Happypoet...any news from your trip?

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Happypoet...any news from your trip?

Postby Anonymoose » Mon Feb 04, 2013 2:58 pm

I hope it went well!
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Re: Happypoet...any news from your trip?

Postby HappyPoet » Mon Feb 04, 2013 8:25 pm

Hi Anonymoose,
Thank you for asking about my cervical orthopedic surgical consultation. I just lost a long reply which I'll recreate tomorrow, but for now, in short, he said he wouldn't remove the spurs now--he wants to wait until the spurs start to cause motor symptoms with my arms, but as an "MS" patient, I don't feel I have time to wait/waste. Will explain more tomorrow.
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Re: Happypoet...any news from your trip?

Postby Anonymoose » Tue Feb 05, 2013 7:31 am

Oh. :( I'm sorry it didn't turn out as you would have liked. Why wait for the spurs to cause motor issues? Does the doc think they won't? You can still do the AO alignment can't you?

Maybe I should just wait for your explanation. I swear I'm not 5.
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Re: Happypoet...any news from your trip?

Postby HappyPoet » Tue Feb 05, 2013 9:23 am

Anonymoose, great questions.

The surgeon believes that sensory symptoms don't count for beans and that patients should just live with their pain symptoms until motor symptoms start appearing. This strategy might be okay for the average patient, but I don't consider myself the average patient, especially because pain can, by itself, cause me to have exacerbations that bring new symptoms (both sensory and motor) and new lesions. This surgeon and others like him delay surgery for as long as possible with the hope that surgery won't ever be needed, but this strategy makes no sense to me for my case for several reasons.

The longer in time the cord is compressed/indented, the less chance there is that the cord will bounce back to its original shape and heal. Also, my CSF flow is being compromised by the spurs and stenosis, but the surgeon said he isn't concerned--I don't think he understands the importance of proper CSF flow. Another worry is that there is a point at which it becomes too late to remove bone spurs and stenosis, and with my poor luck, I would pass the point of no return if I wait like this surgeon wants--this is a risk I'd rather not take. Also, I've read that recovery from this surgery is easier at the 'moderate' stage than it is at the 'severe' stage, and I never recover well from anything. Cervical surgery has risks, but so does not having cervical surgery.

The surgeon completely disagreed with the radiologist's MRI report which leaves me very confused. The radiologist used the descriptor 'severe,' but the surgeon said, in his opinion, my spinal problems are only 'moderate' (the scale used is minimal, mild, moderate, severe).

The normal cord diameter is 10-12mm, and many surgeons believe the cord can safely withstand being compressed/indented to a diameter of 5-6mm. Maybe the average patient's cord can handle such compression, but I don't think my cord can because I already have demyelinating lesions at all levels of my cervical spinal problems, e.g., bone spurs, stenosis, etc. My cord has also been weakened by past lesions that no longer show up on MRI.

He wants to see me in six months for a follow-up appt, but I'd prefer to have the spurs removed now, so I plan to get a second and third opinion--and maybe even a fourth and fifth opinion--because this is my neck which is mighty important. Oh, how I wish I was a fish (no neck, an evolutionary leap I could have done without).

In the meantime, while I wait for more appointments for more opinions, I'll continue with AO chiro to help keep my CSF flowing as much as possible. I'm also going to drink a special vinegar recipe to help dissolve the spurs and stenosis--this worked for my father, though he ended up in the hospital due to acidosis because he drank too much straight vinegar which is a mistake I hope to avoid by use of the special recipe and instructions. I think the surgeon knew I would go the vinegar route because he told me not to try "any more Internet gimmicks" (I'm pretty sure he was referring to CCSVI).

If I find a surgeon willing to operate, I'll post an update.

Oh, btw, I like your name, Anonymoose. My guess is that you live in Canada or the state of Maine. :)
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Re: Happypoet...any news from your trip?

Postby Anonymoose » Tue Feb 05, 2013 9:49 am

Sheez. That doesn't sound very proactive of the doctor. Why allow further damage? Can you send your films before you make the trips so you don't waste all the time, stress, and expense going for identical 2nd and 3rd opinions? Phone consultations? Skype?

Best of luck with the vinegar and getting someone willing to save your neck now.

Oh. I just registered here to anonymously warn someone that he had published his personal info. Anonymous and anonymouse were taken. So, anonymoose I am. I do have a moose from Maine on my Christmas tree though...er when it's up. :)
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Re: Happypoet...any news from your trip?

