Minnesota?

[amoret]

I live in North Dakota, and may be looking for a neurosurgeon again. Minneapolis or Rochester woud be could since my daughter could help with driving. I'd also be willing to travel further, but then hit transportation issues. Thanks.

[Dawn]

Can you tell us what issues you need addressed? I have been working with Mayo Clinic in Rochester and have mixed feelings about my experience there.

[amoret]

Long story, but I had surgery two years ago, ended up being just an inconclusive biopsy, followed by an infection and a really nasty allergic reaction to the antibiotic that involved a couple of weeks in icu. Anyhow, after that I wasn't much interested in surgery, but have been getting worse symptoms and some increase in the size of my "probable autoimmune process" c4 to c6.

My neurologist has referred me to a local neurosurgeon, and I won't know until after I meet with him, but I doubt that he has much experience with this. I have also contacted Dr. Jallo and sent him my MRIs but haven't heard back yet.

I did have a work up at Mayo after the whole surgery/allergic reaction mess, but basically they just confirmed my original symptoms and agreed that the biopsy was inconclusive. Since at that time I was still on dialysis for kidney failure from the allergic reaction, and totally out of shape after close to three months in hospitals, nothing happened from there, since I really just wanted to keep going with rehab. They did recommend high dose iv steroids, which I did try once my kidneys were sort of working again, but with really minimal results.

In the meantime my loss of proprioception, neuropathic pain, etc. have been slowly but steadily getting worse, and as I said above the last MRI showed increase in size (the MRIs in between were inconclusive since they couldn't use contrast until my kidneys improved) so I'm starting in on the possibility of surgery again.

[Dawn]

I'm sorry for your experience. Sounds like you have had a complicated experience. Sounds like a good idea to see if Dr. Jallo can help. I keep hearing very good things about him. I have been working with Dr. Derek Johnson, neurologist, at Mayo in Rochester. I am not happy with the care received there. He is a very nice man and tries hard, but he is young and I believe he may be too inexperienced to work with such complicated cases. The only other place in MN to go is the U of M. I saw Dr. Forsyte there for a 2nd opinion, but he had never seen a patient with an intramedullary tumor at C2 so declined to follow my case.

Those are my only MN experiences. I am heading to MD Anderson next week for 2nd opinion with Dr Laurence Rhines and hoping for a good experience.

[millelacskay]

I was operated on by Dr. Krauss at Mayo in Rochester and he did an amazing job removing the remainder of the L5 schwannoma that my first neurosurgeon could not remove so I have been extremely happy with Mayo. Sorry to hear about all of your problems from the original biopsy - hopefully you will get some good information from Dr. Jallo.

[amoret]

Thanks. Yeah, for some reason I'm really reluctant to consider surgery again after everything that happened last time. And up until then I had been the poster child for successful outcomes from surgeries on other parts of my body. Part of why I wasn't expecting everything to go wrong.

[samuridude]

Hi Emoret,

"In the meantime my loss of proprioception, neuropathic pain, etc. have been slowly but steadily getting worse, and as I said above the last MRI showed increase in size"

I can only relate to my experience as everyone is different. I didn’t have the option of waiting and my decision was to get it the hell out of me ASAP.
The issue besides numbing, severe weakness, pain was bowl and bladder. The longer that tumor was in me, the chances of repairable damage decreased.
If they would of caught the tumor much sooner, the chances would have been better that I would of walked out of the hospital rather then wheeled out.
I spent 2 weeks in a nursing rehabilitation center post surgery before I graduated from wheel chair to walker. The doctors and rehab people told me I was screwed
but I proved them wrong. I’ve been a athlete most of my life so I was able to call on that attitude to push myself past the line in the sand. The rehab people couldn’t believe that I was doing exercising three time a day laying in bed with one of those resistance rubber band things. Don’t get depressed, just get pissed!

-Good health

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