Author Topic: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY  (Read 4693 times)

Kaye

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BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« on: March 27, 2007, 08:11:07 am »
LOng story short - my spouse had an surgery in 2000, after long recovery, facial paralysis, dry eye, loss of balance, etc.  Now, his symptoms/complications have deteriorated to a point where he's just so depressed and it's actually scary to listen to him each day.  The problems are, aside from deafness in right ear, balance issues, numbness on entire right side of face.  He says the, "FULLNESS",  "Pressure" in his head (the top and specifically toward right side is getting much worse.  He claims that if he cups his hands over top of head and pushes down it seems to relieve a bit - - says it's getting much, much worse.   :'(  I just down't know what to do.   He had the usual follow up MRI with a Neurologist in NYC (he was not involved in or with issue prior to our seeking out after surgery).   His most recent MRI in Dec. - shows no sign of tumor.   MD says - - just learn to live with it! ???  Joe is so depressed he says, "you don't know what I go through every day - it's a chore just to get up and walk around".  I'm really for help and suggestions for the best Neurologist in our area Southern New Jersey,  or for that matter the country.   I'll go anywhere to help him.   He really is at his wits end!     Thanks for listening and, hopefully, help
Joe and Kaye

Evan

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #1 on: March 27, 2007, 04:21:37 pm »
Before anyone can attempt to answer your question, I guess we have to know where the surgery was done in the first place.  I see that you live in Barnegat NJ, down the shore, so I am unclear whether you went to Phila or NY or someplace else.  As you know from this site, there are many excellent doctors in New York.  I have seen a few to diagnose what no one seems to know I have.  Others have seen and have recommended others in New York.  I guess as a start, I will list some names of the docs in New York who have great reputations for treating AN's.

Drs. Roland and Golfinos at NYU.

Dr. Michael Sisti at Columbia Pres.

Ds Sen and Costantino at Roosevelt Hospital (Cranial Base Surgery Center).

Dr. Selesnick (I think at Sloan).

I am not sure whether you have heard of any of these or possibly even seen any of them.  But these are names that are the big names in NYC. There may be others, but I think this is a good start.

Good luck.

Evan
1.5 cm x 1 cm x .5 cm/Diagnosed March 8/AN Right Side as per MRI/Upon further review, docs do not know what it is.  Could be Facial neuroma/could be nothing.  Repeat MRI in 6 weeks.

Hip

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #2 on: January 02, 2008, 09:50:49 am »
After my surgery in August 2007, I had all the physical after effects that your husband has (except mine are on the left side).  The dry eye is still there but I use Genteal gel throughout the day to keep it moist.  The balance issues were fixed after 20 times with a PT who specializes in vestibular treatments (and inumerous times doing the exercises on my own at home).  I have regained some of my facial movement though I do not expect to be or look normal again unless I try cosmetic surgery or accupunture.  The "fulless" pressure in my head probably will stay and I don't know what could be done.  I will probably try listening to classical music to forget about it.  My deafness will go away once I have a bone-anchored hearing aid installed at the base of my skull (surgery date to be determined after my consultation with my ENT surgon and my neurosurgeon in April this year). 

The best neurosurgeon in the country is Doctor Rafael Tamargo at Johns Hopkins University in Baltimore, MD.  He has removed close to 400 AN so far without any complications or mortality.  He was also one of the main surgeons who succesfully removed 2 Siamese twins who were attached to each other at the head.  You could look him up at the Johns Hopkins website.

I alo have had emotional after effects.  I am now very impatient and hot-tempered.  I also have the tendency to use foul languages and to speak my mind.  I am thinking about seeing a psychologist and to attend more support groups's meetings to see if there is something they could do to change me back to my old self (my family is trying very hard to cope with my behavioral changes.  I can see the stress on my wife's face these days). 

The only thing I could advise your husband is to contact a local support group and to attend its meetings since they are times when he could talk to people who went though the same experiences and who had or still have the same issues.   Please ask your family members and friends to be patient with and supportive for him as he is going through a  lot.

Hip

ppearl214

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #3 on: January 02, 2008, 10:05:58 am »
Hi Hip and thanks for sharing this with us. I do hope 2008 will bring you happiness... and wellness... you have certainly had your fill......