Postby HappyPoet » Tue Feb 05, 2013 4:58 pm

Well, I saw my primary doctor this afternoon who said I won't find a surgeon who will touch me until the spurs cause motor damage and my stenosis is at least 98%. He said the risks of cervical surgery--short term and long term (scar tissue, weakened structure)--are too great to operate unless the situation is dire, and he doesn't want me to have the surgery. He also told me that insurance wouldn't approve cervical surgery for me at this time. He did promise, though, to continue to write methadone scripts for my pain (so it doesn't look like I'll be able to get off the narcotics for a while). I completely forgot to ask about aldo blood work, and I didn't want to discuss vinegar with him so didn't mention the special recipe.

I have a scheduled appt with a local neurosurgeon (my second opinion) and don't plan to travel for anymore opinions. I'm not sure Skype/phone would work for a surgical consult because a thorough neurological exam is necessary, although I have a feeling some of these surgeons already know in advance when a patient is not a candidate for an operation but let the appt be booked anyway just for the income and revenue from in-house imaging (I do try not to be so pessimistic). I'm starting to think about scaling back on the number of opinions I'll be seeking because preparing for this type of doctor appt takes so much out of me, emotionally, cognitively, and physically--getting my hopes up is exhausting.

On my trip, I was able to see members of my family and a close friend from TiMS and am very glad I went. While I didn't hear what I hoped to hear, I did learn a lot which led me to learn even more. But one of these times, I'd really like to have a doctor who will actually listen to me and honestly answer my questions.
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Re: Happypoet...any news from your trip?

Postby blossom » Tue Feb 05, 2013 10:38 pm

quote poet:. But one of these times, I'd really like to have a doctor who will actually listen to me and honestly answer my questions

hey poet, i've been at this rodeo since my mess all began and haven't found one yet as you know. but, hopefully if enough people with this so called ms would start to get out from the theory stuff about all this. and, what is worse, neurosurgeons and orthopedic surgeons are under the same spell-that ms is auto immune treated with drugs. most i'd venture to say even though they might be the greatest surgeon do not understand or do they want to go out of their comfort zone and learn the importance and connection csf flow or any of what "we have to say". and, they have "selective"hearing just as neuro's do. but, as a patient, if "we" really listen you will hear them talking out both sides of their mouth.

quote poet: , although I have a feeling some of these surgeons already know in advance when a patient is not a candidate for an operation but let the appt be booked anyway just for the income and revenue from in-house imaging

i agree and there have been others i've tried that by looking at the mri's and saying they can help but when seeing the holy grail word "ms" they brush you off. but my opinion on this guy we went to was that he looked at nothing until shortly before our visit-only addressed the tip of our mri's -- and made no mention or explanation of the x-rays he himself ordered. i could hear him with other patients as i waited-i heard him with the pa that had checked me out "a little" and the time span was very short. and, by his remarks i knew did not spend the time and thought i had hoped for. "and i was tuned out"

poet you can explain the many causes of lesions-would you consider starting a thread that would better help others to understand as you helped me to explain especially the spinal lesions. i knew what i wanted to say but you found the research and are better at saying it right in the medical way.

i think that might get others here thinking about the nasty lesions in perspective.
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Re: Happypoet...any news from your trip?

Postby HappyPoet » Wed Feb 06, 2013 11:47 am

Hi blossom, sometimes I forget, but we can use a 'self-pay' spinal clinic like Atlantic Spinal or Laser Spinal for the cervical surgery we want; however, the out-of-pocket cost is very steep (which is probably why I forget this option). Hopefully, a compassionate surgeon can be found who's willing to fight our insurance companies so they'll pay for the surgery before our already-weakened cords become even more damaged.

If you're referring to studies that show spinal column trauma can be a cause of lesions, I'll look for the links. But I've had lesions where there isn't any vertebral trauma, which is why new theories, such as Dr. Flanagan's CCVBP, Dr. Zamboni's CCSVI, and Dr. Schelling's Venous Back-jets, are so interesting--they offer other explanations for lesions--refluxed blood and pressure waves through the cerebrospinal venous system.

Even if your cervical lesions were caused by CCSVI and appeared before your bone spur, I can see how the spur, upon flexion, extension, and twisting of the neck, could irritate the cord and impede proper CSF flow. A sort of chronic, randomly intermittent problem.

Tough decision we have to make, damn tough.
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