New Neurosurgeon, Going back to Pain Dr. too!

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misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 11/8/2011 5:21 AM (GMT -6)   
Hey all, it's been a little while since I posted on here. I've been kinda busy lately and feeling, well, honestly, kinda cruddy. mad

I finally know why I have herniated disks and degenerative spine changes, its because of my scoliosis that I was born with and has gotten worse with age. My orthopedic surgeon was able to tell me that, but also said that surgery wasn't really something he could recommend. So now I am off to see a Neurosurgeon who specializes in Spinal Surgery on patients with deformities. He'll be able to tell me what, if any procedure can be done for me. If he doesn't recommend anything, then I guess I will have to rely on pain medications or other treatments...for, well, I guess the rest of my life. lol!

My Tramadol isn't helping at all, so my primary doctor is sending me back to my pain management doctor because under state law he can't prescribe anything more potent than Hydrocodone--which I tried and had even less help from than the Tramadol. I had only really gotten epidural injections from the PM doctor before, but he's very nice and understanding so I hope he has some advice/treatment for me to relieve this pain!!

I've applied for SSDI/SSI. I'm in the process of filling out function reports and talking with my doctors about them. It was a hard decision to make, but its been a year since I've been unable to work and this seems like a life-long condition...which may get worse, not better. However, I am trying not to let it overly depress me and I am trying to focus on feeling better--even just a little bit. I am hoping to get some pain relief. I don't expect to go back to how I was before this all happened...but I do want to at least improve my quality of life a little bit so I can manage day-to-day.

I see the neurosurgeon on Wednesday, so I hope it works out well!

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 11/8/2011 11:41 AM (GMT -6)   
Misterkatamari,

I have scoliosis as well and recently have been getting trigger point injections. I had an epidural last year, which did not help me, but the trigger point injections are reducing my pain, at least temporarily. All through my left side, especially the trapizius and rhomboid muscles, I have some focused areas of pain that feel like burning spears.

The doctor injects into those points. I had one set of injections about 2 weeks ago and in one spot in particular -- the very worst -- the injections helped a lot. I went back yesterday for more injections. I was very sore last night, but this morning, I'm in less pain than usual.

If your scoli causes muscles to spasm and focused pain points, give the trigger point injections a try. At least for me, they're helping.

On the BT meds, you might want to talk to your doctor about increasing your doses. After 6 years on hydrocodone, I find that 10mg barely touches the pain, but 15mg makes a difference. 7.5mg of oxycodone also helps, where 5mg doesn't.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/8/2011 12:08 PM (GMT -6)   
hello mister
so sorry you are facing a long term illness with pain
what is the degree of your scoliosis
should you have perhaps had a repair done when you were a teen or
was it only discovered at a later age
i hope you get some answers from the neurosurgeon
please let us know how you make out
if these are the only pain meds you have tried i believe there are others you can try
have you tried a muscle relaxant with your pain med to see if that helps
i wish you much luck applying for your disability
i know it is a tough thing to swallow
i have been on disability for three years now and it still hurts so much that i had
to give up my paediatric nursing job, it is something i truely miss
 
Take care
suzane

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 11/8/2011 1:31 PM (GMT -6)   
Hi Mister, I do hope your appt goes well with the neurosurgeon. I think this is probably something that has been long overdo for you. Granted you got some answers from the orthopod but I think this neurosurgeon appt is a good choice for you. It will be interesting to see what he says.

Try not to let it get you down about filing for SSD. It can be a bitter pill to swallow, one many of us have had to swallow. Be sure to keep a copy of everything you get or send to SSD because at some point you may need to go back and look at those answers, in fact make yourself a file up just for SSD.

If you see the depression is trying to really take a hold, then by all means go to your PCP and let him/her know what is going on. We have discussed it many times here before, depression and CP go hand in hand for some reason. Sometimes by going on medication for depression it actually helps decrease the pain sometimes.

I use to get trigger point injections all the time for my neck & back. That was the only way I could continue to work for many years because muscles relaxers alone would not get the spasms under control. By the time my PM dr got finished starting at the base of my head all the way down, I felt like a pin cushion, lol. There were times the spasms were so bad he could not get the needle into the spot, that smarted let me tell you.

