Author Topic: John Hopkins  (Read 6017 times)

Polina

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John Hopkins
« on: December 03, 2014, 03:36:08 pm »
Hi,

I was diagnose with AN (11 x 7 ) couple weeks ago. I am trying to make up my mind regarding my further treatment.
Can anyone had good or bad experience at  John Hopkins (Baltimore) ?

Thanks a lot,

P.

RandomWalk

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Re: John Hopkins
« Reply #1 on: December 04, 2014, 11:03:20 am »
Hi Polina,

   I have a slightly larger AN than you. I had only temporary hearing loss and caught the AN on an MRI dealing with that. 2.5 years ago, I went to Hopkins for a consult - which required me to fly from my home near Chicago. I also consulted with several other nationwide clinics other posters frequently discuss - all of whom I though were good (This was almost certainly overkill - but I had just had a second child and was pretty freaked out).  In the end, I preferred Hopkins.

   I say Niparko and Tamargo.  I understand that Niparko has left, but I thought they were both excellent.  Both recommended watchful waiting. Of the doctors I saw, not everyone was as emphatic about WW... but they were. Years later, it's obvious to me that was the right choice. I really haven't had any problems.... Weeks go by now where I don't think about even having one of these things. I've had very minimal growth since then and I still have pretty decent hearing.

   I think there's a good chance I'll need the surgery someday. Even though Niparko has left (and I'm 800 miles away), I'd probably still do the procedure at Hopkins. Complications during surgery are extremely extremely rare - but god forbid something happened, you'd be at Johns Hopkins with immediate access to peerless medical talent.

   There are many excellent options for AN treatment. The posters to this forum have had positive experiences at several places... so I don't wish to claim any is superior. The honest answer is that lacking any empirical evidence, we can't really say if one place is "better" than an other. I'm only sharing my experience - and perhaps it will be helpful to you and others.

RandomWalk

raji83

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Re: John Hopkins
« Reply #2 on: December 04, 2014, 12:49:12 pm »
Have heard good things about Dr.Tamargo. I dint have my procedure there because i wanted translab and Doc was planning retrosigmoid so i had to pass on him but otherwise till today i find him the most confident surgeon i have met.

CHD63

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Re: John Hopkins
« Reply #3 on: December 04, 2014, 04:26:13 pm »
Polina .....

If you see this reply to your post ..... I just tried replying to your private message and it said your Inbox is full.  Try deleting some messages you do not need and message me again.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: John Hopkins
« Reply #4 on: December 13, 2014, 09:53:21 am »
Hello Polina.      We all vary in how surgery and recovery goes.     Some depends on what damage the tumor has had on the nerves and its location.        This is not fun to have the surgery but after the first couple days we do ok and go thru the time to recover.      Fatigue for a time is a major thing we go thru.      The balance varies how it bothers us.     I was never dizzy which many are for a time.    The balance feeling off is different than dizziness and varies with each of us in how the brain compensates for the loss of the one balance nerve.     Getting up and walking helps.  Some do vestibular therapy also.      The hearing loss is an adjustment and how we each deal with that varies,     Facial issues can be temporary and do not affect many.              Not all people have headaches beyond the immediate recovery time.        One can read on here of people with post op problems.  Many who are on here for a short time do well and do leave and back to their usual lives but with some adjustment esp with the hearing loss on the one side, know as the SSD.             It is frustrating to not be able to know exactly how one may be  after surgery.   But once one knows than one can live with it if temporary or adjust if is permanent.             The time prior to surgery is scary but we are here to be of help too.                     I am unable to answer your other questions.          The U Penn has been talked about here over time with some who have went there.
                  I wish you well.                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Cheryl R

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Re: John Hopkins
« Reply #5 on: December 13, 2014, 09:55:12 am »
Ok I just realized it was not U Penn that you mentioned.       Many have went to Johns Hopkins too on here.
                                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

BLH

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Re: John Hopkins
« Reply #6 on: December 18, 2014, 03:03:46 pm »
Hi Polina:
I had 2 surgeries  (Oct, Nov 2014) and Drs. Lim and Limb were my physicians. If one can have a "wonderful" experience in surgery, then I did, even though some parts were tough.

I had a large AN removed in October and a CSF leak repaired in Nov. (which I probably caused, when I banged my head hard). Although it's obviously early on, I can't say enough good things about the two. Not just expert at what they do but incredibly soothing, patient, and attentive.

(Personally, I had no problem with it being a teaching hospital and frankly liked that in addition to my doctors I could call on residents and team members when I had questions. There was someone available around-the-clock, even when my doctors were in surgery.)

Drs. Lim and Limb are incredibly busy. But I will say this: When I needed them--for instance, after I banged my head and had a series of vicious headaches and went to my local hospital--they were there for me. Dr. Lim phoned me himself and urged me to consider returning to JH so he and Dr. Limb could be sure the leak he and the local doctors ID'd through CAT scans and an MRI was treated properly. My other option was going to a nearby metropolitan hospital and having their surgeons do it. He was willing to phone colleagues there, if that's what I wanted. But I'm really glad I went back to JH. These are surgeons who care immensely about their patients.)

My understanding is that Lim and Limb did the AN surgery, were assisted by the others. Dr. Limb was the lead on the CSF surgery b/c (as Dr. Lim told me) that particular surgery is his area of expertise. But Dr. Lim was there too. The two seem to work as a team regularly and obviously have high regard for each other.

