no surgery - rock & a hard place?

[Ufrustrated2]

after years of requesting a neurosurgeon i finally saw one today at the VA. i can't recall all what he siad due to my hearing and stuff.

the bottom line is this: he wouldn't feel comfortable performing the neck surgery due to my ms and risks involved.
and that the pain could actually be caused by ms and not nerve compressed by bone on bone.  he said no doubt you will need it, but as of now the risks out weigh the benefit. he said by looking at the MRIs, i should be complaining about pain in my upper left quadrant, not my right. that was the first i had heard that.

hope i'm not lying to myself as it takes awhile for things to sink in for me, but i will say this, the San Diego VA is quite good, professional, listened, weighed the options, and didn't dance around the MS issue or the surgery issue.  

since this is the va, everyone calls it "ms" there but i haven't seen an official written diagnosis from them explicitly stating that.

now i'm stuck in that i don't really know what is causing this bizarre really painful upper right quadrant, ms or no disks in a few places? i was so looking for a little surgery procedure that would eliminate this particular pain.  

**i'm writing to ask, is that a real possibility that folks with ms can get really worse after spinal surgery as he mentioned? said he saw it happen in his "training days" to some patients.

[Ufrustrated2]

thanks, and no problem.

i will write him a note/fax and ask for a reconsideration along with trying to get a non-va opinion, if i can afford it.

i did email a pm about it but i may have pm'd someone else. LOL

i'll update this when i get some new data/info from the docs..

thnaks

[Quixotic1]

Hi, Sorry I missed the shoutout.  Feel free to PM me to tell me to get my rear in gear.

A surgeon has the last say whether or not they will perform the surgery.  He seems to be under the mistaken opinion that your MS places you at a higher risk.  The anesthesiologist should be able to inform him that it does not if you do not have MS involvment of the respiratory system.

He also just may not want to do it for whatever other reason.  I think you could certainly write him a letter and state that you are NOT at any greater surgical risk and send him the NMSS stuff and ask him to talk to anesthesia about it.  Tell him how much your quality of life has suffered and if you could improve just one thing how important it would be to you.  Ask him to reconsider.

The worst thing that could happen if you did this is for him to say "No."  And he has already done that, so you are no worse off.

If it is not clear that the neck is the cause of so much of your trouble vs the MS, then the risk to benefit might not be clear at all.  Many epople report relapses after surgery, though it has been studied and the finding was that surgery alone was not a clear trigger.  In the setting of a post op infection, though, it could be a potent trigger of a relapse, but, of course that would be due to the infection and not the surgery.

Did this help?

Next time just reach in and drag me over here.  I don't read every post, if things seems like they are getting a good exchange.  I am not the ultimate say on things, lol.

Quix

[Ufrustrated2]

i guess i could post what the neurosurgeon wrote, but i don't see the point.

to reproduce some it all one has to do is push on my head and move it back towards my right and i'll flinch real good.

the neurosurgeon didn't do that. folks at my MS support group said the dr could be right about an attack worse then benefit. and he wasn't sure the pain was coming from the neck degeneration, pinched nerve etc.

obviously my local va neuro didn't etther as he sent me to an ortho doc who in turn said i needed a neuro surgeon. and the ortho doc stated it could use surgery but that didn't mean they would do it. said he had a neck and pain like mine from a skiing accident.

so who the heck do you believe? i don't want surgery but i don't want this pain either. i want to be able to run, jump and things again and i get no freaking answers that i can work with.

i will try to see a non-va neuro surgeon and be evaluated. i'm going broke having to pay out my own pocket to verify or counter what the VA rationing system states.

i wouldn't be on copaxone if i hadn't gotten ms diagnosis from non-va neuros.

as for Doc Q napping, i hope so, i feel like it too. one moment ready to do something, then next moment have to lay down. and too, she has read enough of my bullsh!t stories coming from the VA.

fact remains, the pain is still there and i'm still without a clear reason. i requested new MRIs but i doubt that will be approved.

thx

[ashleyPT]

I have some thoughts after reading your report.

I don't see anything that would cause me to look for pain on specifically the left side from the radiologists notes.  All protrusions are noted as posterior with no mention of a lateral bias.  

I am a little confused about a neuro saying that the pain could be from MS. It is fairly easy in most cases to determine if pain is mechanical.  Maybe a PT would be better suited to differentiate your pain symptoms.  But, a good history about the patterns of your symptoms in that area, and a good physical exam to see if and how your symptoms can be reproduced and alleviated should answer that question about the cause.

Next - I understand that there is no evidence linking MS exacerbations to surgery, but I've treated a few patients that would disagree with that.  I'm not sure I've ever seen a study addressing this issue.  

[Karen99]

My guess is she's taking a cat nap.  LOL   My three cats are blinking and napping and I'm taking that as an invitation to join them.

Just wanted to chime in that I''m glad the SD VA was good to you, even though you feel like a ping pong ball.  :-)

[Ufrustrated2]

where ya at Doc Q where ya at? LOL

[Ufrustrated2]

03.26.10:: MRI 8-24-09 cervical area radiologist impression

you can go to my journal page, and look at an image of the radiologist report. the journal entry number is the one listed above. just open that entry and click on the image.

maybe Doc Q can ring in a comment about the "motion artifact". maybe that is why the doctor wants to postpone surgery till i'm really old?

[Ufrustrated2]

with your post, it makes me wonder why the surgeon used the "ms/demyelinating" disease as a reason not to do the neck surgery?

i'll go and scan the mri report and post it here as i don't feel like typing that out. maybe surgery isn't warranted? maybe the pain is coming from MS/lesion or something? what do i know. i'm a ping-pong ball in the VA system.

[Lulu54]

UF2,
A quick look and I turn up this from the NMSS site ----

"Surgery
The majority of people with MS are young, otherwise healthy adults, whose risks during elective surgical procedures are about the same as the general population. MS is generally not a reason to avoid having surgery.

Most people with MS can tolerate standard anesthesia without undue risk. Special consideration may have to be made for the minority of people with MS who are severely disabled or have respiratory problems.

There is no evidence that the stress of surgery will bring on an exacerbation of MS. An exacerbation-also known as an attack, relapse, or flare-is a sudden worsening of an MS symptom or symptoms, or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month.

Generally, in the absence of complications, people with MS who undergo surgery do not find that it impacts their neurologic status. Infection or fever, however, may tend to aggravate symptoms of MS. Additionally, patients who have muscle weakness and who have been confined to bed for more than several days, may find it harder to recover from surgery. Physical therapy is often useful in these instances, and should be started as soon after surgery as recommended by a physician."

http://www.nationalmssociety.org/living-with-multiple-sclerosis/getting-the-care-you-need/doctors-visit/anesthesia-and-surgery/index.aspx

There is more on the site about anesthesia.

Obviously you don't want to have surgery on something if is really isn't the problem ....

I'm so happy to hear the VA in SD was better to you...

be well, L

[Ufrustrated2]

basically there is no disk in one area due to degenerative disease, and one is herniated.

i'll try to scan the report to test and post it and you can see for yourself.

my state insurance won't cover neurosurgery so i can't to to an outside doctor for a non-va opinion on this.

[michelleric]

What do you need surgery for? Do you have herniated disc(s) and where are they located?  What kind of symptoms are you having? What did the MRI say?

I have MS, and I had Cervical spine surgery 1/09.  It did set a relapse off for me, but I needed the surgery.  I saw 4 different surgeons for 2nd opinions, and they all said I needed surgery ASAP.  My MS diagnosis at that time was "probably" MS, but they all said to go ahead with the surgery.

Good luck to you,
Michelle