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View Full Version : Update on Yesterday's MRI and Dr.'s Visit



rohrer01
04-09-2010, 08:15 AM
Hello all you who were following the "chiropractic" thread. I had my appointments yesterday and saw two phsicians following the MRI. Very interesting indeed.

I have mild degeneration of the L5-S1 disk, with slight bulging on the spinal chord and the left nerve root.

I saw the neurosurgeon first. He felt that the MRI looked GREAT, especially considering my age. He thought that there was not enough degeneration there to be causing me symptoms and pretty much reiterated that he feels that I need the spinal fusion. He feels that a correction of my upper spine will give me significant pain relief in both the upper and lower spine.

Then I saw the pain specialist (I don't even know what their official title is...). He interpreted the MRI very differently. He felt that there was enough disk protrusion to cause my pain symptoms. He also felt that the left nerve root was crowded, thus causing the pain down my leg that could come and go periodically. He did find that I have weakness in my left leg. He also looked at a bunch of old and not so old bloodwork that I have had done and felt that there may be some endocrine problem going on, so ran further tests. He scheduled me for epidural injections of the lower spine next week, which I am totally fine with. He also wants to try the intrathecal catheterization at about the T7 level. This will allow him to actually bathe the spinal chord in either morphine or phentanyl, or whatever drug works to get rid of the pain. He said it would have a lot more effectiveness with nearly no side effects. Although, drug would still get into my system and I would still have that to worry about if I were to get pregnant. This doctor felt that having spinal fusion would only INCREASE my pain. He did say, however, that some spine surgeons will allow a catheter, such as this, to remain in the spinal canal and do the corrective surgery with it in place, and some will not.
One thing that bothered me is that he has only ever had one other scoliosis patient, and she was 16 and already had the scoliosis surgery. He was not able to get past the hardware to get the catheter in high enough to give her pain relief in her upper spine, just her lower spine. So she still has to take oral medication to control the pain. I basically told him that my goal was to be medication free. He said that it was an honorable goal, but was basically unlikely to happen do to the pathology of my spine.

My one big concern is that, he does not have any experience in inserting this catheter into a scoliotic spine. I'm sure it's not as easy as it would be for a straight spine and it is a two or three day stay in the hospital while they try to figure out what works. So his lack of experience with someone like me makes me uneasy. Also, it is a "patch" fix. My scoliosis is progressing and I will likely need surgery within the next couple of years anyway, so...??? He also wants to send me to PT (I said I would blow a gasket if he suggested this, as it has had little effect in the past). I brought up my concerns that all they have ever done for me is give me exercises and when I master them, they give me more, and more, and more and increase repititions, etc... You get the drift. I said I have a life to live and I walk over a mile every day. Then he looked at me sheepishly and said he just wanted them to give me massage and heat therapy to break up some of those muscle spasms in my neck and upper back. I felt a little bad, although I wasn't rude to him, and I agreed that it would most likely work at giving me at least temporary pain relief.:o

My other thought on this is that I think it would be great if he could get the catheter in place, then have the surgery. That way, if the surgery doesn't give the desired pain relief, I will have medication on board at the level of the spine and won't be bound to oral meds or patches that have to travel through the whole body. If the surgery does work, the catheter could be left in place and as I age, I may need it later (if the catheter hardware doesn't deteriorate). Or the catheter could be removed altogether. It's not permanent unless you want it to be.

Is there anyone with experience with anything like this? The intrathecal, epidural, surgery, or combination therapies? I would love to hear experiences or advice even if you haven't had it. Thanks in advance. You are ALL a great bunch to talk to. And I mean that!:p

rohrer01
04-09-2010, 09:04 PM
I know that this is kind of a mixed topic of surgical/non-surgical, so didn't really know where to post it. Does no one have any experience with any of these methods?

