The Jho Institute in Pittsburgh plus one other question re recovery time

[sharonov]

After 4 years of happily receiving the "no growth" report for my under 2 cm AN, I developed trigeminal neuralgia and then my neurosurgeon said that I need retrosigmoid surgery.  That was Thursday, and I've spent many hours in front of the computer reading this site and many others.  After the last AN convention, I had decided that if I ever needed to get rid of the thing I'd have Cyberknife in Stanford  and have now been thrown for a total loop.  (The best laid plans of mice and men gang aft aglee.)I expressed this in a previous post and many of you have been unbelievably supportive.  So here I am again.

First of all, I came across a site that seemed intriguing, for the Jho Institute in Pittsburgh.  Has anyone gone there?  He doesn't use brain retractors, which would appear to be a good thing.  Maybe.   http://drjho.com/acoustic_neuroma_surgery.htm  The less action around my brain the better.

Second, my neurosurgeon said that if I had my retrosigmoid surgery in early August, I'd be ready for a trip to England by Sept. 15.  I have my plane tickets already and have rented a cottage for a week in the Cotswolds.  I plan to do a lot of walking.  Sound possible?  I'm 67 but pretty active.  Not one of the super-fit runner/hiker types, but I walk a lot and am not terribly overweight.  Well, maybe a little.  Hey, I go to Curves!

I could also postpone the surgery until I return in October I suppose, and just keep taking all the meds I'm on to control the TN.  They take away alot of my energy though.  Yikes!  What to do!!!
Sharon

[leapyrtwins]

Sharon -

if you put "Jho" in the search box (left top of your screen) you'll find a few posts about him.

I didn't read them, but from what I gather he does endoscopic surgery.

Jan

[CHD63]

Sharon .....

First of all, I came across a site that seemed intriguing, for the Jho Institute in Pittsburgh.  Has anyone gone there?  He doesn't use brain retractors, which would appear to be a good thing.  Maybe.   http://drjho.com/acoustic_neuroma_surgery.htm  The less action around my brain the better.

Second, my neurosurgeon said that if I had my retrosigmoid surgery in early August, I'd be ready for a trip to England by Sept. 15.  I have my plane tickets already and have rented a cottage for a week in the Cotswolds.  I plan to do a lot of walking.  Sound possible?  I'm 67 but pretty active.  Not one of the super-fit runner/hiker types, but I walk a lot and am not terribly overweight.  Well, maybe a little.  Hey, I go to Curves!

I really do not know anything about the Jho Institute.  However I do know that successful AN surgery, whether it be retrosigmoid approach or otherwise, is directly connected to the skill of the neurosurgeon ..... as well as the location, size, and shape of your particular tumor.  This is why you will see those of us posties regularly stressing seeking out the most experienced and most successful surgeon you can find.  I don't think using brain retractors is necessarily a bad thing unless used poorly.

I had an extremely successful retrosigmoid surgery at Duke ..... retained 20% of my hearing and have manageable balance issues (mainly due to surgeries on both sides).

As for the trip to England, many of us were nearly back to "normal" six weeks post-op, with the exception that most of us had varying degrees of hearing loss and varying degrees of balance issues.  Many had no balance issues by six weeks out .... except for occasional wonkyheadedness.  Are you going alone on this trip or will someone be with you whenever you are out walking?  My husband and I went to the Cotswolds 7 years ago (pre my AN diagnosis) and September would be a gorgeous time to visit there so I would hate for you to have to miss it.  To be realistic, however, you need to keep in mind that you could have some bumps in the road to recovery, which could extend your recovery time beyond the typical six weeks.

I'd love to go back to the Cotswolds and I think I could really enjoy it now ..... not sure I was quite ready six weeks out, but as we have said frequently, everyone's recovery and recovery time is unique.

Clarice

[sgerrard]

I hate it when stuff gangs aglee.   

I have heard of Dr. Jho, he does a kind of endocscopic surgery, although I think he uses the endoscope only to see, and uses regular microsurgery tools. No retraction is a good thing. I don't actually know about his success rates, but I sort of assume they are good.

There is a perfectly reasonable chance that you would be ready for a walking tour of the Cotswolds by mid September. You might still feel some fatigue and wobbliness, so you might have to scale back on the amount of walking, but so what. It would be a great way to continue your recovery and move on with living. If worse came to worse, could you reschedule the vacation?

Hope it works out well.

Steve

[sharonov]

Thanks all,
Jan, the first thing I did was a search of this site, but didn't come up with much.  I was hoping someone had had some experience with Dr. Jho, but it's not really that important since I've already decided on the two (or maybe three) docs I'll consult for my second/third/fourth opinions, namely Battista, Ganz and maybe Chang.

Steve, since my meds have been working pretty well for the Trigeminal Neuralgia for the past few days, I think I'll postpone the surgery.  In fact, after reading extensively about the possible side effects of retro-sigmoid, I'll postpone it as long as possible.  While you and Jan had good results, the survey on this site shows a very high percentage of dire possibilities.  So, unless my pain becomes intractable or unless the three docs above say that surgery is absolutely imperative for my wello-being, the trip is on and the surgery is off. 

See you all at the convention.  It's right down the street where I live.  Hmmm...........seems like a good title for a song!
Sharon