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Old 11-03-2012, 01:57 PM   #1
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Pain management doctors

I have a question.

First let me backtrack and give some background.

sugeries:

- 1994 lumbar surgery herniated discs;
- 1995 cervical surgery stenosis;
- 1997 lumbar surgery flatback with harrington rodss;
- 2000 cervical surgery kyphosis with harrington rods cervical/thoracic region;
- 2006 Spinal cord stimulator implanted
- 2011 spinal cord stimulator removed.

EMG tests:
- showed severe nerve damage in cervical & lumbar spine:
- severe arthritis; &
- peripheral neuropathy

MRI:

- C5/6 C6/7 myelomalaicia
- Focal cord atrophy in same area

Neurosurgeon is afraid to do more surgery on me paritally because of what the procedure would require. going in thru the sternum just to get to the area of the neck that is the issue.

Other health issues:

- diabetic;
- pancreatic surgery done 2007
- absent left kidney congenital &
- kidney disease right kidney

I have been in moderate to severe pain. Weakness in my arms. difficulty walking sitting standing for periods of time.
radiating pain in the shoulders;
numbness in both legs.

currently on hydrocodone and tizanidine
preiviously on oxycodone and baclofen
other meds over the years including Neurontin; patches and others that I cant recall off hand

Going thru a trial Intrathecal Pain Pump tenatively in December. Getting pre cert done now.

Doctor thinks that once this is done further evaluation needs to be done. And possible felt that I should be seen either at John Hopkins Medical Center or Hospital for Special Surgery in NY.

What testing can a pain doctor do outside of the MRI/CT scans which have already been done. Are there other tests that I am not aware of used specifically by Pain Mgmt doctors? If so what are the tests?

He mentioned something about doing more of a workup after implant but didnt go into detail at last office visit. Wanted to get pump done nnow.

Any input would be appreciated on what a Pain doctor can do that the other doctors cant do?

Thanks for listening.

 
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Old 11-03-2012, 02:23 PM   #2
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Re: Pain management doctors

Pain Management doctors seem to be more knowledgeable in the form of different pain medications and what combinations to try. Most doctors/surgeons seem to dismiss chronic pain and under treat it, leading to more pain. A good pain specialist will not do this.

 
Old 11-03-2012, 02:33 PM   #3
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Re: Pain management doctors

Sxycrvs:

The doctor that I saw in Wednesday is a Pain Mgmt specialist. First time I saw him and really like him a lot. I must have spent close to an hour with him. He certainly didn't rush me out.

As I said in the initial post we are doing the Intrathecal Pain Pump and hopefully that will address at least PART of my issues.

But what we didnt get a chance to really discuss was this. After the pump is in we are going to look further into the cervical issues. And it was at that point the idea of going to John Hopkins came up ofr HSS in NY.
He felt that while the neurosurgeon that I have been seeing is good there is or should be another way of addressing what my problems are in the neck.
I was left with the impression that there was some sort of diagnostic work up that could be done beyond the MRI and the EMG.
I didn't have a chance to clarify with him at the office visit as to what he meant by that.
He must have had something in the back of his mind that we could further diagnose the problem and then again his thought was to send me specifically to Hopkins or HSS to see either a neuro or ortho and someone that specializes in cervical issues. He was going somewhere with what he was saying but didnt clarify. We then seemed to address what the treatment plans were for me now and then on to the next issue.
He has something in mind just not sure what at the moment.

 
Old 11-03-2012, 05:15 PM   #4
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Re: Pain management doctors

Hi pebble, So glad with all your issues that pump to be done. Do you think that since pain issue will be taken care of first, then he wants you to be seen by the best of the best regarding the following: To ask or see if the neck surgery could be done from another approach. Or, possibly tests on all your other issues i.e. kidney, diabetes, post pancreatic surgery SO that they have the latest info on all your other systems to assess the risks for themselves to see if the risks REALLY kick back surgery out. And, maybe treat your other probs better or new way. What do you think? Like at major cancer hosp here, my dad had the Most unbelievable treatment, several times. Everything was done innovative, they made the impossible possible! Again &again. Like that, except for YOU! Thanks, gmak
P.s. like things you have wrong with your back that you know theres nothing they can do, but @ these places It CAN be done!