dailystrength
04-09-2010, 09:56 PM
I have no experience with this whatsoever, but I think your hunch is right in wondering about his experience level... and the lack of desired result with the only other scoliotic girl. I admire your goal to be medication free. I have pretty much succeeded in that, but I have to move around and stretch quite often, and be very careful about how I bend, clean, etc. I am limited but I am medication free. I know when I hurt and I try to avoid that. So yes, a patch over pain to me is not always the answer, as pain is a signal to do something different. Massage does help, so does heating pad, warm soak, tens unit, laying on floor, not sitting on soft sofas, etc. Please if you can get the book I've recommended, "Curves, Twists, and Bends"- some of us have found it helpful. She does not make you "exercise" but merely find helpful poses that work on the rotation aspect. Stretches, relaxation, not repetition and strain. I stopped doing my other PT exercises b/c I wondered if it was only reinforcing bad habits. Those in "Curves..." are so gentle. I did them the first time and was actually pain free after completing a pose - it was amazing. I hope you can find some relief soon.

rohrer01
04-09-2010, 11:42 PM
Thank you! I will look into getting the book. It seems that I have had success with heat, ice, and SOFT cushy places to sit and lay. I love my exercise ball. I got two of them when my daughter was pregnant and we used to sit on them. It felt so good to sit on and stretch, but now I'm afraid it will pop, like it did to the other poor woman (don't remember who that was). I was always afraid of that at the time anyways because the pin that held the air in was sharp. I see the surgeon before the intrathecal thing is going to even be cosidered. I'm not too worried about the epidural. I know it's a bandaid, but if it works for that problem, I'm fine with that. My chiropractor could never get my lower spine to move, even though she said she felt it move, I never felt anything or got any relief.

Maybe someone else has tried some of these methods, and maybe not. I'm not sure what I'll do. I think it depends a lot on what the surgeon has to say.
Have a great evening!

jrnyc
04-10-2010, 04:52 AM
Hi Rohr
i go to my pain doctor every month...i get botox shots in thoracic every 3-4 months...it works beautifully...no more muscle spasms...
lumbar is much more difficult for me...botox doesnt work there...i've had epidurals, facet blocks, nerve ablation, sacroiliac injections...and a few more i forgot...the sacroiliac injections worked the best...but all were temporary...some only helped for less than a month! i've never had that intracathecal thing...wouldnt want a catheter to remain in me...can they do it and remove it the same day?

BUT....my pain doctor has treated lots of scoli people...i dont know if i'd go with a guy who hasnt...do you have any choices in this with your insurance...can you go to another town near you if need be?

it might be worth trying pain management, even if you go with the surgery...

where are your curves located? where do they want to fuse you to? is it only thoracic they want to fuse?

best of luck
jess

rohrer01
04-10-2010, 01:02 PM
I have to go where my insurance makes me go. I am nervous about a doctor with no scoliosis experience, believe me! As far as the intrathecal thing goes, what they do is put you in the hospital and take away ALL your pain meds. Then they insert the catheter, for me at the T7 level. They try different doses of morphine or fentanyl or other medications that actually bathe the spinal chord until they find a medication and dose that gets rid of the pain. They then remove everything and have you come back for surgery. At the time of surgery they put the catheter back in (I'm pretty sure they remove it after the test, haven't watched the video yet) and connect it to a pump with the appropriate medication in it. This pump is placed somewhere in the abdomen and preset to release the right amount of medication. As far as when the meds run out, I think they can just insert more into the pump through a needle or something. Like I said I haven't watched the video, so not quite sure on that part. If after a while you don't want it for whatever reason, the whole thing is reversible. He said by doing this I will get a LOT less medication with greater pain control and virtually little or no medication side effects. He said also that some scoli doctors will leave the catheter in when they do the surgery, so you can still have it after surgery. If I have surgery first, then there will be no way he could get the catheter past the hardware.

I don't mind having all that internal stuff going on, so that I don't have to wear patches and I get automatic pain relief. But the things that I am always concerned about are 1. infection into the spine 2. it's mechanical and things break. (what if I accidentally get an overdose?) 3. I'm still getting medication into my system, so if I get pregnant, the baby would still be getting some of the meds.

