Dr. Tamargo at JHU vx. Dr. Al_Mefty in Boston- decision time

[jbenn]

Hi all,
I have now had two consults one with Dr.s Tamargo and Niparko at JHU and one with Dr. Al-Mefty in Boston.  They both seem to have strong points. My concern with Dr. Al-Mefty is the two day hospital stay.  Does anyone feel ready to go after two days??  That would seem amazing to me!  Also he does a CT angiogram prior to surgery which JHU said was absurd." He obviously doesn't do many AN's or isn't up to date".  I chose not to tell them who "He" was.  JHU on the other hand seemed abrupt and I didn't feel as comfortable with them, but their reputation appears to be very good.... and I work for JHU...
Any info/experience with either or insight in the decision making process would be greatly appreciated...

[grega]

Hi jbenn!  First ... you've come to the right place for support .... and yes, advice .... to assist you with your decision-making.  This forum has helped so many others.

A two-day hospital stay seems totally out of the ordinary.  I, and probably most others herein, have never heard that prognosis.

So I would like to add a suggestion for you to consider on your way to a place in time when you are comfortable with your choice.  I only have experience with Hopkins, where my AN was removed 6 yrs ago this month.  Although the docs you mention were not my surgeons, my suggestion is to not be afraid to take your concerns to Dr. Henry Brem, head of neurosurgery there.  It's possible that Brem sent you to Drs. T & N, as he's done with other cases.  I think you should not stop asking questions and/or discussing your concerns until the time when you are satisfied with your selection.

Best to you!
Greg

[james e]

I was in three days including the surgery. I would have gone home after two days, but they made me stay. There is no rhyme or reason why or how people feel after a surgery. I was in surgery 10 hours and was up walking while in intensive care and had a full breakfast just 12 hours after the surgery. I just count myself lucky. I really wanted to go home. I was in excellent physical shape, and I endured the rigors of the surgery very well. I'm no tough guy...just lucked out. Two days is probably pretty soon to leave, but YOU are the one to decide if you go home. All you will want to do is sleep and relax, and you can do that at home, but if you have some type of problem following the surgery, you need to be in the hospital. You'll know when you ready. Good luck to you.

[jerseygirl]

Hi,

I had angiogram in 1988 right before my first surgery (unfortunately!). Besides being an unpleasant and risky procedure, it also exposes a patient to large amounts of radiation. It was done partially because MRIs were not as precise as now, gadoinium contrast was not invented yet and ANs discovered then were huge and thus contained a lot of blood vessels in them. Now a plain MRI with contrast will give so much information to a neurosurgeon, that  it makes angiogram expensive and unnecessary. In addition, there is MRA which is easier than angiogram but is also not done for ANs. I have been around asking for consultations for surgery No.2, but nobody now does angiogram. I have also heard it called "absurd".

I believe MeiMei and Nikki had Dr. Tamargo. They can tell you more about their experience. They do suffer from intractable headaches. Somebody who had them for 10 years after the first surgery, I can tell you that they are not the kind you can take an aspirin for and they absolutely ruin your life. If you plan to go with Dr. Tamargo, you would be well advised to ask him what he can do to prevent those headaches from happening.
               
                 Eve

[kareno]

Hi jbenn:

It is very hard to make the decision but when you do it is a feeling of relief because you have a plan.  Since you came to Boston I had to reply to you and ask if you would consider a third opinion and see Dr. Carl Heilman from Tufts Medical Center Boston.  He removed a 3 cm from my husband 6 months ago with no incidence he was not able to save his hearing.  We offer the highest praise and respect for him and his team as he has removed many,many AN's.  The advice I can offer and I am sure you have heard this before is make sure your doctor and his team are EXPERIENCED in removing AN's and that they take the time and answer all of your questions.  You are in my thoughts and prayers and I wish you all the best. 

p.s. He was out of the hospital in three days.

Karen

[kaitysmom]

I'd be interested to hear what you decide. I am due to have my AN removed by Dr. Tamargo next week on the 11th.  I found Dr. Tamargo to be quite matter of fact but no where did I find him to be abrupt.  Perhaps that was just a bad day.  He was very kind and answered all my questions, even those I considered silly.  My AN is around 17mm, at least that's what the MRI showed back in May.  Who knows how big it is today.  Right now, I've got no real symptoms other than hearing deterioration.  I am concerned about the possibility of headaches though.  Dr. Tamargo mentioned I might get them and they would like go away with time that no one would be able to specify a date they go away.