Last edited by gmak; 11-03-2012 at 05:20 PM. Reason: ps

 
Old 11-03-2012, 05:26 PM   #5
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Re: Pain management doctors

Gmak:

There was nothing definite as to what we would do after the Morphine pump is implanted.

But we were thinking ahead somewhat of the next step would be to deal with the neck issues; the myelomalcia; the reason for the weakness in the arms etc.
I think he feels I need to be seen by the best of the best. Hospital for Special Surgery is one of the top Orthopedic Hospitals Ive been there and it is a phenomenal hospital

Not sure what he has in mind as to what diagnostic he has in mind for me from his end. I think we will put a plan together and then see if it is warranted for me to be seen at Hopkins or HSS.

The neurosurgeon I have now he has nothing against but the way I took the conversation was that he felt there may be anothe way to treat me then what my neurosurgeon is doing or not doing. Thats why he felt the above 2 hospitals may be the answer for me.

A lot is up in the air at this point. I don't think he was concerned about my other conditions such as the diabets; kidney or pancreactic cancer. He was looking at how to resolve the neck issues.

Time will tell what is in store for me. I dont have a crystal ball so its hard for me to imagine Ive been living this way for 24 years already. Maybe its time for a fresh approach and just maybe someone has the answers that I ve been looking for that has not been resolved for years.

 
Old 11-03-2012, 06:34 PM   #6
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Cool Re: Pain management doctors

Quote:
Originally Posted by pebblebeach3 View Post
Gmak:

There was nothing definite as to what we would do after the Morphine pump is implanted.

But we were thinking ahead somewhat of the next step would be to deal with the neck issues; the myelomalcia; the reason for the weakness in the arms etc.
I think he feels I need to be seen by the best of the best. Hospital for Special Surgery is one of the top Orthopedic Hospitals Ive been there and it is a phenomenal hospital

Not sure what he has in mind as to what diagnostic he has in mind for me from his end. I think we will put a plan together and then see if it is warranted for me to be seen at Hopkins or HSS.

The neurosurgeon I have now he has nothing against but the way I took the conversation was that he felt there may be anothe way to treat me then what my neurosurgeon is
doing or not doing. Thats why he felt the above 2 hospitals may be the answer for me
A lot is up in the air at this point. I don't think he was concerned about my other conditions such as the diabets; kidney or pancreactic cancer. He was looking at how to resolve the neck issues.
Time will tell what is in store for me. I dont have a crystal ball so its hard for me to imagine Ive been living this way for 24 years already. Maybe its time for a fresh approach and just maybe someone has the answers that I ve been looking for that has not been resolved for years.



I hope so! You have been through SO much! Thats what I was trying to say in a nutshell,. New, innovative answers beyond what we can imagine! I think you are on the right path now! God bless you pebble! Thanks, gmak

 
Old 11-04-2012, 10:33 AM   #7
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Re: Pain management doctors

I would find out all you can re: Diagnoses, why your Dr. wants a further "Look-See". Knowledge is key! Don't leave any questions unanswered to your satisfaction!!! I cannot believe why anyone would be so passive in these critical decisions!!!
Also, I recently had a pain pump removed after 6 years. While they do provide an excellent option for chronic pain; there are a lot of drawbacks & cautions that NOBODY informed me of. Including the fact that my pump had an "Urgent Recall" in 2009. One pain mgmt. Dr was refilling mine every month (it was a 3 month refill pump) Ripping me & Medicare off. And Medtronic informed me after 5 years; that they don't advocate the use of Fentanyl in their pumps. Surgical problems such as CSF leaks (I had with pump install & removal) which has to be the most brutal of ALL surgeries I've had!!! As well as many other things I hope your Dr. informs you of.
Remember, this is a foreign object going into you.
I urge anyone with chronic pain; find out all of your options!! Don't think one Dr. can fix all!! For the best information; that totally turned my thinking around @ what I thought I knew in my 20 years living in chronic pain.
Read this book: The Chronic Pain Solution by Dr. Dillard
God Bless!!!