My doctor will have to fuse from at least T2 (that's the lowest he said he could start) to L1. So it's a pretty large fusion. I have a 46* curve that runs from T2 to T6 (if I'm remembering my medical records right) but have also developed a secondary thoracic curve measuring 28*. Thus the need to go all the way to the L-spine.

As far as the epidural injection, my spine, according to the neurosurgeon, looks great and there is mild degeneration and only slight bulging of the L5-S1 disk and very little to the left nerve root. The pain doc thinks it is significant enough to cause the symptoms I am having. I do have some weakness in my left leg. Who do I believe? I can see that the disk looks black on the MRI and I can see the slight protrusions. It's just that the neuro doc really thinks the scoli surgery will give me more lower back relief. And IF I do get the epidural shots, they only last for a short time. Do I keep going back until the disk is completely shot and I need fusion there? How many years will that take?

Sorry if it seem lik I'm rambling, but I wasn't expecting to get opposing opinions and now have to make difficult decisions pretty much on my own.:eek: I am going to talk to my scoli surgeon and see what he says before I decide on the intrathecal thing.

Thanks for "listening"
;)

rohrer01
04-14-2010, 11:53 PM
I had a steroid epidural injection yesterday. I thought it was going to really hurt! My upper back, ribs, and neck were hurting me so badly that day that it actually brought tears to my eyes. I barely even noticed the lidocaine injection. Peace of cake. If anyone is worried about having an epidural, my experience was great. I'm actually feeling some results even though I am still sore. I was able to bend over the sink to wash my face and stand back up again without pain. I was SOOOO surprized!! It said that it would take 3 to 4 days before it started working.
:D

jrnyc
04-15-2010, 02:30 AM
Hi Rohr
saw my scoli surgeon monday...i need fusion L4-S1 & T11-sacrum with pelvic fixation......but he called my upper thoracic 42 degree curve MILD...so i dont know what a 28 degree curve necessitates as far as extending any fusion! 28 sounds kinda small to me...

are you thinking of getting pregnant now while in such pain? is that why you want a catheter inserted? are the meds they use in that catheter safe for pregnancy?...whether they leave it in or not? (yes, medication can be repleaced with any pump...i've got experience with catheters and pumps from lyme disease treatment)

best regards...
jess

rohrer01
04-15-2010, 04:08 AM
Jess, sorry to hear you need the fusion. But you knew you have needed it for some time, right? Does this mean that he will not correct your thoracic curve because it is only 42*? If it hurts, it hurts! AND if you are having the rest done why not get it all over with. 42* is not MILD. It is moderate - severe.
Did you find a doctor that can do the less invasive surgery (that was you, right?) Are you having it done, and where? May I ask? I'm hoping everything goes well for you whatever you decide. These are not easy decisions!

My major curve is 46* and the lesser curve is 28*. I have had a total of 12* progression in the last 5 years if you total both curves. I went from 40* upper thoracic and 22* mid-thoracic to where I am. He would fix both because I used to barely have a lesser curve. As an adolescent and young adult it was only in the teens. Five years ago, my dr. said he would fix my 40* curve if it was causing severe pain, but mentioned nothing about the lower curve being fixed. Now he wants to do at the lowest T2 to L1. Back then I was having major flares, but not like this one. I'm on more than twice the pain meds now.

No, I don't want to get pregnant with drugs in my system. I'm thinking of the intrathecal thing because it delivers much less. The drugs are also not abortifacient and I could be weaned off before the pregnancy progressed enough to have an addicted baby. The pain doctor is insistant that this is the only way to get my pain under control with the least side effects. He may be right. BUT my scoli is progressive and I just want to get it fixed while I'm still young enough. I don't want to have a toddler running around and then have to get surgery. I know what it is like putting a baby/toddler into and out of a car seat, it is EXCRUCIATING to say the least (my daughter had a baby and they live with us. He is 19 months old now.) I don't also want to wait until I'm in my 50's or 60's, because I don't know if I will feel strong enough to go through such a major operation. I am not a person with a strong constitution. But then again, maybe I underestimate myself. :)

I think my pain doctor is also thinking of using the intrathecal for my lower spine, eventually. I have mild degeneration of the L5 - S1 disk, but it is pinching the nerve root and causing pain and numbness to run down my leg.

