ANA Discussion Forum
General Category => AN Issues => Topic started by: robynabc on May 11, 2007, 08:13:29 pm
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I can talk about this much. My son has a large tumor. He has no hearing loss at all but we went in because he had numbness on his mouth. THe MRI shows a large. 4.5 x 3x 3 tumor. THey could not believe he had no hearing loss and no other symptoms. I am not ready to talk about this much because we have not seen the surgeon. My question is- our ENT is sending us to a doctor- Here he is.
http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html
According to her he has done the most schwannomas in the country. From reading on this sight that is most important. Has anyone heard of him? Thanks in advance for the info.
I am afraid of hearing any horror stories becuase he is so young. I am for the most part staying pretty positive and don't want to change that right now.
Thanks,
http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html
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Hello Robynabc,
I'm so sorry to hear about your son. Last June my 17 year old daughter, 5 days before graduation, was diagnosed with a large AN. It's a very scary time but you are right in having a positive attitude. I'm not aware of the surgeon that you've mentioned. Chelsea went to UCLA and although she had many complications I felt she was in the best of care and now 10 months later she is doing great.
Please know that this is a wonderful place to come for support and information. My thoughts and prayers are with you.
All My Best........Michelle
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My son is supposed to graduate in 3 weeks. He may miss graduation. Thank you so much for your post, I am glad to hear that he is not alone in being so young with this. But I am not glad she had it too. Thanks again.
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Hi Again,
You might be suprized about him getting to graduate with his class. Chelsea surgeon agreed to let her walk with her class and was going to do the surgery June 30th but her legs went weak and she fell just 2 days after graduation. She was admitted that day. I would at least ask to see if he could walk with his class. All her doc's felt that this was too important for a her to miss out on and were sure she would be OK.
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Hi Robyn and welcome. I'm sorry to hear you all are going through this journey, but I have to admit... you really found a terrific support network here, esp. in the case of Michelle/Chelsea. This past year, we have traveled the journey with 3 younger folks (ok, younger than me!) between the ages of approx 17 to 25 and we cheer everyone on as loud as we can.
I read the link and Dr. Jenkins seems to have quite an impressive backround. Do you know how many actual AN surgeries he has performed and his is office willing to give you patient references? To me, I found those questions key to any form of treatments (of my health situations) that I have had. Asking here is also a terrific choice and hoping someone can chime in with reference for you.
I have to send a shout-out to Michelle and Chelsea as well... been so long since I personally have seen them here but send my best huggles, as always.
Robyn, again, welcome, to you, your son, your family and friends.
Phyl
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HI,
Thanks again for the support. HEre is more I found on the doctor.
Clinical Interests:
Adult/Pediatric Ear Disorders, Hearing Loss, Vertigo/Balance Disorders, Facial Nerve Disorders, Acoustic Neuroma, Cranial Base Surgery
Medical School:
Vanderbilt University
Residency:
UCLA Center for Health Sciences
Fellowship:
University of Zurich
Board Certification:
Otolaryngology
Sounds good.
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Welcome! Try to stay positive ... I know its hard .. we are a great support group here and most are willing to talk on the phone with ya if you like .. personally I think the younger folk that get tumors do better after surgery ... as the older we get, the slower the healing process. It will be scary at first .. the weeks leading up to the surgery are the worse! >:(
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Hi Robyn,
Very sorry to hear about your son, but as stated earlier he has youth on his side. I agree with Phyl in regards to "how many acoustic neuroma surgeries has this doctor performed". You definately want a surgeon experienced in this as the area they work in very, very tiny area with facial, hearing and balance nerve in there to add to the congestion. It has been stated before on other posting sights here 500 to 1000 surgeries is the norm. I would definately be asking that question to the doctor among many others. Take a tape recorder to the visit and record the conversation so you will be able to listen to this at a later time. It's when you arrive at home that other questions pop up. The initial diagnosis is very freightening and the mind has a way of running away with thoughts of doom and gloom. Stay positive as you say you are, breath deeply when it becomes overwhelming and ask lots of questions regarding the tumor, treatment and after care. Write down questions to bring to the doctor visit also. Most people go for 2nd opinions and if feasable, 2 heads are better than one.
I am 2+ years post surgery and have been teaching yoga for over a year now. I had 6 weeks of vestibular therapy after surgery to help with balance and I highly recommend this.
