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Old 01-27-2013, 12:49 PM   #1
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Frustrated

Hi all. I have been posting to this board for a while. I needed to vent.

Briefly I have been thru my share of spine problems. I have been thru several major surgeries to the cervical/thoracic and lumbar areas. Part of surgeries include Harrington Rods implanted in both areas.

Part of my life has now been in the area of "Chronic Pain." I have been the medication route. Numerous medications over the years. Spinal Cord Stimulator that was implanted and removed because it didn't help me with my pain.

Now most recently I have had an Intrathecal Pain Pump implanted to help me with my mid back & low back issues. It has done wonders. Finally a medication that seems to help me restore some of the quality of my life.

But the pump was implanted and I was told it would really only be effective for the mid back & low back area. For whatever reasons an implant could not be done to help my ENTIRE SPINE.

While I am greatful for the relief that I have finally found I am also frustrated too at the moment.

My cervical area has a number of issues. In looking over MRI's from the present and looking back from prior studies, it is noted that there is "Myelomalcaia," and "Spinal Cord atrophy." There are other issues such as bone spurs at several levels I believe.

I have been unable to find a great deal of information on Myelomalicia. Yes I know what it is and basic information. But it doesnt appear that there is a geat deal of information or that there isnt a great deal that can be done for correcting the problem.

My neurosurgeon I have been seeing for a number of years. He is concerned about what he sees in the Cervical MRI. He is afraid to touch me surgically for a number of reasons. The surgical approach that he is thinking of would be a nightmare to do on me. He is also concerned about doing surgery on me. There are other health risks invovled in doing surgery on me.

So for now not much is being done. The last MRI it appears that there has NOT been a progression of the problems. I have been trying to exercise the area so that my problem doenst progress. I am not any worse off from my exam from last year. In fact there may have been some improvment in that my hands don't seem to be as weak as they had been.

But I am living with severe nerve damage in the neck and low baci; arthritis neuropathy etc.

I guess I am frustrated because my neurosurgeon and pain doctor are telling me that there really isnt anything that could be done for the myelomalacia. Basically they are telling me to live with what I have. But I am not confident that in time over the years the problem will ever go away.

There are doctors that refuse to see me. I cant even get an opinion on what they would recommend doing as a course of treatment.

But I am sitting here and feeling like I am being told you have a major problem in your neck; there isnt much we can do for you and just telling me pray that it doesnt get worse.

There is a part of me that feels that I need to keep searching. Somehow; somewhere there is at least some answer out there. I just feel like everyone is closing their doors on me.

I can't just give up. I feel like there is an answer out there somewhere. But it is a matter of finding it. Finding that one doctor that my have an open mind or a different way of looking at things and may supply at least some answer. some way of resolving my issues or giving me of a leg to stand on.

Maybe I am kidding myeslf. But I dont feel that I can give up now. But I am out of ideas of where to do my research at this point.

Am I the only one that feels the need to keep searching for an answer? Where do I turn? I feel like I am pulling my hair out at times; ready to scream. Can anyone identify with what I am thinking and feeling?

Any suggestions? Thanks for listenign

 
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Old 01-28-2013, 09:26 AM   #2
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Re: Frustrated

More than anyone on the board, you have the right to your feelings. You have been through so much. You don't know the extent that the pain pump will be able to help you at this point...so I guess, for now, you just deal with things one day at a time.

In my own case, I knew I would continue to look for answers until I found a solution or until I was convinced in my own mind, through all my attempts to find the right doctor to help me, that my situation was "as good as it was going to get" and that I needed to accept that. Since I never got to that end point, I cannot say how I would have recognized it...but, that was my game plan. In my case, I only had problems in one area of my spine (lumbar), so it was easier to search for answers, and I had no other health issues...nothing big anyway.

I think I asked you one time previously, but have you been to HSS specifically to talk about the Myelomalcaia? To me, that sounds like the most difficult thing you are dealing with and I don't know if there are any answers...I just don't know enough about it to say.

Especially this time of year, it is hard not to get discouraged...but hopefully the pain pump will provide enough relief that you can expand the horizons of your life a bit more...and this will lead to fewer feelings of isolation and frustration.