I'm just not sure what my scoliosis surgeon is going to say about the pump. He said that I am in the surgical grey area at 46* (remember the magic number 50?) and he would want to see at least an 80% improvement in my pain from the surgery. How can anyone know for sure? Some people get better and some get worse. How much pain medicine do I have to be on? I already feel like a total druggy. The last time I had a flare nearly this bad I was on the heavy narcotics for at least two years constant and have been on them intermittently since.

I think it is because my major curve, although not so huge, is tight (that's my own opinion). It covers a span of only four vertebrae, I think. I could see that it wouldn't be that major if it covered a span of 7 or 8 vertebrae, but it is so high and tight. I guess I'm not quite sure what I am going to do. But for sure, I don't want to try for a baby in this condition, so I need to keep my ducks in order. I have three beautiful children from a previous marriage. It's just that my husband and I have had four miscarriages together and it makes me feel determined to give him a child. He only ever had one child from a bad marriage. I know I'm of "advanced maternal age", but it seems that many people are having babies in their 40's now. I just want to make sure I'm healthy enough to give the child a good life. I also want to get this over with (my back issues) and hope that I am still young enough to give it a go. If not, that's okay. I'm just dealing with issues of life not quite going the way I want them to right now. I'm MAD at my scoliosis for getting in the way!

Thank you so much for the concern! Is your lyme's disease better? I've heard it can last a lifetime. Do you still suffer from pain from it? I'm so sorry that this has to be added to the scoliosis problem as well. I wish you the best in your future decisions and keep us posted on yourself. Thanks for listening!((((HUGS)))) Sorry if I'm rambling or not making sense, It's almost 4am and I have not been able to fall asleep for whatever reason tonight. ARGHH

jrnyc
04-15-2010, 09:51 AM
Hey Rohr
you need some sleep!!!! my sympathies...i am often up at that hour...but dont like to be!

my thoracic is helped by the botox...(which i think might help your "tight" scoli area...at least would be worth a try with a cooperative doctor)...it doesnt hurt the way the lumbar does...nor does it cause disability the way my lumbar does...so it is not a big concern to me..

thanks for the kind words about lyme...the arthritis from it lasts forever....and is in my spine, too....

i just wish you could find a pain doctor with enuf knowledge and open mindedness to consider any and all approaches, not just stick to this one intracathecal thing...lots of us on forum have large painful curves...many much larger than mine...and i havent heard of a pain doctor pushing a treatment this way!!

hope you have some options where you live...??? are there no other pain guys to choose from? :(

jess

rohrer01
04-15-2010, 12:59 PM
There is only one other in my network. I think they sent me to the one that they did, so I could get in faster. The other one travels a lot. My lower back would get VERY bad as far as pain, then go away, the upper back is more constant and when it flares up, I find it difficult to move, breathe... It's definitely a 10/10 on the pain scale. I think they would have to botox my whole back, neck and ribs. Then I would be paralyzed! LOL I don't know really why they won't offer it to me. Maybe it's experimental? My GP thinks I should go for the intrathecal. He's also looking into spinecor and maybe a special bed to take the pressure off of my ribs. That's a HUGE problem at night. Pressure from my ribs pushes on my spine and the whole pain syndrome flares up. It's kind of hard to sleep when you can't lay down. Thanks for your concern.

dailystrength
04-15-2010, 09:03 PM
Rohrer,

I am soooooo sorry to read of all this pain you are in! I wonder what is going on?! I am glad you are going to find out about some ergonomic options.... besides the medical/surgical route (well, it's all medical)- spinecor sounds like a possibility...oh I am so sorry!