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Sorry to welcome your son to our club. I was 34 and my tumor was 4 cm when I was diagnosed. I had no hearing loss, it all started with a little numbness in the cheek. By the time I had the MRI, a few months later, I was dizzy all the time and very tired. The drs told me that surgery was necessary but if I had plans in the very near future we could put it off for a month or two. I just wanted it out and within 3 weeks I had the surgery.
So as everyone else said, ask the doctor how urgent surgery is needed. AN's are slow growing tumors so he may not need immediate surgery.
As for the surgeons, I did not research them too much but they made me feel very comfortable. I trusted them completely and after a 16 hour surgery they were able to remove ALL of my very sticky, very large tumor. My long-lasting side effects are deafness and facial paralysis which is still improving.
Best of luck to you and your son. As Joef said, the weeks leading up to surgery are the worst, I thought worse than after surgery. The anxiety is hard! Stay strong and we are all here to help.
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Hi, robynabc:
Allow me express my sympathy for your son and to welcome you to the website and this forum, where no one really wants to be, but where you can receive support and practical information not generally available elsewhere.
I cannot offer any specific information about Dr. Jenkins, although he seems well educated and has held a lot of notable teaching positions in his career. The important point in choosing a surgeon is not necessarily their education or awards, which always reassure us, as they should, but their hands-on experience in doing AN microsurgery. Teaching something and actually doing it are entirely different, as we all know.This is a very complicated surgery that requires both mental and physical ability to perform successfully. The general 'rule' is that a doctor who has performed anything less than 400 AN surgeries is still learning. Yes, thats a high standard but we're talking about brain surgery here and if certain nerves are disturbed, bad things can happen. You don't want to take that chance with your son. Why should you? Please do not be hasty in choosing a surgeon to remove your sons acoustic neuroma tumor. I would also advise you not to allow yourself to be intimidated by any doctor. They are not gods. You have to make a decision based on what's best for your son. That is your right - and your responsibility.
My neurosurgeon was a Yale medical school grad and taught medicine at Yale university. More importantly, he had 35 years of experience removing acoustic neuroma tumors. He admitted he had not always seen good outcomes over the years, but modern techniques had made that much less common, today. The plan was for my surgeon to surgically 'hollow out' the tumor, cutting off it's blood supply, then I was to receive radiation treatments - 4 months later - on the remaining tumor. I was especially concerned about nerve damage and my doctor respected that. He brought in a specialist from out of town to monitor my nerve functions during the surgery. My medical insurance company wasn't too happy, but they paid his fee, too, and I came out of a 9 hour surgery with no complications and no nerve damage aside from what I had already developed prior to the surgery, which was minor (but annoying). Within days, my pre-op symptoms disappeared. I was driving again within 2 weeks of the operation. According to plan, I underwent 26 FSR (radiation) treatments a few months later, which were uneventful. On my last MRI scan (April 30th) the remaining tumor showed clear signs of necrosis (cell death). I had an excellent surgeon (with a great team in the OR), a very supportive family and circle of friends, faith in God's grace and a positive attitude to help me through this medical challenge successfully.
Yours son's youth will likely help him heal fairly quickly from any surgery he requires. Your support and encouragement will certainly help him emotionally, which is more important than you may imagine, especially where ANs are concerned. I wish you and your son all the best as you begin this journey so many of us here have been through. I bet you'll both do just fine. :)
Jim
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HI,
Thanks so much for the great info and support. Your stories of encouragement are great. We see this doctor on Monday. According to our ENT she said this doctor has done the most of these surgeries in the whole US. I certainly hope that is true. I am going to ask of course. Thanks again and will update. I really appreciate all the positive stories. I feel this is really important for us. I feel that positive energy can work wonders. :)
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Hi robynabc:
I am glad you came on. Now that it is day two, you hopefully are feeling better about your son's AN and not feeling so alone. We have all been there. We know the shock, the acceptance and the getting on with it.
I cannot imagine your son would not be able to graduate with his classmates. If he is not having any of the extreme symptoms, chances are, another month won't matter a bit. Most experienced surgeons are booked out for a month or more anyhow. I had to wait almost 8 weeks after I decided to have surgery.
There is a list of questions to ask the surgeons on this site. If you click on the Acoustic Neuroma Association logo at the top right, then Overview on the left you will find it. My surgeon told me that if there was a chance that total removal of the AN would compromise the facial nerve, he would back off after getting what was safe to get. The residual tumor can be radiated a few months later. I would hope this is the norm now, but I would definately ask him.
