>that length of time, then it isn't going to work.

>

>In your case, Jan, you where not properly tested

>before the procedure was done to determine if

>you where a candidate for the procedure.

>

>Also, RF is not a cure, it is only a temporary

>fix, as the nerves will regenerate in 6-18

>months and the pain will return; sometimes worse

>than it was before, sometimes not quite as bad as it was originally.

>

>Also, your primary doctor is not qualified to

>diagnose you either and is just telling you what

>the MRI reports state, which is nothing more

>than a specially trained radiologists opinion

>and if you take your MRI to several different

>doctors, you could get several different diagnosis as well.

>

>What you really need to do is see an orthopedic

>surgeon that specializes in spines for a full evaluation and diagnosis.

>

>The odds are that a the spine surgeon will want

>to have a new MRI done as well, as after 4

>months, a good spine specialist will want a new

>one done as too many things can change in that

>period of time and the 4 month old one will no longer be valid.

>

>Also, I would not increase the neurontin

>either. that is a very large dose to be taking

>as is and on that medication, you need to have

>blood tests done to be sure that it isn't

>affecting your liver. The higher the dose the more the risk.

>

>Are you taking the name brand neurontin or the

>generic? It is possible, if you are taking the

>generic form of neurontin that it is not working

>for you and the name brand will.

>

>It is well known with spine surgeons and

>neurologists that the generic form of neurontin,

>known as garbapentin is not really equivilent to the name brand.

>

>It is an anti eplileptic medication and the

>efficacy of the generics vs the brand name is

>very very low. just the slightest difference in

>the generic, or the ingredients that are used to

>have the drug absorbed into your body can be different and not work.

>

>I know because the name brand worked for me, but the generic wouldn't.

>

>As for your pain, the thigh pain is usually is

>from the L3/L4 vertebrae, especially if it is in

>the front of the thigh, but the side can be from

>L4/L5. But it is also possible that the pain is

>more of a referral pain from the L4/L5/S1 and is causing the pain.

>

>Sciatica is a catch all term form pain and you

>do indeed fit the definition of

>sciatica. another strike against your present pain doc.

>

>Check out getting into seeing an orthopedic

>surgeon that specializes in spines only.

>

>What major hospitals are around you? that's

>where I would start looking for a spine surgeon

>

>Fran

>

>From: Mike and Jan <mjpittso@...>

>Subject: Re:New Member With

>Question About Pain and Location of Pain

>Spinal Stenosis Treatment

>Date: Wednesday, May 19, 2010, 10:44 AM

>

>lie

>Thank you for your reply. The docs all said no

>to Sciatica. I have had 2 MRI's, 3 Epidurals, 1

>Facet Injection and then as I said, 6 weeks ago

>had this Pulsed Radiofrequency Treatment.

>

>I have been in contact with Fran and she has

>been very helpful in helping me go thru my

>problems. I am awaiting a reply also from her

>about my pain and symptoms, but in the meantime

>wanted to know how others described their pain.

>Apparently, by what I said to the pain doc

>yesterday and the fact that I am not pain free

>after his " RF " treatment he made that " stupid "

>statement that he doesn't think it's SS since he

>did a good job on the RF. It was almost like he

>was insulted that it did not work........

>

>Thanks Jan (jp)

>

> >

> > Have they ever mentioned the word Sciatica?

> That is usually when the pain goes down to your

> foot and then the numbing in the foot is nerve

> damage. This can be part of spinal stenosis.

> Hope Fran will answer you. I got sciatica so

> bad that suddenly I could not get out of bed.

> That is when I finally had a Laminectomy but

> until that point you might try pain shots

> administered under anesthesia. Some people use

> Lyrica but I couldn't. This manifests itself in

> different ways. I could not stand for very long

> in one place or walk for any amount of

> time-which like you I was able to do. I did

> both epidurals and physical therapy before

> having the neurosurgeon do my back. Oxycoton

> helped me towards the end and I had read about

> it here but I did not want to take that for very long.

> >

> > lie

> >

>

Posted May 20, 2010 · May 20, 2010

I had several MRI"s done and they really did not show the blockage. The classical neurosurgeon ordered a milegram for me but forgot to tell me what it was like. it sure as hell showed where my blockage was but felt as though a lightening bolt hit me as they saw it. I then had the headache that goes with milegrams. Can't say I would reccommend a milegram but it did pinpoint the problem. He operated two weeks later. I had to cancel my appointment that I had made for a second opinion.

lie

Posted May 20, 2010 · May 20, 2010

lie,

Not sure what a milegram is, but will do some research on it. From the sound of

it, not sure it's what I need (I also don't do pain well). However, when we

return in August from our 2 month RV Travel, unless some miracle happens I will

be looking for a new doc. The thought of taking 3000mg of gabapentin per day

does not excite me. There must be somthing nerve wise that is causing my pain,

and just taking meds and epidurals is just putting a bandaid on the problem.

Thanks for your input.