I wish you well on your decision. 

Jody

[staypoz]

The docs at Hopkins are among the best anywhere.  For some surgeries they do prefer the retrosigmoid approach, which seems to have a higher incidence of post-op headache.  I was operated on there and have suffered from headaches since then, but many other people have had the same surgery there with no problems.  It would be great if the medical community could definitively say what causes the headaches, figure out who is more likely to suffer from them, and develop treatments for those who develop them.  In the meantime, if you choose to go to Hopkins, you can be assured you are in very capable hands.  And the nurses are fabulous. 

staypoz

[Mei Mei]

Yes, the nurses are fabulous, but the follow up care for the headaches leave a lot to be desired.   I am on my own to find my solutions.   I found the Headache Clinic at Hopkins to be of no help and am going to Washington Hospital Center Pain Clinic for a 4th nerve block on Nov. 23.   You can follow my posts on Johns Hopkins Surgery Date Jan 12 in the Pre-Treatment Section.   If I had it to do over again I wouldn't have a Retrosigmoid surgery.   My tumor was small and there is research out there that people that have small tumors taken out suffer from Post Surgical Headaches.   The University of Maryland and HEI (which you told me isn't covered by your insurance) recommended a Middle Fossa approach.   At the time I didn't know the difference.   I think Capt. Deb went to HEI and had Middle Fossa surgery if I remember correctly and of course we all know she suffers from Headaches.   I suppose it's all very individual.   I think Jim Scott went to Yale and doesn't suffer from headaches.  He said his surgeon took careful steps and I don't know if Dr. T did the same precautions that Jim Scott's doctor did at Yale.   You might want to take a trip to Yale.   My other opinion was at NY Hospital with Dr. Selesnick who suggested Middle Fossa.   There are people on the Forum that have gone to Shands in Florida and you live there.   I think Lawmama went there and you could contact her about her experiences at Shands.

Whenever I write to Dr. Niparko, I get a return email from a nurse and not from the doctor himself.    On my followup he was encouraging me to schedule for the BAHA and I had told the resident before his coming in that I wasn't interested in the BAHA because I was still suffering from headaches.   She whispered to him that I wasn't interested in the BAHA and he nodded and excused himself politely wishing me well.   Dr. T. said back in Feb. that I should have headaches for only two weeks and to take Motrin four times a day and that they shouldn't be a problem.  He also wouldn't extend my leave from work or consider signing disability papers (he wants his statistics to show that patients go back to work right away).   I had to get my primary care to sign my leave and disability papers.  I think Nicky had the same situation.  He did return phone calls and referred me to the useless Hopkins Headache Clinic that said I had rebound headaches and to stop taking Alleve and Tylenol cold turkey and come back in six weeks.   My private neurologist doesn't agree.  So in sum, my follow up experience was not a good one and thank goodness I know enough to seek out care on my own.   My argument is that there should be a pain specialist as part of every AN Team and there isn't.   It's a major problem that's talked about repeatedly on this Forum.

One good thing is that they kept me for six days in the hospital and made sure I did well with OT and PT and Speech before I was discharged.   That I always will be thankful for.

My prayers are with you in this important decision and I wish you well in your surgery and recovery!
Sincerely,
Mei Mei

[Lizard]

It would be great if the medical community could definitively say what causes the headaches, figure out who is more likely to suffer from them, and develop treatments for those who develop them. 

staypoz

Amen!


Good luck with your decision, sounds like you have consulted with 2 very capable teams!  Please keep us posted...
Liz

[superrmaren]

I don't know if you've made your decision yet - i just read this - but Tamargo is awesome!  I had my AN surgery w him a little over 4 years ago and just had a check-up yesterday.  He's smart, kind, well-versed, experienced, and skillful.  Plus, I am a nurse at Johns Hopkins neurosurgery in-patient now, so I work with him!  From that side, he is great, too!  He is the best at it for ANs at Hopkins - which happens to be the #1 hospital and #1 for neurology/neurosciences!  I cannot recommend him highly enough, speaking as both a patient and a professional.  If you come to Hopkins and are on Meyer 9, ask for me - Maren
(and no headaches here)

[Nickittynic]

I guess with any doctor or hospital there's going to be good experiences and not so good.