As we know, there are many qualified AN neurosurgeons around the States.... many here will attest to HEI in CA... many will attest to MGH in Boston... many will attest to Moffit in FL, Sanford in N. Ca, etc etc etc..... what we try to note is research, research, research.  Comfort level, location, experience, insurance coverages, etc are just some things that folks should keep in mind when researching a potential AN surgeon. I have faith in folks here to ask questions as they do.... take advantage of phone calls and emails to inquire about those that have been through treatments (microsurgery, radio-surgery/radiation, etc).  It's a highly personal choice and many factors to be considered ..... it's good to know that your team is definately top of the line... as are many other AN neurosurgeons across the country.  We are a tricky "lot" to handle (our AN's) and that is what I love about this discussion forum... all options, opinions, etc, shared by all so those researching can make the best informed decision they can for themselves.

Hang in there Hip.... I do hope 2008 is much better and onward/upward to continued wellness.

Phyl
« Last Edit: January 02, 2008, 10:08:27 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

4cm in Pacific Northwest

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #4 on: February 27, 2008, 02:08:54 pm »
OK I am reading this post - months later… but to me it has so much relevance.

One thing that is very evident to me is that some surgeons are better than others at providing post surgery follow up and support.

Over a decade ago -the main concern with AN treatment was mortality. Improvements in science and medical procedures have nipped-that-one-in-the-bud and now the mortality rate is very low with Acoustic Neuroma tumors. More now are concerns with the morbidity… particularly post surgery (or Radiation treatment)

Some surgeons have the attitude that,
                      “You should just be thankful to be alive and you should be thanking me for your being here today…â€?
(They are still living in the 1960’s- 80’s.  i.e. they only acknowledging the mortality issues of medical treatment)  Other surgeons  truly identify that life is not the same after the surgery (i.e. they acknowledge the morbidity) and try to refer you to specialists: vestibular therapy clinic, nuero-muscular retraining therapist or ophthalmologists etc. I am amazed how many surgeons have very little networking or connections made with therapists (or other specialists) to refer their patients to- as they neglect to understand the importance of partnerships and the team approach to healthcare.

I do not know what we as the ANA can do to encourage more accountability of the surgeons during the “post surgery� (i.e. beyond hospital discharge) follow-up but it is very clear to me that their responsibility should not stop once the last MRI says “the tumor is gone�. There are well documented residuals that linger long after surgery.

Kaye,

The key thing I am seeing, particularly here in the USA, is the best advocate for the patient is ‘the patient’ (or their close loving family and/or partner). If your husband is not getting support from the physicians (neurotologist, neurologist, PCP etc) you have involved in his case – then moving onto someone who will help him might be the best thing to do… I think you are stepping in the right direction here.


Your reaching out to other patients who have understanding of what it is like to go through all this - IS a step in the right direction. Try to encourage Joe to get on and write for himself… I tell you he will find a very caring and supportive group of people who can offer some insight, often web links to look at ….if not even names of therapists; vestibular clinic, facial therapy clinics or even counseling therapists. The key is your husband needs someone to basically say,

“I empathize with your problem and this IS difficult for you.  I know you are NOT making it up or NO you are NOT a hypochondriac … let’s try to identify what your problems are exactly …and see what we can do to find some solutions.â€?

I would have thought speaking to a neurologist (who can examine the brain and cranial nerves in more depth) would have been helpful too. I am disappointed to read that this was not helpful… being that I too was thinking of consulting with a neurologist.

My biggest issues are sleep related. I was very hesitant to start taking sleeping pills (as my PCP suggested I do) and try to focus on “the causeâ€? – rather than band-aid the problem with pharmaceuticals.  I knew some of my frustrations and symptoms were much due to sleep deprivation. Now that I understand that brainstem (the sleep controller of the brain) involvement and the VII and possibly XII cranial nerves were affected (i.e. tongue gagging in the night) with my tumor. Now I have a better understanding as to ‘why’ I was not sleeping. (When we do not sleep well everything is out of balance) I sent my  MRI & MRA’s to a sleep doctor (a pulmonary specialist – not a “nueroâ€? doctor) … and he and I put things together to understand the bigger picture. We do not know the exact cause but we can make some educated guess and try to work from there. WE may not have solved the sleep disorder completely but we have put together some coping mechanism that does not create dependency on pharmaceuticals. But you know it was neither my PCP nor my nuero-doctors who initiated this – it was actually me insisting on seeing more specialists to get a better understanding of the bigger picture.

