CCSVI and CCVBP

[blossom]

hi dr. flanagan,

well, yesterday at the neurosurgeons was a complete wash. they were not rude like the other one. a physicians assistant or someone like that came in first and did the pin stab and the other stuff they usually do. asked questions. i had to give up the could be probable ms info. i stressed and demonstrated the tilt head the strength increase etc.

then the surgeon came in he did not act too arrogant-but he said he would not do surgery. i asked him why since i had sent him the film ahead of time and i thought a person could not even see him if he felt he did not see a reason. he said he wanted to see my symptoms and what he saw of my spine it would not cause them. no explanation by him about my questions of positioning. he said spurs etc. were not that bad."then why the heck did he even see me?"

he wanted me to go to the neuro. there.

so, bummed out here i am. eating a chunk of chocholate-which doesn't even taste that good right now.

[David1949]

Hi David,

... On the other hand, your condition improves with stretching and yawing, which decompresses the spinal canal and cord. This suggest to me that you may have cervical problems as well.

Is Cervical Myelopathy a possibility in my case?
The description I found sems to fit, although mine is all on the left side:
Cervical myelopathy refers to a loss of function in the upper and lower extremities secondary to compression of the spinal cord within the neck.
Cervical myelopathy tends to creep up on patients in most cases. It can result in subtle changes in the way their hands work. Patients feel their hands are clumsier; they may drop objects more often, they may not be able to button their shirts as easily as they could, or their handwriting may become worse. Patients may develop unsteadiness, requiring holding onto objects more frequently while walking. Their gait may become noticeably wobbly.

Should I be wishing for this, or would it be worse than MS?

[uprightdoc]

Hi Blossom,
It is my opinion that spondylosis plays a significant role in MS. A recent review of twelve CCSVI cases further confirmed my suspicions as all of them had signficant spondylois far worse than yours. As we have discussed numerous times before, the problem is that the surgeons don't see the connection between spondylosis and MS yet so they are being conservative for a good reason. Although all the risks are relatively low they don't expect that surgery will improve your condition. The only way you could sell them on doing surgery is to let them know that you fully understand that it may not improve your condition.

[uprightdoc]

Hello David,
Many cases that have contacted me have significant cervical spondylosis (degeneration) as well as elsewhere in the spine as in your case. The symptoms of spondylosis can be just as bad as MS so isn't something to wish for. The only upside is that surgery may benefit certain cases of spondylosis depending on the extent of damage to the spine. The problem is that surgeons don't see the connection between spondylosis and MS so if you have been diagnosed with MS you probably won't find one to do the surgery. The other problem is that many cases have so much damage that even if you could find a sympathetic surgeon he wouldn't know where to begin.

[blossom]

dr. flanagan,

i tried as hard as i could to let them know i fully understood it may not help my symptoms. even that i would sign whatever papers they might feel necessary. i tried to convince them that before he saw me in person he saw spine problems--even if it helped anything at all.

soooooo

[uprightdoc]

I don't get it. Your case is worth trying because the damage is fairly contained to just one or two bad segments and is clearly doable from a surgical standpoint. If you had neck pain or nerve root pain he would do the surgery without hesitation. If nothing else clearing up the obstuction caused by the bone spurs would improve blood flow through the vertebral veins, which would improve the pressure gradient and consequently arterial blood flow to the cord.

[uprightdoc]

Blossom,
Did you get that PM I sent you on the aqua therapy center in your neck of the woods?

[NZer1]

Dr. F a bit of Xmas reading for you.
http://www.eurekalert.org/pub_releases/ ... 122211.php
It seems that it is taking people from outside of the usual medical world to piece together the data details in a way that make some sense.
Merry Xmas,
Nigel
ps I'm still waiting to hear back from the Radiologist, bit close to Xmas to get things moving! He is reviewing my old MRI's etc and will make contact about a plan.

[blossom]

dr. flanagan.

yes i got it. it would be great. it is an outpatient facility. the drive there as often as needed for me would not be possible. i'm roughly 50 mi south. but, i really appreciate you taking the time to find it. it got me looking at possible in home ways of doing this. nothing yet. came across a "michael phelps" exercise pool. whee, i've got champaign taste and a beer drinkers pocketbook.

was the above post you made meant for me? if so, i agree. it is one thing to travel to pitt. and be told no. but if i would go with self pay "where they don't mess with medi care" and i traveled that far and for some reason was told no---my next stop might be in jail. this is all bull.

[uprightdoc]

Hi Blossom,
Yes the comment above was meant for you. It's unfortunate that the aqua PT center is too far.

[uprightdoc]

Hi Nigel,
Thanks for the update and post, and Merry Christmas to you as well.

[blossom]

dr. flanagan,

have a great weekend and holiday.

[uprightdoc]

Thanks B,
You have a good one as well. I am finishing up with some Nat King Cole and then I will be opening a good Belgium beer and we'll be sitting by our five hundred year old European design contraflow masonary fireplace. I mention it in the book. It's as efficient as my super efficient modern furnace and solar system and no moving parts - just perfect air flow and combustion. And a small fire heats the house for days.

[blossom]

dr. flanagan, hope your holiday left you rested and well.

i am gonna get the mri with flexion done again as the one dr. had requested. at least our facility accepts out of state prescriptions. i'm kinda feeling the water "again". i asked more questions and explained some stuff. as i'm doing with them all.this dr. is pretty young but schooled in neurosurgery and orthopedic surgery. did his internship at the cleveland clinic.
i held nothing back "in a nice way" about my condition as of now. "they say the ms thing won't be an issue. i told him as long as i come out no worse than before i'm ok with that.. if i have improvements or it stops the progression i'll be thrilled -more than thrilled.

i forget if i asked you this-one dr. was concerned about spinal core swelling and asked if i had balance issues. i explained the few times i have chiro. adj. fixed it. did you see anything to indicate that?

ok, here i go again. please watch for e-mails here and there. what a shame a perfectly suited dr. close to home, ins. would have paid but no i gotta travel and pay cash. after that pickens will be slim here at home. nothing has been easy but i gotta try this.












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[uprightdoc]

You are doing a terrific job under the circumstance Blossom. You couldn't have been more straight forward with the surgeon. If he does the surgery he will be the first one to treat a case of spondylosis associated with a probable case of MS. You don't have any swelling of the cord.

The holidays were challenging in light of significant setbacks in my condition, especially tremors, spasms and weakness in the right leg. On the positive side, the sleepless nights spawned a very interesting book about an important topic. I also got to try the antidote which worked very well. I don't know if I will find anyone to take the case but I am going try to take this case to court.

I will look for your emails.