Given that my 1st surgery lasted 12 hours, I assumed Dr. Michael Lim could not do every single thing, but I know he was there. The actual removal of what proved to be a large and resistant tumor Dr. Lim did himself. Dr. Charles Limb came out at one point to reassure my husband that, even though my surgery was harder/longer than anticipated, it was going well.

I hope it eases your mind to learn that my only major post-op headaches were related directly to my CSF leak (the 1st one started seconds after I banged my head on a hard edge in a sensitive place). They have not returned since the surgery to repair the CSF leak. Two days after the AN surgery, I needed no pain killers. After the CSF surgery, I took the occasional Tylenol (maybe 1-2 every few days, as needed, none after 2 weeks). You migth have headaches of course--but I just want you to know they are not inevitable.

In other words: Everyone's different. I found some "helpful" advice I got before surgery to be less-than-helpful. For instance,  I was told certain things would happen. For instance, a couple people told me I wouldn't be able to stand upright on my own in a shower for months--and I was doing so within 8 days of the AN surgery. I was advised to be prepared to be on all sorts of prescription medicines for months to come. Within 4 weeks I was on nothing.

While brain surgery was no fun, I would only describe the first week as "an ordeal." The first 48 hours were rough--Dr. Lim told me it would be. (Not so much b/c of pain, which is well managed, but because I was weak and also connected to the IV and catheter, things like that.)

After the first 2 weeks my recovery was steady and noticeable. Now, two months out, while I'm not 100% healed I now believe things will eventually get back to normal, or close to it. Just this week I've gone back to work, have started driving. I still need to do vestibular exercises, but I don't fall (never did: another thing one person told me would happen).

That's not to say that others' advice was not useful--for instance the advice to bring something very loose to wear while leaving the hospital. The steroids I was on the first 2 weeks post-op made my stomach swell. It would've been impossible to zip up my normal clothes, but I was prepared for this, thanks to advice from other AN patients.

Then there were some things no one warned me about (I didn't know about these forums until recently so maybe it's mentioned here somewhere). For instance, for whatever reason, I couldn't swallow for the first 6 days after surgery. (Soon though I could deal with mushy foods. Three weeks out, all my swallowing ability returned.)

I guess what I'm trying to say is, while it's useful to be prepared for what might happen-- I'm glad I had a shower chair at home waiting, even if I didn't need it--things really could be easier for you than they have been for others. But some things could be harder. It's so hard to know.

The great thing for me, being at Johns Hopkins, is that they were prepared for all outcomes and I got help right away to deal with the hard stuff (like the swallowing: When the idea of being tube-fed upset me, they worked with me to devise a way to get enough mushy foods down so I could avoid it).

In general, the nurses, the staff and the doctors were upbeat as well as knowledgable; that made a big difference in my experience. They knew what to do when I needed help. They were happy when things went well for me, and encouraged me to assume things would be fine.

Not sure if any of this is helpful to you. But I'd be happy to tell you more about my JH experience if it'll be useful.



Polina

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Re: John Hopkins
« Reply #7 on: December 19, 2014, 09:55:40 pm »
Hi ,

Thank you so much for your thoughtful and detailed email. It is very helpful to me to hear about your experience and it gives me hope. I do have a few more questions for you. Hope that's ok.
Did you do retrosig or translab approach? Did you have any tinnitus before surgery, or after surgery?
Did you have any hearing left before surgery? after surgery? Did they remove everything? Did they save your facial nerve? How long did you stay in JH first time?
Thanks again. I wish you all the best!

Polina.

kmr1969

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Re: John Hopkins
« Reply #8 on: January 20, 2015, 05:54:08 pm »
Polina,

I'm from Baltimore and JH was my first appt after I had been diagnosed with my AN. I met with Dr. Weingart there after my ENT referred me to Dr. Francis.  This was back in the summer of 2012.

I felt comfortable with Dr. Weingart and less so with Dr. Francis.  My wife had the exact opposite reaction.

I choose House Clinic for my surgery for two reasons: experience of the surgeons and their perspective on getting it all or not getting it all.

JH's perspective seemed to be that this was a serious surgery and that if you were going to do it then they were going to get all of the tumor even if that meant some damage to your facial nerves.  Obviously, they weren't going to intentionally do any damage but I got the feeling that if given the choice between getting it all and doing some damage to my facial nerve vs getting almost all of it and leaving a scrap to protect my facial nerve, then they were going to get it all.

House's perspective was very much different.  They wanted to get it all, but if they thought the risk of facial damage outweighed the chance of getting it all, then they would leave a scrap of the tumor behind.  Which is what happened in my case.

Do I wish 100% of the tumor was gone instead of 95%? Yes, but I'm also glad that I don't have any real visual facial damage.

Make sure you understand your doctor's philosophy on this issue - get it all or don't get it all.

Also, you may want to do a consult with University of Maryland Medical Center which is also in downtown Baltimore.

It was a tough decision to fly away from Baltimore and JH to go to House in California, but it was worth it for me.

You may also want to send your MRI to House for a free consultation with one of their surgeons.

Good luck.  You will be in good hands at JH but just make sure it is the BEST place for you.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

pommie1

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Re: John Hopkins
« Reply #9 on: January 21, 2015, 01:22:27 pm »
Hi Polina,
I have an APPT at JH next week with Dr Tamargo for a 2nd option - am seeing a DR. At Georgetown Hospital.
My AN is 8MM and has stayed stable for past  4 months  - only diagnosed last August.  I do have already hearing loss in the AN ear but no other symptoms.

If you want I can provide an update afterwards...
thanks