 
Old 01-28-2013, 09:52 AM   #3
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Re: Frustrated

Just quickly. Yes one of my surgeries was done at HSS. Great place. But now they are not on my health carrier list of "in network" providers. So if i go there it is out of pocket and financially right now that would be tough to do. But keeping my options open. May go there in the future for a consult when I can do it. I refuse to give up on getting an answer at this point. I just wont!!!!!

 
Old 01-28-2013, 12:28 PM   #4
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Re: Frustrated

Have you tried an orthopedic spine surgeon? I do think spine surgeons form an opinion (right or wrong) very quickly and tend not to go back to revisit a diagnosis. Sometimes a new set of eyes can be helpful, especially if they don't have previous records and are approaching you as a new patient.

Last edited by teteri66; 01-28-2013 at 12:30 PM.

 
Old 01-28-2013, 12:46 PM   #5
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Re: Frustrated

I havent NOT seen an orthopedic surgeon yet. But was thinking about it. It's a matter of who to see. Still working on best doctor to see and agree a 2nd set of eyes is always the best thing to do.

 
Old 01-28-2013, 10:22 PM   #6
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Re: Frustrated

I would really encourage you to go to an ortho spine surgeon, specifically one who specializes in revision, spinal reconstructions, etc. I've found (not that one should make generalities) that orthos are less fussy than neurosurgeons. They are much more willing to take on a situation that is messy, or where a clear solution is not readily apparent.

 
Old 01-29-2013, 05:33 AM   #7
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Re: Frustrated

I have noted the same thing. I have obtained in the past opinions on the same medical situatio from orthopedists and neurosurgeons. The orthopedists tended to be willing to do surgery and the neuro tended to recommend NOT doing the surgery. I think they have a different way of thinking.

I am trying to figure out who is best to use for another opinion and yes I am searching for an orthopedist to get that opinion.

 
Old 01-29-2013, 06:05 AM   #8
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Re: Frustrated

[QUOTE=pebblebeach3;5124654]I have noted the same thing. I have obtained in the past opinions on the same medical situatio from orthopedists and neurosurgeons. The orthopedists tended to be willing to do surgery and the neuro tended to recommend NOT doing the surgery. I think they have a different way of thinking.
I am trying to figure out who is best to use for another opinion and yes I am searching for an orthopedist to get that opinion.[/QUOTE]

Dear pebble, Ive noticed that orthopedic spine surgeons call a neurosurgeon in alot to assist during surgery in a just in case position. You have come up with a very good idea in my opinion!

Last edited by gmak; 01-29-2013 at 06:08 AM. Reason: wording

 
Old 02-08-2013, 06:14 PM   #9
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Re: Frustrated

I understand your pain and that you want it to be under control in all areas of your spine. My situation is not as serious, but wanting answers and a medical provider that you can afford is important. Many surgeons are willing to accept the amount that insurance pays once the deductible is met. I used an OSS that was not on my plan. I figured my cervical spine was worth it. Good luck with your quest.

 
Old 02-08-2013, 09:00 PM   #10
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Re: Frustrated

GMAK-- maybe they do that in Texas, but they don't do that where I live. The two specialties barely speak to one another!

 
Old 02-08-2013, 10:17 PM   #11
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Re: Frustrated

[QUOTE=teteri66;5130522]GMAK-- maybe they do that in Texas, but they don't do that where I live. The two specialties barely speak to one another![/QUOTE]

Thats so odd to me because that happened to me on my very first laminectomy b/c it was so long ago CT scans had barely been invented, no MRI's & when ortho spine showed my films to neurosurgeon they decided to work together. Also, on my neighbors lumbar, brother in laws cervical & even an ortho hand surgeon had a NS in OR when i crushed my wrist to smithareens!Lol Maybe i had the odd cases! Thanks, teteri

P.s. There is a spine only hospital in Houston & the attending physicians are spine neurosurgeons & orthopedic spine surgeons & in their literature there is much printed about why their hospital is different & it is because they work together as a comprehensive team! It was named Foundation hospital but it has been changed to Houston spine orthopedic hospital! Must be why they are different!Lol

Last edited by gmak; 02-09-2013 at 11:54 AM. Reason: p.s. typos

 
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