>

> I had several MRI " s done and they really did not show the blockage. The

classical neurosurgeon ordered a milegram for me but forgot to tell me what it

was like. it sure as hell showed where my blockage was but felt as though a

lightening bolt hit me as they saw it. I then had the headache that goes with

milegrams. Can't say I would reccommend a milegram but it did pinpoint the

problem. He operated two weeks later. I had to cancel my appointment that I had

made for a second opinion.

>

> lie

>

Posted May 20, 2010 · May 20, 2010

Fran

Yeah, my husband and I came away from the appt with pain doc. totally upset and

confused.

His attitude about the RF treatment and my pain was almost like he was done with

me. Actually, he pretty much said there was nothing else he could do, so just

keeping upping the neurontin (oh by the way my pills are Gabapentin Mfg by

Amneal) so I assume these are a generic from Medco where we get our med covered

by insurance.

As soon as we return in August from our two month RV trip, I will be seeking

another doc. However in the meantime, I almost don't have a choice but to up

the Gabapentin. I am only planning on going from the 1800 to 2700 and will hope

to keep it at that. I really don't want to take Cymbalta, but not sure about

it. Have you or anyone else taken it along with Gab. or Neurontin?

No one has every suggested the Lidocaine and unfortunately I forgot to ask Dr.

Wonderful about them. I guess since he was my second pain doc and read the

notes from the first he would have seen that was never done. Sooo must not have

wanted to bother. Boy do I sound bitter.

We are in Tucscon Arizona. No major fab. hospitals around that we are aware of.

Mayo Clinic is in sdale, AZ, but I don't know if that would be the route to

take either, any suggestions?

I really appreciate all your help and comments along with the others who have

been dealing with chronic pain. Some of you for a whole lot longer than I.

Like all of the others, I just want my life back.

Thank Jan (JP)

>

> >

>

> > Have they ever mentioned the word Sciatica? That is usually when the pain

goes down to your foot and then the numbing in the foot is nerve damage. This

can be part of spinal stenosis. Hope Fran will answer you. I got sciatica so

bad that suddenly I could not get out of bed. That is when I finally had a

Laminectomy but until that point you might try pain shots administered under

anesthesia. Some people use Lyrica but I couldn't. This manifests itself in

different ways. I could not stand for very long in one place or walk for any

amount of time-which like you I was able to do. I did both epidurals and

physical therapy before having the neurosurgeon do my back. Oxycoton helped me

towards the end and I had read about it here but I did not want to take that for

very long.

>

> >

>

> > lie

>

> >

>

Posted May 20, 2010 · May 20, 2010

Hi Jan,Is your garbapentin the tablets or the capsules? Interesting info is that the capsules seem to work better than the tablets. they absorb differently and have been found to be more affective than the pills, but as money is the issue with prescription health ins costs, if they can give you the tablets instead of capsules they will. Tablets cost less to manufacture and therefore cost less to purchase.It could be, if you are using tablets, that the capsules will work better for you.If you are having nerve pain, then you have nerve compression going on or permanent nerve damage caused by the nerve compression.I hate to say this to you though, but a 2 month RV trip is not going to help your pain, but will most likely make it far worse than it

is right now.And, I believe it was in an email, you said that you have gotten very little exercise, which would weaken muscles, cause them to atrophy some, and that can also cause increased pain in your spine, legs etc.We used to have Medco for our prescription coverage as well, and they where always trying to get my husband's doctors to switch him from the brand neurontin to the generic version.He takes very high doses for a seizure disorder.His doctors refused to switch him to the generic because of the serious concern of the generic not working for him and he could be driving down the road and have a grand mal seizure and he has been free of them for more than 25 years now.So we did have to pay a much higher co pay for the brand name, but it was far too risky to switch.Mayo clinic is an excellent place to go, so check that

out.One thing to caution you with though, I would caution anyone with nerve pain coming from the spine, regardless of the cause is this.The longer the nerves are compressed, the better chance of the nerves becoming permanently damaged. That would then cause the nerve pain to also become permanent as well.How long the nerves can be compressed before they are permanently damaged is a problem to determine, as everyone is an individual and it can be months for some, a year or 2 for others, and years for others.The sooner you can see another spine surgeon the better it will be for you and your pain as well as your nerves.And it is true, that epidurals are usually a short term fix and need to repeated over and over again every year, and meds are just a mask as well, unless they are being used in conjunction with other forms

of treatment and are for short term relief OR, you are suffering from permanent nerve damage OR, you are not a candidate for surgery because of other health issues or repeated surgery has failed to relieve your symptoms.I personally only took neurontin for about 6 weeks, prior to my surgery and I had to stop taking it because of some serious side affects that resulted in sores and blisters in my mouth that ended up becoming infected and having to take antibiotics for it.But do know others that have taken it for some time for pain relief and then had surgery. The most I have ever heard of anyone taking is 1800mg a day for the relief, and many of them found that they had to switch to the name brand neurontin from the generic because the generic didn't work and when they switched to the name brand they did get pain relief and with a much lower dose.Unfortunately, the

