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Old 12-05-2005, 10:01 AM   #1
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eileen_34 HB User
Unhappy What kind of Doctor to see? (Sorry, long)

Hi all. I've been lurking for awhile, but now I need some advice.

In December 1998 I had a microdiscectomy at L4-5 for what my neurosurgeon at the time claimed was the "largest herniation he'd ever seen." The surgery was only chosen after my right leg had gone numb from the knee down. I was relatively pain free for a couple of years after, but started having pain and numbness again towards the end of 2001. I had another MRI in the beginning of 2002 and the neurosurgeon I saw then (a different one) said I had 5 bulging discs, but I never received a copy of the films and she didn't tell me where they were. Her advice to me -- lose weight and wear sensible shoes. For that and other reasons, I did lose 70 lbs in 2002 and am within an acceptable BMI to this day. I was laid off my job in Jan 2003, and my insurance was discontinued. The pain, however, did not discontinue.

My general symptoms up until a couple of Sundays ago were numb arms (both) when awakening from sleep, lower back pain stiffness, numb right toe, and intermittent sciatica down both legs.

A couple of Sundays ago, I was leaning into my trunk and I felt an excruciating pain in the middle of my back and I lost control of my legs and fell down. My boyfriend was with me and helped me up, but thereafter I couldn't stand up straight and walking was extremely difficult. When I did walk, the toes on my left and right feet went numb. I was in pain whether I was walking or sitting.

I went to the doctor and for some reason she ordered C spine in addition to L and T spine MRIs. Here are what the reports said:

General C1-C7: Some straightening of the normal cervical lordosis.
C4-5, mild diffuse disc bulge lateralizing slightly to the right.
C5-6, small central and left-sided disc herniation slightly indenting the ventral aspect of the spinal cord.
C6-7, small central and right-sided disc herniation slightly indenting the ventral aspect fo the spinal cord.
T6-7, moderate size midline focal disc extrusion (herniation) extending superiorly from the disc which is causing compression of the anterior aspects of the thecal sac but no significant effect on the thoracic cord. No disk narrowing.
T8-9, small midline focal disc protrusion causing slight impression on the anterior aspect of the thecal sac but no significant effect on the thoracic cord. No disk narrowing.
T9-10, small right sided focal disc extrusion (herniation) causing mild compression on the right anterior aspect of the thecal sac but no significant effect on the thoracic cord. No disk narrowing.
T10-T12, Schmorl's nodes in inferior end-plate of vertebral body of T12, T10, and T11.
L2-3, mild disc desiccation.
L4-5, mild diffuse disc bulge and desiccation. (previous discectomy at this level).

Since in 1998 I had seen a neurosurgeon following my MRIs (on referral from my then primary care physician - an osteopath), I made an appointment with a neurosurgeon this time to discuss any implications of the above. I don't really know what any of it means (any interpretation you might have would be appreciated). However, the doctor I saw this morning was extremely dismissive. He asked why I was there, and I told him. He basically said while there was disc degeneration at several levels, there's no evidence of problems that would cause the symptoms I was describing! He said I should have made an appointment with a neurologist. The experience was horrible. For years I've lived with pain/numbness and just accepted it as an everyday part of life. Now I had these reports that I thought would explain it and once and for all show that this isn't all in my head. And he basically said it was! Again, horrified. I just can't get over it. Has anyone else had an experience like this? Was it stupid of me to schedule an appointment with a neurosurgeon. Does everyone but me know I should have seen a neurologist instead?? Would anyone reading this think that someone with a back in my condition would not feel any pain?

Again, sorry for the long post. I'm just at my wits end. Oh, and I forgot to say, I live in a major metropolitan area, and yet, my insurance does not have any neurologists listed within a 60-mile radius. So I really don't know where to go from here.

Thanks,
Eileen

 
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Old 12-05-2005, 10:19 AM   #2
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proboy74 HB User
Re: What kind of Doctor to see? (Sorry, long)

Hi Eileen....sorry to hear about all the pain......I am not a doctor, but I can make out that some of your discs are drying out and losing their height which would explain them bulging out slightly which can put pressure on nerves. The bottom line is I suggest you go see a spine specialist. A general neurosurgeon or orthopedist may not have the experience with dealing with a lot of spine issues. A neurosurgeon or orthopedist with a spine fellowship in his resume is a good thing and a majority of their practice is dedicated to spine issues that is even better. There are ways to research the background of a doctor and find out his/her education, etc. I would find out as much as you can about a doctor before you make a choice....
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10/26/05-Anterior/Posterior Lumbar Interbody Fusion L4-S1

 
Old 12-05-2005, 10:23 AM   #3
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proboy74 HB User
Re: What kind of Doctor to see? (Sorry, long)

here is a link where you can research a doctor. There is a fee to search, but I think it is well worth the payment: www.healthgrades.com
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10/26/05-Anterior/Posterior Lumbar Interbody Fusion L4-S1

 
Old 12-05-2005, 11:49 AM   #4
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eileen_34 HB User
Re: What kind of Doctor to see? (Sorry, long)

Thanks for the website. I'm just not sure I'm supposed to see any kind of surgeon after what this a-hole told me this morning. He was talking to me like I was crazy or something. Maybe he got up on the wrong side of the bed. Either that or the dude needs to retire.

