my torturous week at Mayo clinic
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June 22, 2011 at 6:24 pm
as promised I am writing regarding my work up at the mayo clinic with the legendary Dr. Dyck Started with visit with Dr., 24 hr urine collection and sensory nerve test on day 1.
Day 2 consisted of labwork, autonomic nerve testing, EMG/NCV and the longest most painful needle EMG i have ever experienced(i think it could have been used as a military torture device) a full body bone scan, a full body pet scan.
Day 3 was sweat test–in which i turned completely purple like Barney! pre-op for futue nerve biopsy and a lumber puncture (from which i got a headache from hell).
Day 4 was nerve biopsy procedure–which i endured through my spinal headache. followed by a follow up visit with the dr. I would have been done in 4 days had i not had complications from the lumber puncture. i ended up going back Friday for an epideral patch on the lumbar site–and am STILL battling a bad spinal headache.
Keep in mind some of the testing in my list above is because a paraneoplastic antibody showed up in my previous labs. End result so far…..are you ready for this….C—I—D—P !!!! I will get a full report once the nerve biopsy is back. Right now Dr Dyck is leaning toward a more aggressive ivig regimen fro me—all cancers ruled out..was it worth the trip???? Let me decide when this spinal headache goes away!!! Hope this is helpful to anyone wondering what a week at the mayo might consist of. -
June 22, 2011 at 9:58 pm
Yes, having a spinal tap headache is the worst thing I have ever experienced.
Following my first spinal tap, and then a trip of about 100 miles home, I got a headache. The headache persisted.Poor me, it was July 4th weekend. The outfit that did the spinal tap suggested I got to the ER, if need be. First, 100 miles was too far away to return. Second, it was, as I said, July 4th weekend now.
I suffered with it. I suffered for days and days. In retrospect, it was a poor decision on my part.
Which is exactly why, when I was at Mayo, my wife and I checked out of the campground and into a hotel for my 2nd spinal tap. Oh, well, the 2nd spinal tap went flawlessly. No puncture pain, no post tap pain, and most significantly, no spinal tap headache.
For more on the cure for a Spinal Tap Headache, called a “Blood Patch” please see this Northwestern Raadiology discussion:
[url]http://www.spine.northwestern.edu/for-patients/blood-patch/[/url]
I hope your headache is better now!
Oh, by the way- anybody know where the spell checker went?
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June 23, 2011 at 1:04 pm
I hope someone has told you to drink caffeine. It should help relieve the headache.
I have researched Dr. Dyck & I really think his use of IVIG has been spot on. I like that he is not afraid to treat CIDP aggressively.
I hope you are able to get rid of the headache soon!
Yuehan – Your link did not work for me.
Kelly
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June 23, 2011 at 6:01 pm
shucks, that’s disappointing that a link won’t work. I usually copy and paste them during the preview phase to make sure they work.
hmmm, a big mystery. It still works for me.
try again
[url]http://www.spine.northwestern.edu/for-patients[/url]
then, click on blood-patch (or, whatever else)
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June 24, 2011 at 8:25 am
Lori,
So sorry you went through all that 😮 , but thanks for the information. Reading all the various tests, I’ve not had the full range of those (lumbar pncture – yes, nerve biopsy – no), but your description of them is a good roadmap for people who have a neurologist that maybe isn’t as familier with CIDP (and is willing to admit it!) and isn’t completely sure it is CIDP, to follow for testing and diagnosis.
It sounds stressful! I can’t wait for research to come up with better methods of testing and diagnosis. Good news, no cancer!
Hope the headache is gone, gone, gone!
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June 24, 2011 at 7:15 pm
the headache is slowly but surely improving. yes the caffeine did help once i got to the point i could hold it down–i had extreme N & V with the headache–also vertigo : (
Yes Kelly I am VERY glad Dr. Dyck is suggesting an aggressive ivig approach to try to put the disease into remission. I cant wait for his report so i can get started!!! still waiting on the nerve biopsy results to finish up.