generic forms of neurontin are really not equivelent to the name brand drug. Even though the FDA says it is, far too many neurologists have found that it is not and it can vary from one batch to another that a manufacturer makes as well as from one manufacturer to another.The generic manufacturers are allowed to have a range of garbapentin in the dosage and not an exact and the buffers that are added to the pills or capsules are different than the ones that are used in the name brand neurontin. this can make a huge difference in the actual amount of the actual drug you are getting into your system as well as how it is absorbed.If you have any kind of digestive disorder, then you will absorb the meds differently than the average person and you are better with the name brand neurontin than the generic form.One other suggestion with the generic form of the drug that

you are using. Do your best to take it at the exact same time every day and spread the dose out evenly throughout the day and night.Garbapentin/neurontin has a very short half life. That means that if you are supposed to take the meds for example 3 times a day. you should take approximately every 8 hours. If you go longer than 8 hours between doses, then you body no longer has the full level of the drug in your system and it will create havoc with your pain.Also be sure to slowly increase the dose as this can be a tough medication to adjust to and needs to be done very slowly over a period of days and weeks.And if you decide to decrease the dose after increasing it, be very careful to slowly do so. Sudden decrease of neurontin/garbapentin can cause anyone taking it to have sudden onset of grand mal seizures, which is a common reaction to this medication

regardless of what you are taking it for.FranFrom: Mike and Jan <mjpittso@...>Subject: Re:New Member With Question About Pain and Location of PainSpinal Stenosis Treatment Date: Thursday, May 20, 2010, 7:08 PM

Fran

Yeah, my husband and I came away from the appt with pain doc. totally upset and confused.

His attitude about the RF treatment and my pain was almost like he was done with me. Actually, he pretty much said there was nothing else he could do, so just keeping upping the neurontin (oh by the way my pills are Gabapentin Mfg by Amneal) so I assume these are a generic from Medco where we get our med covered by insurance.

As soon as we return in August from our two month RV trip, I will be seeking another doc. However in the meantime, I almost don't have a choice but to up the Gabapentin. I am only planning on going from the 1800 to 2700 and will hope to keep it at that. I really don't want to take Cymbalta, but not sure about it. Have you or anyone else taken it along with Gab. or Neurontin?

No one has every suggested the Lidocaine and unfortunately I forgot to ask Dr. Wonderful about them. I guess since he was my second pain doc and read the notes from the first he would have seen that was never done. Sooo must not have wanted to bother. Boy do I sound bitter.

We are in Tucscon Arizona. No major fab. hospitals around that we are aware of. Mayo Clinic is in sdale, AZ, but I don't know if that would be the route to take either, any suggestions?

I really appreciate all your help and comments along with the others who have been dealing with chronic pain. Some of you for a whole lot longer than I.

Like all of the others, I just want my life back.

Thank Jan (JP)

>

> >

>

> > Have they ever mentioned the word Sciatica? That is usually when the pain goes down to your foot and then the numbing in the foot is nerve damage. This can be part of spinal stenosis. Hope Fran will answer you. I got sciatica so bad that suddenly I could not get out of bed. That is when I finally had a Laminectomy but until that point you might try pain shots administered under anesthesia. Some people use Lyrica but I couldn't. This manifests itself in different ways. I could not stand for very long in one place or walk for any amount of time-which like you I was able to do. I did both epidurals and physical therapy before having the neurosurgeon do my back. Oxycoton helped me towards the end and I had read about it here but I did not want to take that for very long.

>

> >

>

> > lie

>

> >

>

Posted May 21, 2010 · May 21, 2010

Fran,

The Gab. I am taking currently is caps (300 mg each)

I have taken the 600 mg tablets before this current prescription. I know my

next shippment will be the tablets again.

I am not sure, but then maybe I never paid attention, that it made a difference

in my pain management.

I do try to take the meds at the same time. I know first hand what happens when

I forget. Three times in the last 6 months I went to bed without and woke in

the most worst pain ever. Up to this point, I never had to take any medication.

It's hard to deal with.

I am also concerned about taking too much of the Gab. Right now I take 600mg am

and 2:00pm and upped the bedtime ones to 900mg on Tuesday night. I will keep

this at schedule for another few days (week total) and then maybe try 900mg at

breakfast. Just with traveling, I don't want to get sick.

So how do you ever get off these things, if the withdrawl is so bad?

This RV trip does come at a less than good time for me. We do need to be in

California, My daughters ex had custody of their twin boys age 9 taken away in

Feb and he is fighting it, so they go back to court June 7th. The hope for me

is that just being able to relax as my husband drives the motorhome, I will feel

better. If we don't make it to Canada, I will be really disappointed, but then

there is always another time. And worse case we know of some very good docs and

hospital in the Bay Area.

I am worried about my lack of activity, but at this point I will wait until I

see someone to determine what I really need, ie PT or ? I don't want to cause

worse pain.

Thanks as always for your help and understanding

Jan (JP)

>

> >

>

> > >

>

> >

>

> > > Have they ever mentioned the word Sciatica? That is usually when the pain