Good luck to you and your son. He will be fine, and so will you.
Kathy
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We went to our surgeon today. He has a ton of experience with an. He has been doing these for 25 years. He siaid the tumor is on the brainstem. He said he has not done as many in the last couple of years. I don't know what to do. The only other option for us is going out of town. He would not be egotistical about saying how good he was. He said
he has heard of house. He said a technician will watch his facial nerve and gave us some worst case scenarios. If he has done 30 of these a year for 20 years but not as many in the last 2 years Do you think he is good? Going out of town would be difficult. DR LIllehei would be the Neurosurgeon. Both DOctors are the department heads of there fields at University of Denver. The ENT we saw in the first place said she thought he was a fantastic surgeon and if she had this she would go to him. She has seen him in action and thinks he is very gifted. My only worry was that he hasn't done as many in the last 2 years and he was a little bit concerned about how to save his facial nerve. I guess because of the brainstem issue. He said most people do okay with this surgery but was giving us some worst case stuff. I don't know if that means he is pessimistic or what. Any thoughts would be helpful.
Thanks.
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Just because a doctor says that they themselves would use a physician does not mean that that physician is good or that the outcome would be the best. Trust me, I am the product of such an experience and my outcome wasn't good. I had many complications and I wondered afer if given my outcome would my doctor really have chosen the doctor that he sent me to. Trust your gut. My advice to you, is if it is possible, go to the House clinic, by far they have the best outcomes on the west coast. Furthermore, your son is young and he should seek the best treatment available to him. Traveling might not be the preferred situation but in my opinion (and it is only mine) I would go anywhere if it meant the opportunity for the best result. The best of luck to you. And I agree that he probably can go to his graduation with his doctor's permission. I will be watching this post and saying a few little prayers for him and you.
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First of all my prayers are with you and your son. I had a large tumor and I had to have it out within a few weeks due to the location (brainstem) and some complications that were difficult on me physically. I did not have a lot of surgeons to chose from in my area. Many left my state a few years ago due to a large # of lawsuits. I did not ask my DR how many he performed over the years, maybe I should have. He is about 40 years old, if you do the math, he couldn't have done nearly the amount some folks have suggested.
In my opinion I don't necessarily think a "number" is what qualifies as a good surgeon. Obviously experience is critical but to perform 500 - 1000 AN tumors, I am sure not all were on the brainstem or large tumors that were removed. So my advise, ask your Dr how long you have to make a decision, the most important issue is that your son has the surgery at the appropriate time and not be delayed due to a schedule in making several appointments seeing different surgeons. Second, I would want to know all the facts. If my Dr gave me worse case scenario (like mine did) I felt he was being honest with me. In addition, my Dr was there for me 24x7. He gave me his cell phone to call, he came in the office on the 4th of July to see me. For my surgery, he brought in a nerve specialist to monitor my nerves while he cut out the tumor on my brainstem. My MRI shows that my nerves are in tack. Unfortunately my nerves were stretched over a long period of time over a sizable tumor. So bad news is, there is paralysis and eye issues. So ask your Dr about follow up and support.
We are here for you, our prayers are with you and I am sure you will do the right thing.
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HI,
I feel pretty comfortable and we are going to see the neurologist. Two good things he said was that the tumor looked necrotic in the middle so he thought there was a chance that it would easily cave in on itself, and he said 25 years ago he operated on a 7cm tumor. He said all she had was a bit of a limp. I thought that was remarkable for so long ago. I think he is very much skilled and has done many tumors. Not all large but has done large ones. I am going to ask him about the latest cutting edge technology. I want to be sure that he is up to date with them. He said that taking out part of the tumor and leaving some of it was an option too. I asked about a specialist for the nerve and he said a technician would watch it with an alarm. If he has done 30 a year for 20 years then he has done about 600 I guess. He said that he just moved here two years ago and there have not been many here. I thought that was interesting. He had no problem with a second opinion and told us who to talk to at the House place and others around the country. He did admit there may be others in the country who have done more in numbers. I think he is skilled, I think my only worry is the lasted technology.
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OH and one other question, when you have facial nerve paralysis is it just one side?
Thanks again for all the info.
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Robyn,
HEI is certainly reputable for S. CA (and all over, as many have traveled there). Stanford in N. CA certainly ranks up there as well. Mass General in Boston is top notch on the east coast and there are so many wonderful surgeons scattered about.
