My Neurosurgeon Apt Yesterday

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/30/2011 1:34 PM (GMT -6)   
Well I finally have answers from the Dr who did my fusion (L5-S1) and, after a thorough review of all films/discs and a series of x-rays he sent me for immediately, it looks like we are "almost" certain of non-fusion even this far out.  My TLIF was 3/2009.  There is more bone growth than before, but still no solid mass (in the correct place, that is).  I have pretty severe damage in the disc above and have damaged discs/bones along almost all of the spine.  He has given me three options at this point and a great deal of literature to review before I make any decisions.  First is to start with a myleogram and then onto surgery to clean up the last fusion and fuse the level above.  Second is an SCS (from one of three companies he uses on a regular basis).  He says each person is different and the machines from different companies work differently on them.
 
Should I (we) decide on SCS, he will do the trial and the procedure himself (which makes me feel better because I trust him despite the non-fusion).  He is a very good and very well known Neurosurgeon and I know he will be more cautions than a local small-town Dr just trying to sell a system.  He also requires at least 50% reduction in pain during the trial before he will even consider placement of the permanent SCS.  He says it is pretty easy to place them, but very hard to remove them and that anything less than 50% pain reduction is not reasonable in his professsional opinion.
 
The third option is to continue with the RFA's and PM as I am doing now (though I am considering a change in PM practices).  I'm just not comfortable with the flip/flop attitude and strange office interworkings going on there.  I will still get the RFA done on the 20th of Sept before I make any additional decisions.  It will buy me time to think and to research.
 
This NS I saw was wonderful about me having gone to someone else a year ago for determination of why I am still in pain.  He even agreed completely with the reports after he reviewed the CT's and MRI discs.  He actually instructed me to go home and rest and then do some research on the internet about the SCS units and how people really feel about them.  I was able to tell him about HW and how I use it to help me in situations like this because the people on HW are here to get well and to help each other.  He was honestly surprised that I was even familiar with the SCS process (including psychological eval), but I explained that several of our members have tried SCS for pain control.
 
We did discuss a pain pump because of the damage to my stomach,  but he is not in support of something like that because he is concerned about the physicians who do the refills and infections that may be caused by refilling the units so often.  He also feels that pain control is not often eliminated completely by the pain pump and that breakthrough meds are often necessary.
 
So now I have some decisions to make.  I know I can search for SCS info and see what is on HW.  I have done a little of that, but I'd still love to hear opinions of others who have tried them or the other options I have been given.
 
Thanks my HW family for reading and for any responses you feel you can give.  I know the decision is mine, but I also know many of you have already been down this road before.
 
eyes  
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 8/30/2011 1:56 PM (GMT -6)   
Retired Mom.
I am encouraged by what your neurosurgeon had to say, his consideration of all of the options available and his reasonings for thinking they may be worthy of consideration or not in your particular case.
He is one of the few surgeons that I am hearing about these days who actually stick to the standard for the placement of scs units, which is at least 50% reduction in pain levels. I am hearing more and more of doctors who are placing these units in patients who are achieving no more than 10% reductions and calling them successful trials....which is not what the standards call for. If I may make a suggestion, check all around for scs success rates and complications- which will lead you to many other forums and reports. I did the same when I was considering it and it allowed me to have lots of information which I could then ask about with the representatives from the companies or the surgeon themselves. Also ask about pain medication options for after placement- some doctors refuse to give pain medications after the placement of one of these units, believing that the scs should take care of all of the pain.....they don't.
As for the myelogram- I've had at least three- and I believe that you should have it done, whether or not you choose surgery to make sure that there is not any severe nerve impingement that is going to need surgery . It will give you more information than you currently have, even with CT scans, xrays and MRI's....
The RFA's , continuing with those is also a good idea , since it will give you more time to research and at the same time, bring you some reduction in pain levels.
I wish you the best, while you are trying to figure out what option is the best one for you.....it's not an easy decision. I know.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 8/31/2011 9:48 AM (GMT -6)   
Retired Mom,
I also have fusion that didn't relieve pain, but it did help with structure. When I(we) were considering a scs unit, my ns told me the same thing, but suggested that I see another ns for a second opinion. If you decide to try the scs units, the temp unit will make your decision for you. Good luck!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16761
   Posted 8/31/2011 10:48 AM (GMT -6)   
Good morning RM, I am so glad that you went back to this dr. For the first time in a very long time, I detect a calm in you that I haven't seen in a very long time. I could be imaging this, but it seems like in the past year or so every time you have been to the dr for whatever reason, you left being upset (for very good reasons)and really unhappy. You have had a long run of some really goofy acting drs. i seems like.

I think you had a really good appt with your surgeon and he has given you some really good options to think about and you have your homework cut out for you.

As far as the SCS goes, Mrs123 is correct, 50% pain reduction or else its considered a failure in a trial, do not settle for anything less. And you should still have access to meds for BT even with an SCS unit. We have had some members on here in the past that their dr refused to give them meds for BT pain after the stim was put in and thats just wrong. Too many drs think those things fix it all and that is just not true. So, keep this in mind if you decide for an SCS unit.