When one does not understand “why’ they are having issues and symptoms they feel powerless. I knew something was NOT ok with me- pre AN diagnoses. I sought help for many years with vertigo and tinnitus symptoms … and sometimes being unexplainably accident prone. I was starting to get rather depressed about being treated like a hypochondriac by a medical professional. My PCP, at the time, even suggested I see a “stress therapistâ€?.  I finally switched doctors. The long overdue ENT referral finally happened and there it was on a MRI - my 4 cm whopper. Suddenly everything started to make sense: ringing in the ears, fatigue, accident prone due to vestibular issues, the hearing loss was NOT due to natural aging -after all. As the pieces of the puzzle suddenly fell into place I could now see and understand the bigger picture… and I did not feel so powerless anymore. Once a clear diagnose was found – and suddenly I was finally being listened to by medical professionals (and yes even family)… from there I felt less depressed as people finally started to understand and to try and help me.

Year’s back one family member told me,
 Ã¢â‚¬Å“It is all in your head- you are fine and just imagining thingsâ€?

 (Well they were half correct it was in my head alright – but I was not fine and NO I was not imagining things)

I am still having post op issues but rather than getting depressed and feeling powerless I am trying to understand the situation and as I learn more and more about neuroscience (actually incredibly interesting stuff!) I have better understanding of the problems and feel much less depressed and powerless about it.

It is important to maintain physical, mental and spiritual health in equal balance.

Spiritual
RE “Spiritual� -this ranges from feeling good after scaling to the top of a mountain to religious practices – each person has a different perspective as to what this is. Regardless your husband sounds like he is low in spirit at the moment. You are sounding like you are at your wits end as you do not know what to do for him anymore.

So far I have been to 2 ANA support group meetings.
#1
 The first one we a had a dear woman who was in tears as she is still trying to decided what to do with her untreated tumor. Another man was extremely anxious about having his follow up MRI done… as he was worried about the residual tumor left behind to preserve his facial nerve.

#2
In the second meeting the woman was so much stronger, displayed humor and seemed to have become empowered as she continues to gather information about how to treat her tumor and where to go. The man finally did have his follow up MRI (a few if us really implored him to do this at the #1 meeting)… his results were good. He got over his fears. In this second meeting he seemed so much more relaxed and appeared to have some peace in mind. I.e. the 1st meeting there was ‘tears and fears’ – at the second meeting there was ‘understanding and humor’ - as we informally learned to laugh at our own AN symptoms as a survival technique. I certainly came out of the 2nd meeting with higher spirits than when I went in.

Are you and your husband attending ANA support group meetings? I find it not only helpful to discuss issues in this internet forum but to also meet people who are geographically closer to me who can empathize with what I am going through… and teach me to have a sense of humor in dealing with this often overwhelming recovery.

Physical
Is your husband getting at least 40 minutes of good aerobic exercise a day (power walking, cycling, a sport or something)? If he has knee and/or joint issues try non-weight bearing exercise like a stationary bike or the swimming pool. There is plenty of evidence that physical fitness can be a great combater for depression. Not only does it get the ole blood circulating and cardiovascular system working it will also assist in the circulation of CSF and dura fluid.

Mental
Hopefully in addressing the above - the mental issues will improve. This AN recovery journey can at times be taxing- and hard to take if people around us are not understanding. (BTW Is Joe sleeping ok?) Some days I have moments of “mental scattered-nessâ€?. I started to journal this and came to realize this was directly related to the quality of sleep I had the night before. Once I started to address the sleep disorder and find some solutions- my mental alertness improved tenfold. So the AN was not so much the cause of sleep issues but was indirectly related due to the pressure that was once on the brainstem (which controls sleep), the involvement of VII cranial nerve (and possibly the XII nerve).  I also found that taking on mental challenges that were NOT so much depend on my ‘auditory skills’ (or now lack of) and achieving  at these - has really helped. I am learning to accept my new limitations and to work around them or to compensate through other means.

Yes there are major challenges to face post op and this, now doubt, was a life changing event.

Hugs to you both… I hope that you will have success in finding more understanding and compassionate physicians who are willing to work at identifying the problems and help you find some solutions. I hope through the ANA, in addition to the on-line discussion forum here, you both feel supported and can find some solutions.

Keep moving forward.