I can't remember much about your PM dr, by chance is he one that just does injections or procedures, not much on rxing pain meds? if he only does this you may need to be referred to one that does write scripts in addition to the above.

Please let us know how your appt goes on Wednesday. I do hope it goes well for you. Take care.
Moderator Chronic Pain Forum

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/8/2011 2:11 PM (GMT -6)   
Hi, I think when a cp patient has to worry about finances along with the mindnumbing pain we deal with every day, I think this added stress also adds to the pain.  I dont know what state you are in but in Maryland where I am from we have many lawyers who only do SSI or SSD, I am not talking about the ambulance chasing lawyers who are on tv advertising how much they would love to help us.
 
No after two years of being turned down, I found a lawyer in the back of a newsletter that I always received and was very trustful of.  This turned out to be the best thing I did, that was more than 12 years ago.  Now my pain has increased as I age, but thats what happen in this circle of life.  The one thing I dont worry about (at least not 24-7 is money), I need to add that I live with my youngest daughter and her fiance, so I am well taken care of and count my blessing each and every day. 
 
I wish you all the good luck and whatever else, that gets you what you should not have to fight for.
 
Take care, good luck
 
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 11/8/2011 2:39 PM (GMT -6)   
Thanks everyone!!

Basically, my scoliosis was diagnosed when I was around 14 or so. I was told it was mild and didn't require any type of treatment. As of my last MRI, I think the degree was at 30 at the 'worst' part of the curvature. So it isn't something severe enough to be surgically treated on its own, it isn't like some people have with scoliosis where it is actually messing with their rib cage or organ placement and things like that. Its just that I guess I may have other underlying problems, so the curvature is just causing my spine to experience degenerative changes unusual for someone my age--even with scoliosis.

And yes, I have tried muscle relaxers. They help the scoliosis pain, but not the pain from the herniated disk. I have had success in treating the chronic scoliosis pain via conservative measures. Even the Tramadol I take helps. However, the problem isn't so much the pain from the scoliosis now as much as the problems it has caused the rest of my spine. So I now have 2 herniated disks, one of which is impinging a nerve root, and I also have 2 or 3 bulging disks of lower levels. This big herniated just occurred late December of last year, s I never had the pain from it before. Now its an every day thing, due to the nerve irritation or whatever.

Also, what exactly is a trigger point injection? I have had something that sounds like that done before, but it was just for my scoliosis pain itself. They drew a circle on me and injected it to where it hurt the most. It sorta helped short term, but I don't think it is probably something that would help with the herniated disk pain? Also my PM doctor apparently does do long term medication treatment, so that is why I am going back to see him. I was confused at first and thought maybe he just did epidurals, but I guess that isn't the case. Now that I 'failed' all my injections and have taken this Tramadol, maybe he will try something stronger or different medication wise.

And yes, financial stuff is an awful thing to deal with. People with chronic, disabling pain sometimes lose their jobs and homes or more in addition to having to deal with their conditions. It's really an awful thing, and I am thankfully living with my father right now--but I need to be able to support myself too, as we're having financial issues as much as anyone else today--just thankfully we still have our home and income. So it would really help if I could pay for myself, at least, and pitch in on bills and self care.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/8/2011 8:22 PM (GMT -6)   
A trigger point injection is where they go in and target the partialar nerve that
the pain seems to be coming from and inject into it, but they pick a nerve which to me
can be if/fy at best...these injections are done as an insurance proto call and
as a diagnositic tool for the doctor to see if they can provide relief...
(sorry about my spelling my RA is flairing today and I do my best...)
After injections they try other things such as radio frequency ablations...
and so on...Hope this info helps and many well wishes in hopes you can get a low pain day soon...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 11/9/2011 9:13 AM (GMT -6)   
I have scoli right around your degree -- but it never bothered me until my late 30's... and for the past 5 years it has been progressing.

I recently went back to an MD to discuss injection options. I didn't get relief from an epidural. The MD wanted to do a discogram, but I refused and decided to look into trigger point injections.