I am also constrained by my PPO, and like I said, there are none in my area. The closest one is 60 miles away, and although he has an office closer to me (as it turns out), he is booked out until February.

I guess I'm mainly upset that he said there was no reason for my pain/numbness. I guess everyone runs around with 4 herniated discs and just deals with it and I'm a whiner.

Thanks again for your reply.

 
Old 12-05-2005, 01:31 PM   #5
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Quietcook HB UserQuietcook HB User
Re: What kind of Doctor to see? (Sorry, long)

Eileen,

So sorry you are having problems, and more sorry that you met such a poor excuse of a doctor. Being that you are insurance poor, there are still many doctors who will work with you even without insurance, but please be sure you try all options such as medicaid, COBRA, etc. Your state should have an insurance and state assistance agency or departments. Look on the web at your states site and find several numbers you can contact to see what additional assistance is available to you. I apologize that this will be a long post.

Also, if you have not done so, research through your states medical licensing data base and find all the spine specialists within your immediate to near immediate area. If you aren't aware of how to do this, please use the search button to find my thread "how to find a spine specialist in your area" and of course if you further information, don't hesitate to post me a note.

How, as a veteran of 8 spine surgeries, I have been temporarily paralyzed and lost lower body functions. Dear one, you don't want to go there, so please do not wait around, and don't accept what that doctor told you as gospel. You need a true spine specialist and not a general ortho or general neuro surgeon. A neurologist can only treat you with medications for the rest of your life, and if the nerves get damaged permanently, you could loose a lot more function than your legs giving way on you.

Am I trying to scare you to death? No, but I am trying to relay to you how serious the symptoms you have described can be, and from what I see from your post of the MRI, you don't need to be waiting around about getting proper treatment.

I have 10 levels fused, and I'm active and functional today, thanks to a great spine specialist. Mine happens to be an ortho, but I sought out 10 such specialists, both ortho and neuro surgeons before I selected this doctor, as there are a lot of factors to consider. For instance, I wanted a doc who read the films instead of just taking the word of the radiologist, a doc who treated me for the pain from then to as long as I needed it instead of cutting off treatment at 5 or 8 weeks, a doc who didn't mind that I researched and had questions I wanted answered to a level I could understand, and I wanted a doc who made his own diagnosis rather than taking the diagnosis entered by previous docs and the radiologists. I FOUND HIM and oh, the multiple visits and expense was well worth it as had I not found this spine specialist there is no doubt that I would be totally paralyzed today. I know costs are a concern, but you owe it to treat yourself as well as you want any other member of your family to be cared for, so get busy and begin searching for assistance and doctors who will see you now.

Once you find that spine specialist, then based on what they tell you that you need in order to return to a normal life then you can work with them and their staff on any payments that may need to be worked out. Many such doctors donate lots of services and fees when a person is in need. I know that mine does lots of mission work both abroad and in our area, as I have returned things like the $5,000 electromagnetic belt that I would not need again, so someone without insurance could use it when he got the company to donate the programming fees, and I've given he and his partners my arm braces which they can use abroad but are not allowed to reuse state side per the FDA.

Now, let me share this as it might help you some with the pain, but do talk with your own primary doctor before beginning OTC medications. However, with my fusions, I could not take my arthritis meds for months, so the pain was there in spite of pain meds I was taking. He does not like for patients to be in pain as they don't heal well if they are tensed in pain, and as a care giver for an ill parent, I could not take some meds. So, he recommended that I try the triple strength Glucosamine Chondroitin complex, and within a couple of weeks there was a great improvement. For some, it takes longer, but it worked so well that I spoke with my mothers doctor asking if it might help her, as she had bone on bone and needed both knees replaced. Great days, how that has helped. You may wish to speak with your primary doc about some different pain meds. If whatever you have isn't working, ask to try something different, as every med works differently on each individual. There are so many, and fortuantely for me, Ultram tabs which work like narcotics but are NOT narcotics and unless a person's body tends to addict to such meds quickly, it is one of the safest because it is not addictive to most people. With that, I also use the lidoderm patches which are expensive, but in combo with the Ultram allow me to have relief. Your doc will surely have many medications in mind and work with you until you find one that works for you, but that does not mean take meds to mask the pain and do nothing to fix the problem.