You expressed your feelings so well, but I am wondering if the concerns over having a child are contributing to the pain- anger and frustration can tense you up- I have seen my pain, muscle tension, and rotation seem to lessen as stress decreased. Have you talked to your husband about how you are feeling about having a child for him? Maybe you are putting too much pressure on yourself! We have so much already to deal with.... my heart feels your pain and conflict!

rohrer01
04-16-2010, 05:21 PM
Thank you,
Yes, dear hubby and I have talked about it. I think he has pretty much accepted the fact that I can not give him a child of his own. It's more me. I feel my biological clock ticking away. I don't think I could endure a pregnancy with the pain that I get in my upper back. The lower back is MUCH better after my epidural the other day. The upper back has been feeling pretty good for the last two days. It makes me let my guard down, if you know what I mean. Stress can definitely contribute to pain!
I have just tried to resolve in my heart that if it happens it happens (baby)and if not, then so be it. I have three wonderful grown children and a 19 month old grandson. But with the situation that I am in right now, I am FORCED to be on birth control, something I don't want. I just feel in my heart that it would be selfish on my part to continue to not use birth control while I'm on these strong meds and risk damaging the baby I want so badly. I just need to let go, I think, and forget about the idea of another baby. Thank you so much for your concern!
:)

dailystrength
04-16-2010, 11:05 PM
Oh, that's a difficult situation. Thanks for answering. Yes, I didn't write "acceptance" but I see didn't need to, you're already on the road there. Yes, some things are harder to accept than others. I hear ya. Not to say things could never change, but the hardest part is letting go, right? I have found new life on the other side of broken dreams - in other ways. Probably rambling here; it's been a long week! I hope you have a great weekend.

mamamax
04-17-2010, 04:11 PM
I had a steroid epidural injection yesterday. I thought it was going to really hurt! My upper back, ribs, and neck were hurting me so badly that day that it actually brought tears to my eyes. I barely even noticed the lidocaine injection. Peace of cake. If anyone is worried about having an epidural, my experience was great. I'm actually feeling some results even though I am still sore. I was able to bend over the sink to wash my face and stand back up again without pain. I was SOOOO surprized!! It said that it would take 3 to 4 days before it started working.
:D

I'm so glad this worked out better for you than expected & thanks for sharing the experience. Wishing you all the very best & keeping you in my prayers.

dailystrength
04-17-2010, 11:21 PM
Ha Ha!!! Mamamax, your definition from Dr. House made me LAUGH! ha ha ha.... thanks for that :D

dailystrength
05-02-2010, 08:25 PM
Maybe someone else has tried some of these methods, and maybe not. I'm not sure what I'll do. I think it depends a lot on what the surgeon has to say.


Hi Rohrer, I think that is a great idea; can you schedule another consultation with the neurosurgeon, or at least speak on the phone, about what the Pain Mgmt Dr. said? I would run it by him and see what he thinks. Can you get to see an SRS surgeon? I hope you can...

rohrer01
05-04-2010, 09:48 PM
I went for a cervical MRI today at my local hospital (which is connected via computer with the bigger hospital 35 miles away). I was to follow up with a PA-C in Physical Medicine and Rehabilitation. By the time I got home, there was a message on my answering maching that "someone" looked at my MRI and decided that a PA-C wasn't qualified to see me and that I needed to see a doctor. They put me on a waiting list to try to get me in ASAP but couldn't actually schedule me until June 15th. I don't know what to think???? What could possibly be so bad that the PA couldn't tell me, yet not urgent enough to get me in right away? :(:confused:

gmw
05-05-2010, 05:11 AM
Hi Roher01--do hope you can get in before June 15. That's a long time to have to wait, not knowing what is going on.

rohrer01
05-05-2010, 02:10 PM
Tell me about it. I will call my Primary Care Doctor next week. By that time the "report" should be in and he can tell me what it says. I hate it that they just can't tell you over the phone. What a dumb law to say that only the doctor can tell you. I suppose that a nurse without the proper training may get the Dx wrong and freak a person out. Oh well....