Dr Tamargo did my surgery a little over a year ago and while I certainly admire his skill at surgery time, I didn't have such a good experience post op. In the one post op appointment I had with him it was very quick and none of my concerns were addressed. The other providers I saw frequently (therapists and general practitioner) had a hard time working with him to get orders/notes for things they evaluated me as needing. Work disability became a nightmare because of all that.

I was told pre-op by Dr T that I would have a 1 in 3 chance of chronic migraines. I thought at the time that that was because of my tumor size and position, but I wonder now if I would have had better chances somewhere else. I go to University of MD (where I work, so it's better insurance-wise for me anyway) now for follow up care, including the headache clinic there.

On a day like today where it's raining out and my head is pounding, I wish I had shopped around some more. 

[Mei Mei]

I agree with Nicole and my post op experiences were similar.   He dismissed my headache problems as minimal concerns that would only go on for two more weeks.   He didn't address the disability issue that I had and went to my primary care to help with the filing which I was successful with after two months, no thanks to Dr. T.   The rationale for this I read elsewhere on the thread was that he wants his postop. stats. to look good.   Doctors want to look good and make their careers do well.   Dr. Niparko also didn't want to talk with me much once the resident had indicated I wasn't interested in BAHA because of the headaches.   That's all he wanted to talk about.

The good thing is that I liked the nursing care at the hospital.   I still wished that I had made a change on gone out to HEI where I told Scott to go and he is doing sort of fine and back to work already after a Sept 14 surgery.   I might have done better with the Middle Fossa that HEI was recommending and if I remember correctly so was Maryland and Cornell-Weill in NY.   Had I known then that retrosigmoid is higher risk for such horrific headaches, I would have cancelled the surgery.   The issue of postop headaches never came up and I didn't know to ask.  I thought Hopkins was a reputable hospital but my problem with them that HEI doesn't have is that from every patient I have met locally and on the Forum, all of them were retrosigmoid approach.  It also too a couple of months to get on the surgery schedule and by then I think my tumor grew because my eyes were starting to have symptoms of twitching in the last week and the small 1cm tumor in November was in January sticky and hard for Dr. T. to get out.  The resident came in and told me he had to tug at it for a long time and it was tense.   I think that must have been when I lost my hearing.   I only had a 35 dB loss prior to surgery.

Today I saw an OD for cervical and cranial manipulations.   Next week I see a pain specialist on Monday and on Tuesday I'm scheduled for the O.R. for another nerve block.   The follow up care is all planned by me and my own wits.   No followup help is coming from Dr. T and Dr. N. even though my primary care said to go back to them, it was quite obvious I was getting nowhere with them for followup.

Good luck with your decisions and I hope you come out healthy with this situation.   Like many of us on the website, I don't think I will ever be the same after this surgery.   I hope you will be OK after your surgery wherever you decide to go.

Sincerely,
Mei Mei   

[grega]

Hi all ..... nice to realize that many from this area participate in this forum.

I also had retrosigmoid at Hopkins, 6 yrs ago .... in Meyer 7, Maren, so say hi to Dr. Brem's nurse Eilene Bohan for me, if ya see her.  I have not suffered headaches.  I agree that everyone is diff, and retrosig doesn't necessarily cause them.  But I send a sincere wish out to all who do suffer that you may be pain-free.

FYI .... this thread in the "ANA Community" area gives info on local support group mtg in a few weeks.
BALTIMORE, MARYLAND - SUPPORT GROUP MEETING - SAVE THE DATE! DEC 11, 2010

Greg

[kaitysmom]

Hi all

Dr. Tamargo removed my tumor last Thursday here at Hopkins.  I've had no headaches or pain.  I'm now taking tylenol only at night because my neck is sore from the incision.  I am still here but due to swallowing problems.  The tumor damaged some of my swallowing muscles along with the fact my tongue was bruised during surgery. 

The doctors, nurses, techs and Pt folks get an A.  I can't say enough good things. 

I just want to be home by Thanksgiving.  I can walk backwards, side to side and can do stairs now. 

Jody

[elderbirds]

I'm a little late to chime in here but I too had surgery at Hopkins 2 1/2 years ago (with another set of surgeons), I was concerned about post op headaches but was reassured they have improved techniques and headaches weren't as big an issue.  I am happy to say I have never had a day of pain.
Hope