 
Old 11-04-2012, 10:43 AM   #8
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Angry Re: Pain management doctors

I have been following your posts because my hubby has had 2 neck surgeries and many doctor visits and CT/MRI's and very negative responses,IE 'Who let you in here,I don't want to see you. " Etc. He has been told 'no one would see you now, or think of operating on you"....because he had bad surgeon, and so he might be thinking of lawsuit. He has gone to so-called 'pain management clinics' and docs and only gotten narcotics. Once he did get Lidocaine injections. He has remained in pain in neck,and shoulders and numbness/tingling in arms
I have contacted Laser Spine Institute to see if he would be a candidate for minimal invasive surgery there(Tampa,Fl) They called him and spoke to him and got copy of his last CT?MRI and put him on 'hold', I guess. It cost big $$$$'s to have this treatment, but I think it might be worth it to see him out of pain and off the Oxy and Xanax.......He can't sleep and weighs about 135#,and is 6ft tall. It is uncomfortable for him to swallow.due to the plate in his neck. I understand that LSI can 'cleanup' any arthritis, bone spurs, and disc bulges, etc
Hubby appears to have a broken screw and 'misplaced' plate.

 
Old 11-04-2012, 12:12 PM   #9
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Re: Pain management doctors

The Laser Spine Inst. you mentioned…PLEASE look into it!! I remember calling them years ago. Google it-it's a hoax. All they are doing is partial disc dissectomy or known as PDD!!!! Any pain management Dr. can do these. Even my last (a^*hole) Dr. did this in a outpatient basis.
I see he needs surgery-my opinion is- if possible-get a neurosurgeon to do it. I'm not sure where Sunrise, FL is, I'm from Melbourne,FL & my neurosurgeon is Dr. Jonathan Paine. He fixed my back. It just makes sense to see a Neuro.!!! Let me know what how things turn out. God Bless!

 
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Old 11-04-2012, 04:37 PM   #10
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Re: Pain management doctors

Hi again pebble, Just in case, regarding iginfl post about medtronic, I saw from someone in U.K.& then again inU.K. & then in U.S. a pump made by St. Jude. Thought you might want to check it out. Thanks, gmak

 
Old 11-05-2012, 01:54 AM   #11
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Re: Pain management doctors

Assuming all goes well and that the implant is successful, I am not sure which devise the doctor is going to use.

Yes, I've heard of and familiar with Medtronic. I also have heard of St. Jude but outside of the name really don't know anything about the company etc.

It just happens as I was waiting in the exam room I saw a folder that was marked st. Jude. Don't know what was in the folder, but the doctor does use St. Jude for something.

I'll probably try to find out what devise he is going to use in advance.

Before I went to see him, I had a feeling that the pain pump was going to be recommended. so I contacted Medtronic and they sent me some literarture to read as welll as a DVD that was a few minutes long.

I did look up St. Jude but didnt have a chance to look at in any gread detail.

Thanks for the input.

 
Old 11-15-2012, 11:08 AM   #12
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Re: Pain management doctors

Quote:
Originally Posted by pebblebeach3 View Post
Assuming all goes well and that the implant is successful, I am not sure which devise the doctor is going to use.

Yes, I've heard of and familiar with Medtronic. I also have heard of St. Jude but outside of the name really don't know anything about the company etc.

It just happens as I was waiting in the exam room I saw a folder that was marked st. Jude. Don't know what was in the folder, but the doctor does use St. Jude for something.

I'll probably try to find out what devise he is going to use in advance.

Before I went to see him, I had a feeling that the pain pump was going to be recommended. so I contacted Medtronic and they sent me some literature to read as welll as a DVD that was a few minutes long.


I did look up St. Jude but didnt have a chance to look at in any gread detail.

Thanks for the input.
I was re-reading your posts and replies today and I have to ask you; have you tried Fentanyl Patches yet?? I was on them for 2 years before going to the pump. Also, if your Dr. is contemplating surgery to repair and hopefully end your suffering; Why would you need the pain pump???
I am asking this because after I had my pump implanted I developed a CSF leak. After 3 unsuccessful blood patches, a year later I was faced with surgery to repair the leak. (at the L3 level) At that time I reconsidered back
surgery (I was afraid of having it prior because of all the "failed back surgeries you hear about). After consult with my neurosurgeon and the fact that he was going into that area anyways (leak), I decided to go ahead & have the fusion at L4-5. Now that I've weaned off the pump and have virtually no pain, I had the pump removed. Do you see where I'm coming from?? If your going to have surgery to the area causing pain, why would you get the pump??
I hope this helps you in any way! Unfortunately, I made a uninformed bad decision & pray I can help anyone look twice into their possibilities.
God Bless!!!