Throughout my back, I have various places where it feels like I am being stabbed with a hot spear. They're not near the spine, but mostly in the rhomboid muscle between the shoulder blade and the spine. Presumably, their cause is nerve impingement or muscle compensation for the (concave side) curve. So, I've had two rounds now where the doctor injects into those specific points where I get a lot of pain... not in or near the spine, but in the muscles in spasm.

I have various other issues from the scoliosis, and I didn't expect the trigger points to solve them all, but my idea was to try to hit the places causing me the most pain, and at least moderate them.

If your worst pain is spinal, then these injections may not be the best strategy. I have one herniated disk, c4/c5 if I recall. One doctor recommended using an rf probe to enter the disk, heat it up to congeal the leaking fluid. But it sounded too scary for me. Maybe it is an option for you?
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 11/9/2011 4:44 PM (GMT -6)   
My trigger point injections were not a big deal at all, a little burning when stuck initially. The drs always would feel around on my neck & back & shoulders and find the hard muscle spasms, they always said it was like hitting concrete. I had a lot of muscle spasms going on. One morning he injected 17 different areas and when finished I always went on to work.

I have had these done by different drs and they have always done them the same way. Its sure worth trying.
Moderator Chronic Pain Forum

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 11/9/2011 5:44 PM (GMT -6)   
Well, I went to my appointment! ...

I'm pretty upset, actually. See, my Orthopedic Surgeon referred me to this guy, right? He said specifically that he was referring me there because of my scoliosis. Anyhow, I went to my appointment today and I was on time and everything was fine. The doctor came in quickly, looked at my MRIs and my chart, checked my leg raise/strength, and then said that he was going to refer me to his friend who is a scoliosis specialist. Meaning I just WASTED A TRIP. :)

I am so annoyed and angry at the Orthopedic Surgeon's office, they are completely incapable stooges. When I first went there, they accidentally set the appointment up at a different office by mistake, then they cancelled on me two times in a row--and then when I finally see them, they send me to see the wrong specialist? It's ridiculous.

To put this into context, I just had to have my father--who is 67--drive me 3 hours outside of Pittsburgh, PA just so I could have a--literally--five minute appointment and be told that I need to see a different doctor in the same city and that they will call me when they can set it up. :) It'll probably be just in time for snowfall too! Bet you I'll go all the way back there to see this new guy, and he'll just tell me that there isn't anything he can really do. I'm sick of it.

I am SO glad I applied for SSDI/SSI before this. I was thinking 'maybe I should wait again and see what this surgeon says'. Thank god I didn't, or I would be truly hacked off. I really feel like calling the referring office and giving them my two cents, but it wouldn't do anything but anger someone else so its pointless. That office is truly pathetic, though. The doctors and care are fine, but if I can find a review on rate my Doctor or something--I am giving them a pretty nasty score in at least one category. No one should be given this type of run around and just plain awful service. I have been to many doctor offices in my life and NONE have been this inept. It truly amazes me.

On a related note, driving all that way has taken a toll on me even though I wasn't the one driving. My left side hurts so much, and the Tramadol isn't touching it at all. I'm going to call my PCP tomorrow and make sure they are setting me up with an appointment to see Pain Management, because I just cannot take this situation right now. It's far beyond manageable at this point.

Had to edit a couple of your words due to the language, we have to remember this is a family oriented site and we do not know the ages of people reading these posts, the words I edited out are against the forum rules. Thanks.

:P

Post Edited By Moderator (straydog) : 11/11/2011 12:40:58 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 11/11/2011 2:45 AM (GMT -6)   
Oh Mister, you have every right in the world to be upset. Why is it a drs office can really mess something like this up and act like its no big deal when you bring it to their attention, which I really think you should. If it were me I would be making that phone call and letting them know they dropped the ball on the appt.

I hope you do not have to wait long to see the PM dr. Let us know when that is scheduled. Take care.
Moderator Chronic Pain Forum

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 11/11/2011 8:17 AM (GMT -6)   
Mister, I'm sorry you had to go through that stuff up with the doctor's office. How is your pain now? I hope you can find some way of settling things down and that everything happens quickly with the PM appointment

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio
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