Finally, let me share what my general ortho and neuro surgeons I was with at first did not tell me, but the spine specialist did. They had already let me go way too long and I was fortunate that my doc was so skilled, but when there is severe pain and especially if your legs go out on you, you have numbness, etc, if that is relieved or corrected so that it no longer is doing that to you within 6 months, there is excellent chance of full recovery, but that drops to only a 75% chance of full recovery at 9 months and only 50% at a year or so. Find a spine specialists, as a brace and PT may be what is needed, but if surgery is required, you want someone who is totally dedicated to the spine 100% of the time instead of maybe 25% of the time.

Best wishes and let us know how you are doing.

 
Old 12-06-2005, 07:33 AM   #6
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eileen_34 HB User
Re: What kind of Doctor to see? (Sorry, long)

Quickcook,
Your post was long! But it's ok, and I really appreciate your input. I was having a very down day yesterday and it helped to read it. With that said, I'll respond in order of your post.

Yes, he was a poor excuse for a doctor. As I'm sure can understand, some days are better than others pain wise, and yesterday was more towards the bad. Maybe I would have handled him a little better if I had been feeling better. And I do mean handle him. There are so many things I would say to him if I had the opportunity again.

Re: Insurance. I actually have insurance, although it doesn't seem nearly as good as when I was with my last company. I was finding yesterday that they don't have many neurologists on the plan, and in fact, the only one they had listed was 60 miles away. It turns out that he has an office closer, but he was booked out until February.

Re: how to find a spine specialist. I did the search as you suggested, and I found your thread, and I also found another thread with suggestions for good docs in my area! One of the ones suggested is on my insurance plan. I called their office today and talked with the reception about what sort of doc he is. He is a Ortho surgeon with a spine speciality and likes to try conservative methods prior to surgery, which sounds like a perfect fit. It's about the only thing that the quack yesterday and I agree on - that I don't necessarily need surgery right now; I just want to make sure I'm treating my condition properly now and in the future. My appointment is scheduled for next Tuesday. It would be wonderful to find a good doc on the second try!

Re: OTC meds. My regular doctor strongly suggested also that I start taking Glucosamine Chondroitin complex. I haven't quite had the opportunity to seek it out. I'm really bad at taking pills on a regular basis, especially ones as big as those (I've taken them before) but she said she thinks they come in a liquid form now. Do you know anything about that? And Im definitely going to ask her about the Ultram. I've got darvacet right now (because I can't tolerate percocet after my last surgery) but it makes me stupid. In my profession, reading comprehension is very important as well as being able to put together coherent thoughts. I can't do either very well when I'm taking those!

I have physical therapy today at noon, and am very excited about it. Actually, the week before my back went out as I described in my original post, I had wanted to see if my insurance would cover massage (because my last company's insurance plan did). Turns out, they don't, but they do cover physical therapy (which can include massage - yeah!), but to get PT, I needed to have an order, and to get an order, they needed a reason, so I had to schedule a regular doctor's visit, to get the MRI and PT. What a rat race. But as fate would have it, my back then went out, and I didn't have to schedule an appointment because I already had one. I guess I could feel it starting to go--the pain, burning, numbness and weakness had been increasing over the last several months.

Ok, I've rambled on enough. Thanks again for your reply. Take care,
Eileen

 
Old 12-06-2005, 08:20 AM   #7
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Quietcook HB UserQuietcook HB User
Re: What kind of Doctor to see? (Sorry, long)

Eileen,

Yes the glucosamine is a large pill, but it does come in a liquid form, and also comes already packaged as a fruit type drink which should be easier to handle. My cousin drinks it and I believe she gets it at Sam's Clubs and Wal-Marts by the case. Not sure where they stock it, but it is called "Joint Juice". That's funny, but appropriate.
Have considered trying the juice, but I find not tasting something is better for me, and I've adjusted to the horse sized pills.

Hope your PT goes well today and you can feel better. Keep us informed on how you are doing. Best wishes.

 
Old 12-06-2005, 06:41 PM   #8
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Re: What kind of Doctor to see? (Sorry, long)

Since it has been so long, I hope that this new doctor will order an MRI of the lumbar spine. It seems fairly obvious to me that there is a pain generator below L1.

Carol
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2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 12-07-2005, 10:37 AM   #9
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eileen_34 HB User
Re: What kind of Doctor to see? (Sorry, long)

Hi Carol -- It's pretty obvious to me too! But, yes, the MRI results listed on my original post were from MRIs done in the last two weeks. C & L were done the week before Thanksgiving and T was done the week after.

 
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