 
Old 11-15-2012, 11:42 AM   #13
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Re: Pain management doctors

Thank you for the response and yes I understand your post and where you are coming from.

First of all you asked if I was on the Fentanyl Patches. I have been on a number of pain medications over the years. I can't remember them all, but I was on Neurontin and I was on the patches as well.

The problem with the patches at least for me was that I had a reaction to them. I seem to remember that I was breaking out into cold sweats getting light headed. There may have been other issues but those are the 2 that stick out in my mind. I think I was on the patches about 10 years ago or so but would have to double check if that is right.

It seems that while I have been on a number of different medications over the years nothing is really doing a great job for me. Some days I can say I feel like I am climbing the walls with the pain level.

As to the issues that I am having with my spine it is not one specific area. I can literally say that I can feel pain in the cervical; thoracic and lumbar spine and with the symptoms affecting my legs and my arms.

An EMG was done and showed severe nerve damage in the lumbar spine; severe nerve damage in the cervical spine; severe arthritis and peripheral neuropathy.

To my understanding since I have so many levels where there are issues in the spine the Intrathecal Pain Pump wont address all the levels. We are directing the pump to hopefully help the midback/low back region. I was told and think I understood that I may not get 100% relief but if I get a 50% reduction in pain then the pump is a success.

The pump won't help the cerivcal region.

Prior to seeing the Pain Mgmt doctor I have been seeing a neurosurgeon for a number of years who had tried the spinal cord stimulator on me and it was not successful. Thus another treatment that was ruled out for me.

The issue with neck is first of all I have been thru a number of surgeries already 1. for stenosis and 2 for kyphosis which required Harrington Rods fromm C3 to T4 levels. Now I have pain in the cervical region, radiaiting pain at times, weakness in my arms and hands; tingling feeling at times and neurologically he has seen upon examination a decline.

My neurosurgeon and I discussed surgery on my cervical spine and there are issues in doing surgery on that area. First of all his opinion was that in order to get to the area affected it would be a drastic surgery. It would require him to go thru the sternum to get to the area C4/5 to C6/7. So that alone is an issue. But he also concerned about doing surgery on me because of other health issues which would add to the risk factors. I am diabetic so healing does take longer. And I was born with one kidney and the one kidney that I do have I have kidney disease. The kidney is only functioning at about 30%. So there are number issues to be considered before surgery would even be attempted or considered.

I have tried getting opinions from other ortho/neurosurgeons and there are those doctors that wont even see me because of my history etc. They are afraid to touch me for obvious reason.

So here I am faced with the Pump. After the pump is in and assuming it works for the mid/low back region, my Pain doctor planned on addressing the cerivical issue and the weakness etc in the arms. We did not get into a lengthy conversation as of yet and I am not sure what he has in mind. But one thing that crossed his mind is that being a complex case as it is I may be limited on who is qualified to see me. His thoughts were that I should be seen at John Hopkins Medical in Baltimore Maryland or the Hospital for Special Surgery in NYC. Hospital for Special Surgery did one of my surgeries in 1997 and has been continually ranked one of the top orthopedic hospitals in the country. It is a phenomenal hospital. Whether I am to be seen there is still to be seen since I don't know what was in my doctors mind as to further evaluation for me and what his thoughts were as to what the real issues are and how to correct them or at least to manage them.

Hope this clarifies what is going on and why I am going the route that I am.

Thanks for your input and thanks for listening.

Allan

 
Old 11-15-2012, 07:58 PM   #14
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Re: Pain management doctors

My heart goes out to you…I am so sorry that you are having to deal with all of these problems. It is humbling to say the least.

The pain pump would definitely help with a lot of your pain and I was told by my pain mgmt. doc that there is a newer pump that gives you more control via remote control. Medtronic I believe makes it. Best of everything to you & I hope you get the relief you so much deserve. God Bless You!!!

Last edited by Administrator; 12-19-2012 at 11:06 AM.

 
Old 11-16-2012, 07:31 AM   #15
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Re: Pain management doctors

\The issue that I have is that while I have out of net work benefits, it comes with extra financial burdens. More out of pocket etc. And right now its tough financially to see someone out of network, but will keep his name on file just in case. Thanks for the input.

Last edited by Administrator; 12-19-2012 at 11:07 AM.

 
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