Just a suggestion and take it with the grain of salt it's worth..... ask these specific dr's that you are speaking and/or meeting with for their own patient references. I reference for my radio-oncologist and if a surgeon is truly worth it (and you cannot travel), they should be more than happy to provide you with their own patient references, with good outcomes and not so good. You can learn lots that way. Many folks here, as you can see, will also certainly chime in with their references as well.
Hang in there... I know it's a tough ride, but we're all here to do the journey with you all.
Phyl
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Hi Robynabc: yes I have facial payalysis on my left side the same side of my AN. I am also deaf in that ear and have double vision in my left eye (which appears to be a little more rare). My dr told me up front I would lose my hearing and would probably have facial paralysis for some time. The eye issue has been unusual. I see a specialist next month to hopefully correct the double vision.
About 6 months after my surgery I got a small smile on my left side. I am now 11 months out and it is slowly getting a little more movement. I had a gold weight put in (simple procedure) in my left eye about 6 weeks after my AN was removed. That helps with closing the eye and not having to wear a patch over my eye to keep it closed. I did not experience any headaches and was back to work (work an average of 50 hours a week) and exercise (taekwondo) within 3 months. I had two CSF leaks which means that my incision had a leak. The second surgery did the job and no issues since.
You mentioned the latest technology and yes that can be an issue. Some hospitals do not have the technology and you want to consider all the options. However, based on the size of your son's tumor, that may limit you on the types of surgeries your Dr can perform.
After the surgery your son will have several follow up Dr visits as well as multiple and/or yearly MRIs. He may also need physical therapy and may need an opthamologist. It sounds like a lot but I look back this past 11 months and it goes by quickly, my life was briefly interrupted last summer, my sides effects-well stink....but I feel pretty much fine. My foot surgery I had when I was in my 20's was way more painful and a lot more rehab than this surgery....
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robynabc, You mentioned that he is new to this hospital. Where did he previously practice? Definitely ask him for some patient references.
I said before I didn't research my surgeons much. My local ENT knew my surgeon personally, made a personal call to his cell phone to get me an appt the very next day on a day that the surgeon usually did not see patients. I was VERY impressed with this extra level of care. He was very patient with me and that first visit was over an hour. The very next day I saw the neurosurgeon. Again, he allowed me all the time I needed to ask questions. I was provided a direct number to his nurse for any questions and I used it quite a few times. Surgery was scheduled three weeks later. In that time I saw the surgeon once more and he called me at home the day before surgery just to make sure I was doing ok. I was very impressed by the amount of compassion and concern the doctors showed about my mental state prior to surgery. Long story-short....I had a very high level of trust. I've seen my surgeon many times since surgery.
Other than the expected hearing loss, Facial paralysis is my one issue. Yes it's one sided and it can vary greatly. I got some excellent literature from the ANA about facial paralysis.
Good luck to you.....
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TP:
I wish to clarify why I believe a neurosurgeon performing AN surgery should have at least 400 operations on his/her resume.
As you noted, all AN surgeries are not the same - because all AN tumors are not the same. A neurosurgeon who has performed many hundreds of AN surgeries has very likely 'seen it all' and is prepared for any 'surprises'. He knows what to do. His skills for this very specific surgery have been honed by hands-on experience, not by simply reading medical literature or attending a seminar. While experience cannot guarantee the outcome, it certainly should be seriously considered as we know what can happen when a newly-diagnosed AN patient doesn't check out doctors and simply goes where he or she is recommended, sometimes to their later regret, as posts in this forum attest, such as the one by 'nikynu'. This is why the House Clinic is renowned. AN-experienced surgeons and generally good outcomes. The word gets out. Bottom line: I believe that the experience behind 'the number' is critical.
I hired a 'local' neurosurgeon (30 miles away) who had been performing AN removals for over 30 years. He was highly admired by the hospital staff, who told me I was lucky to have him as my surgeon. The result? No complications, no CSF leaks and a rapid recovery. This is what I want to see for every AN surgical patient. This is why I recommend choosing a surgeon with extensive AN experience.
robynabc:
Your neurosurgeon sounds quite competent. Nerve monitoring is critical and becoming routine for AN surgeries now. I had it, and I appreciated it...no nerve damage. Your doctor is giving you 'worst-case scenarios' to prepare you for that possibility - and to be completely honest with you, as AN surgery, unfortunately, is fraught with possibilities for 'complications'. The availability of technology is a factor to consider but most hospitals are pretty well equipped these days. The fact that this surgeon hasn't done any AN surgeries in 2 years is something to consider - but not an automatic reason to rule him out. Ask him if he would consider surgery and radiation, combined. My surgeon recommended this approach and I'm glad I decided to take it. Almost a year later, I'm good and, according to my last MRI, the tumor is dying. What few 'issues' I have are very minor and I expect they'll be gone, eventually.