What about asking this neuro if he knows of any good PM drs? Is that an option?

I know most people really cringe at the thought of having a myelogram, however, it is like a road map of your back according to my neuro. He says its the only test that shows what the nerves are really doing. A friend of mine had a mylo done one morning and the goofy thing was out shopping that afternoon, She called me and told me where she was, I said go home and lay down and drink all the fluids you can to flush the contrast.

You sure do have some work a head of you. Take care.
Moderator Chronic Pain Forum

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/31/2011 2:07 PM (GMT -6)   

 

         Hello retiredmom!

               I wanted to stop by and say hello, and throw a little support your way too!

      Not much to add, and Sandi...and Stray have given you some very good points to ponder while your weighing your options.

         Take care,

     SE wink


Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 8/31/2011 3:27 PM (GMT -6)   
RetiredMom...I do not have any experience with any of the things you are dealing with. So I can't offer any suggestions, but I did want to say that it does sound like you have some serious things to think about!

I hope that you can get some good advise here (it looks like you already have) and can make the best decision for you. I myself wouldn't rush into anything as I am sure you won't either! Good luck my friend and take care.

Keep us posted!
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Undetermined Auto-Immune Dysfunction (probable MCTD, sero-negative RA and ?), Trigger finger, Carpal Tunnel, Cubital Tunnel, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/31/2011 5:01 PM (GMT -6)   
Thank you all to my wonderful friends! I just re-read my post and agree about the calmness Straydog. I hadn't noticed it before, but you are very right. Sometimes just getting an honest to goodness answer is more important than anything else. I also like that I get to participate in my healthcare rather than just accepting whatever is thrown at me.

I have been working today on clearing up projects at home (paperwork things) and have a few more days of that ahead. I'm going to start the search for a new PM sometime in the near future. I really like the idea of asking the NS who he might recommend, but I don't have the option of driving where he is located unless they are willing to do the three month apt thing that many others here do.

I found it odd this week that a new patient for my PM is going to be given his meds with refill scripts every three months, but I have to go in monthly.....just to pick up the script. Neither can fill it early, so what's the difference? It's just another one of those quirky office things that makes me feel strange about seeing them. So, I'm off to find out who else is out there and who might be a good fit for my conditions. It might take a while, but the right one will come along. :)
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 9/1/2011 4:33 AM (GMT -6)   
Hi Retired Mom I'm glad to hear that you appointment went well. It does sound like you have some decisions to make. You do sound calmer than I've saw you in a long time. I know that has to feel better. I wish you good luck with your decisions.

I also need to apologize that I'm one of the ones that sent you forwarded emails. I forgot. I'm sorry. My memory is so short these days. It's so frustrating. :(

Take care. I hope you're having a low pain night.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 9/1/2011 5:04 AM (GMT -6)   
Oh Loretta,

Please don't stop sending me emails....just not forwarded ones ;( My mother does the same thing and I remind her over and over. She'll say, well I only sent you the "good" ones. It's just that I have such a problem with viruses. They, my mother and step-father, bring me their machines when they get a virus and I have to go through and do all the work. I really don't want to sound like some psycho crazy about it and I love getting personal messages (and sending them), but I'm hving to delete them on my phone to get rid of the viruses before they hit my computer. Then I forget to send a little note back.

None the less, it's good to hear from you my friend. I appreciate your support very much and hope you are having a very low pain day!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16761
   Posted 9/1/2011 2:45 PM (GMT -6)   
Well, I do think with a little bit of work you can probably find a good fit for a PM dr in your area. I don't blame you a bit for wanting to seek services else where, just from what you have posted here about this place is enough to make a person look for a new one. Did you say a new patient being seen every 3 months with 3 months worth of scripts, oh yes, I would be done there.

It still may worth a call to the neurosurgeons office to see if he may know of any good PM drs in your area. One thing I learned when I worked was the grapevine the drs had reached long and far.

It really does make a difference like you said when you are allowed to participate in your care and have a dr give you straight talk.

Keep us posted on how you are coming along with things.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 9/1/2011 10:45 PM (GMT -6)   
Hi RetiredMom I will continue to sending you emails, but when are you going to return them? smilewinkgrin

I know you have probably been busy with doctor's appointments and x-rays, etc.

I have been having a pain flare for a couple of weeks I guess now. Today there was some rain around the area and my pain has been pretty bad today.

Take care. I hope you're having a low pain evening.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 9/2/2011 7:38 AM (GMT -6)   
Hi Loretta,

I'm not getting them. I'll go into my webmail service and see if it is catching them as spam.

I don't normally use that because it pulls all my emails from my phone.

I'm sorry!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 7:08 PM (GMT -6)
There are a total of 3,004,449 posts in 329,145 threads.
View Active Threads


Who's Online
This forum has 161739 registered members. Please welcome our newest member, pinky;spoorback.
212 Guest(s), 10 Registered Member(s) are currently online.  Details
ANB, Michael_T, Admin, Carolina_Girl, annie42, 61Impala, Blue Roads, InTheShop, straydog, Shayanv