4
« Last Edit: February 27, 2008, 02:13:18 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

OMG16

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #5 on: February 27, 2008, 09:44:59 pm »
4 this is very good advice.  My son had a problem with his immune system when he was young, which he outgrew by the age of 13.  We belonged to the IDF and they started a campaign to educate the Drs in the US that was quite successful.  I was thinking since there are not that many qualified Drs to treat ANs that the ANA could possibly do something like this.  They could include brochures to be given to newly diagnosed patients directing them to the ANA forum.  Since this site can be to overwhelming to some patients they could also be given a brochure about treatment options and post op info and types of specialists needed for some of the rehab that is often needed but from what I am seeing patients are seldom getting other than from this site.  If the ANA needs people to work on this maybe it can be a team effort from all of us.  I know that even though I do not have personal experience with an AN I do understand the lack of education of Neurosurgeons and the need of patients for these resources.  Let me know what you think about this.  I would be honored to be involved.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

4cm in Pacific Northwest

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #6 on: February 28, 2008, 01:45:39 pm »
16,

The ANA already has some excellent packages that they give out. Two surgeons I interviewed, in California, are members of the ANA (and on the physicians list) and actually gave me ANA packages at our first meeting… alongside copies of their own research papers and publications.

Others I consulted with were not part of the ANA and one, here in Oregon,  actually openly “poo pooedâ€? the organization (I had big flags with him already and that was one of the cons on my 'pro’s and cons' list -when finally scratching him off )

I think if I remained in the same geographical location of either of these California surgeons I probably would have had better access to post op follow-up resources. However like many of the patients on this forum- I chose to go to only experienced and reputable surgeons-  who happened to be out-of-state.

My surgeon set me up to do follow-up with one of his former students who accepted a teaching position close to my home (working alongside the very surgeon I scratched off my list). Unfortunately this newly hired doctor has not been here long enough to have a good network of specialists he knows (i.e. vestibular therapy etc ) – however he made statements, to me ,that he felt that that vestibular therapy would not help and I will never be the same as I was pre-surgery- again. These are his own statements and thinking. I do not think he represents my surgeon (of whom I have highest respect and regard for- still)… and the bottom line is the follow-up physician does not have the experience and age of wisdom my own surgeon has… He was not a good replacement, for me, of my own surgeon. So for the next follow up I will fly back to see my own surgeon directly… and it is getting costly … but in him I have much more confidence.

The bottom line is many of us DO have to go out-of-state thus it is still important for a surgeon to build network lists of people he/she knows to be reputable… outside of there locale.

Others here in Oregon have gone to HEI (LA, CA) and had their follow up done at the Wilson Ear Clinic (WEI…Portland, OR) – as these two institutions appear to have a developed partnership. Dr Wilson was actually trained at House and is an old colleague of Brackmann’s. (I had a younger surgeon at WEI who was willing to do follow up for me “if� I chose HEI and Dr. Brackmann.) I was initially going to do this too but because I was an atypical case (i.e. there was doubt it was NOT an AN… but it was) - I went with a state-of-the-art high-tech university… for the “retrosigmoid� specifically. Thus the contacts they (Stanford team) only have for follow up therapy- are other ‘universities’ not private therapists (facial, vestibular, etc.) The university here is very limited (i.e. no vestibular or facial retraining clinics). In my case I feel that my surgeon really did his best to set me up, back home, but perhaps was not aware how lacking in resources the university here actually is. (My experiences at Stanford and the University hospital here -were like night and day. I truly wish I was living closer to Stanford during this recovery phase. In our last local ANA support meeting of about a dozen people- well over the majority chose to go out-of-state for their treatment… To me that speaks volumes.)

SO where does the ANA come in. I think we need to start make regional lists of resources (therapists: facial & vestibular, trans-ear fitters etc) that can be shared amongst members. Not endorsements – just a “resources contact list�. Basically here it is a month of me searching and following various dead-end leads- and I still have not found one neuro- muscular facial retraining therapist within the greater Metropolitan Area of Portland.

Newbie’s still deciding on surgeons need to ask, “What sort of follow up is provided after surgery?â€? I knew that this was a weakness with the Oregon surgeons, based on my interview with them, so I chose not to go with them and adding that problem  to my list of “consâ€?. Unfortunately I still got stuck with the lack of follow-up resources- just by residing here.

Obviously we need a list not just for Portland but for the Pacific Northwest Region… Thus I am suggesting regional resources list complied by ANA members. I can’t be the only one in this boat- i.e. lack of post-surgery follow up therapy resources.

Moving forward…

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

ppearl214

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Re: BEST MD FOR COMPLICATIONS AFTER BOTCHED AN SURGERY
« Reply #7 on: February 28, 2008, 05:12:23 pm »
Hi 4,

funny you note this... there has been off-the-cuff discussions in the wayyyyyy past about doing "regional" and decided that anything regional, for posting here, would go in "AN Community" (hence, the NE brunch thread, other regional mtg threads, etc).  If there is enough interest (if you want to poll, pls do in AN Community), will see what interest is there.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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