Although— I am a bit upset that my own neurologist wouldnt try the aggressive ivig without Dr dycks recommendation. I have been giving her e-mail links and podcast links to his sites which recomment this more aggressive approach for quite a while now??? Lori -
June 24, 2011 at 10:32 pm
Lori,
I am very sorry to hear of your experience at Mayo, but your post didn’t surprise me. I hated the whole assembly line medicine gig they do there.
Monitor your progress closely and maybe even make a daily journal of how you feel including if you are better or worse after each infusion. How you feel after the high dose ivig etc.
I would make a line in the sand saying that when you get to your predetermined bad condition, its time to look into other options. Please don’t wait til you have anything irreversible.
The line for me was when I began falling and losing balance more often, then I would find another way.
Your doctor wont know much other than what you tell him. The exception being changes in your usual neuro exam, such as strength, reflexes etc.
Wishing you the best,
John -
June 25, 2011 at 11:30 am
sounds like you have had quite a week too—hope you are feeling better and all goes well at Northwestern. Thank you for the advice—yes i will keep a journal of my ivig progress. so far–having ivig every 12 and then every 6 has not given me significant improvement. I am hopeful that a more rigorous approach will–but am ready to suggest PE if it doesnt. after reading several posts from people here who responded to pe after not responding to ivig I have been wondering if I should just ask for a trial of it to see?? Did you have a set point at which you were determined you were ready to switch from one proocedure to another? I am finding that part to be stressful—my neurologist suggested i give the ivig a year at 12 weeks, now another at 6 weeks—–dont these people realize a year is a long time to be unable to do everyday things we enjoy??? Am i truely being an unreasonable patient to want quicker results than a year? Lori
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June 25, 2011 at 2:26 pm
Hi, Lori:
I had no luck with IVIG and got worse, in fact, despite it. I don’t know if that is your situation, but definitely I think you should expect results fast. I was told by the third series. BTW, I was getting it every month — 2 back to back days. I am not surprised you are not seeing results at 12 weeks given the huge space of time between doses.
I also suggested to my neuro that I try plasmapheresis. He did not think it would work…felt that if IVig didn’t then quite possibly PE would not either. Also he mentioned that I would probably have to have a fistula made out of existing blood vessels. My neuro felt that prednisone would be better which did at least arrest the disease.
Sharon
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June 25, 2011 at 5:50 pm
I have read many posts here where members have said that ivig did not work for them and then pe did. My neurologist told me that if ivig isnt working then most likely pe won’t either??? After reading of many who were successful with pe after failing ivig I think if the more aggressive ivig doesnt improve things then I too plan to request pe. Lori
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June 25, 2011 at 10:50 pm
[QUOTE=Lori222]I have read many posts here where members have said that ivig did not work for them and then pe did. My neurologist told me that if ivig isnt working then most likely pe won’t either??? After reading of many who were successful with pe after failing ivig I think if the more aggressive ivig doesnt improve things then I too plan to request pe. Lori[/QUOTE]
Totally NOT TRUE. I started with IVIG only, made minor improvements and relapsed quickly. Then I got PE only, and made minor improvements and relapsed once treatments stopped. Finally I got PE, IVIG, and pred all together and that worked. There doesn’t seem to be one set treatment that works for everyone, but too many doctors refused to believe this.
-marie
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June 26, 2011 at 2:05 pm
I didn’t start improving a whole lot until my wife suggested that the doctor try steroids along with my IVIG. She started me out with 80mg along with IVIG weekly then has been tapering down on both. I will finish my steroids next week and my IVIG is now 6 weeks apart. When she started me on the prednisone all I could do was use my right hand, nothing else. This was back in November. Now I am able to walk again using my cane and even sometimes I will go from one room to another using nothing but still a little unsteady. I have had CIDP since last July but I still don’t have much use of my left hand at all. Good luck with the treatment that is decided for you. I have a wonderful doctor that doesn’t mind us making suggestions and listens to what I have to say.
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