Based on your positive comments here, I believe you will likely choose this surgeon. Still, don't jump into a decision and do consider sending your MRI scans to the House Clinic in L.A.
We all want the best for you and your son.
Jim
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Hi Robynabc: sorry to hear about your son- These first few weeks by far are the worst as you are having to get use to this issue and deal with all this new information. It does get easier and the terminology does become second nature. I was very pleased with my treatment at Stanford (I opted for cyberknife surgery) and if you need a second opinion Dr. Stephen Chang is great for a gut check- he does both radiation and surgery so you will get an unbiased opinion. Keep reading all you can on this website- it is a great resource. Also I see that some of our heros have posted. And while this is tramatic: remember it's not cancerous- we do have to look to the bright side of being the lucky 6% of inter-cranial tumors! (a fact i read somewhere in all my research). Pubmed.org is a great website as well. Take care, Annie
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HI,
Thanks again for all the good info. WE have sent our MRI's to House just today. This is what is critical to our desicion- I talked to someone at ANA this morning and she brought this up to me. It was in a newsletter and they sent the newsletter to us.
"Recently, we and others have found that the
majority of facial nerve morbidity can be
avoided by leaving a small piece of tumor capsule
on the nerve. Even when small pieces of
residual tumor are left on the brainstem or facial
nerve, tumor growth usually stops as long
as the tumor is not connected to the porus (i.e.,
opening of the internal auditory meatus).
Therefore, facial nerve preservation is slowly
becoming practice in most centers for acoustic
neuroma treatment.
Currently a large prospective multi-institution
trial conducted at Stanford University,
University of Cincinnati, House Ear Institute
and University of Pittsburg is underway to
evaluate the efficacy of such a surgical approach.
In a smaller study from Belgium, such
treatment was found to reduce facial nerve
morbidity in surgery of large acoustic neuromas
from an average of 30% to zero.
The application of cutting edge surgical technologies
includes frameless stereotactic intraoperativeintraoperative
guidance for accurate localization of the
lesion and determination of the exact size of any
residual tumor on the surface of the nerves or
brainstem, safer drills for removal of bone along
the surface of the inner ear (e.g., ultrasonic bone
curettes) and the use of endoscopes (long thin
telescopes) that expand the surgical field of view
around corners where traditional microscopic
optics fail."
If our surgeon can have a consult with DR. Brackmann, and he is open to the new technology then I think we will feel comfortable with him. DR Jenkins said he knew DR Brackmann, and gave us many other DRs that can do this also. The list he gave was a short one. I am going to ask brackmann about Dr Jenkins.
I did mention leaving parts of it and he said it was an option. I think the fact that the tumor has some necrosis in the middle and that he said he thinks this was a fast growing one is a plus. I think this surgeon is skilled. My worry is the new techniqes. If he is up on that and the Neurosurgeon is too, I will feel better about it. It will be tough to get our insurance to pay for house but if we need to do it we will. THanks again for the information.
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Hi Robynabc,
So sorry to hear about your son. You came to the right place to seek information and support. I hope everything works out really well. Research, research and research!
Just a comment on the article you quoted. My surgery was in 1988 for a 6x3x3 cm right sided AN. I was 25 at the time. The facial nerve was spared. However, I am facing another surgery again for a recurrence on 6/27. It looks like my surgeon did what this article suggested; left pieces of the tumor capsule at the brainstem but away from the porus. It took my tumor a long time to grow but it did anyway. When this article says "usually don't grow", how long is a follow up? A year or two ? In most cases it takes longer for a benign tumor to start growing unless it is atypical (pre-cancerous). This is especially true of young people. Keep this in mind because your son is very young and if something is left (which might be preferable in order to preserve function), you need to know and schedule follow-up MRI's forever. The good news that if he needs to do anything again in the future, the technology will be much more advanced. I am scheduled to have endoscopic removal - new technology like the article suggests. By the way, where was it originally published?
Eve
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HI,
Thanks for your info. This article was from September 2006. ANA sent it to me, I don't think it is on their site.
I just got off the phone from Dr Jenkins and he said the same thing!! I can tell he has a lot of experience because he was thinking ahead and when I read this to him he said that he had done a large tumor on a 13 year old about 18 years ago. And I think some may have been left. He said she now has a tumor on her brain stem. That is more serious. He is okay maybe with leaving some on the nerve but is not comfortable with the brainstem. When he said this I really felt more comfortable with his experience. I asked about the new technology and he said he does it the same as others. I read him that part and he said the same thing. I think that new technology is good but you do have to look ahead the new procedures have not been around as long and maybe some of the long term affects could be affected. He has done large tumors with this neurosurgeon. I am feeling more and more comfortable with this surgeon. I felt funny asking about all this. Surgeons can be hard to talk to. I felt like I was interogating him. He said I need to trust whoever I go with.
I am sorry about your recurrance. I hope it goes well.
THanks Eve for your post.
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Robynabc,
I'll weigh in on the quote you referenced for what it's worth.
While in theory, the process outlined is very attractive, I would submit that it is less than proven that the AN can consistently and reliability have the remainder that is left be effectively "deveined" or deprived of it's blood supply to prevent future growth. There are a number of posters on this forum who have had the unpleasant experience of regrowth in this scenario. So while the advantage is that the facial nerve is protected by leaving some residual tumor around it, there is no guarantee that the remaining AN will be killed. The other version of this debulking strategy for large tumors is to surgically remove the majority of the tumor but not remove the tumor adjacent to the nerves and irradiate the remainder ( GK or CK). I think this second treatment following the surgery is more effective than relying on the surgical solution alone.
Mark
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Hi,
Thanks again for the information. I just talked to another doctor in this state that does AN's. He referred me to Dr Jenkins the doctor here in Denver and said that the neurosurgeon he works with is as good or even better than Jenkins. He said he thinks they are as good as anyone and has done many of these tumors. ANd he felt that having him in state to do all the followup will be benificial too. I am thinking Dr. Jenkins will be our guy.
This doctor in Colorado Springs called me at 9:00 at night and was sweet as pie. I know he did someone else's 4CM tumor on this forum and that is why I called. Thank you again for all the help and information.
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Well,
Better news. Went to the Neurosurgeon today. DR. Lillihei. Much more positive and he does these often. He said they just did one on someone last week that was larger than Eric's. We have been focusing on what Eric could lose and he said there is a lot he can gain from getting that thing out of there. Meaning things hopefully will get better for him. We did not realize until lately how much his balance is off and he is tired alot. He does more of the large tumors. It may be good to find someone who does alot of tumors but doing alot of the large ones is as important also. (for us anyway) And he has been doing these for 20 years also. His specialty is head tumors. So we will have a neurosurgeon and a Head and Neck surgeon with 40 years experience between them. And I believe he is a member of ANA. I will verify that tomorrow. We are feeling better about the situation and are almost 90% sure we will go with them. We still have to talk to house beginning of the week. So, we will try to just relax over the weekend and make the decision on Tuesday. Thanks so much for all the good information. This is a fabulous site and forum.
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Look forward to reading of your decision, Robyn.
My neurosurgeon is also a member of ANA so I would have to consider that a small but positive sign: he's involved.
Try to relax a bit over the weekend. :)
Jim
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Thanks Jim. I have been so grateful for the information and support. You guys are great.
It seems like the decision is the hardest part. For me anyway. I want to make sure we are doing the right thing and putting our son in the best hands. It is true that while House is great there are other very good doctors out there too. It is a matter of finding them and making sure.
Thanks,
Have a good weekend.
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Sorry to hear about your son but he will be ok and actually the younger you are the stronger your body usually is to recover faster.
I had my tumor diagnosed at 18 also and had sugeory 2 months after they found it at the University of Pennsylvania. I was scared at first but within a week of having it removed I was walking around and had a little bit of dizziness and fatigue but being that I was young I recovered within 3 weeks and was out hanging out with my friends etc..
Tell your son he isnt the first to be on this bad road and that I did things after surgeory I never thought I would like learn to ride a motorcycle etc.. Im now going on 25 and just get dizzy here and there which im gonna get checked out this Tuesday but other then that Im no different then anyone else other then I cant hear out of my left ear.
Any questions feel free to ask me.
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HI,
Thank you so much for your words of encouragement. The fact that he is young helps us all think he will recover fairly fast. I am glad you are doing well. I don't know if your AN was as large as my son's but we are very grateful for the encouraging stories. :)
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Hi Robyn,
Be optimistic and just do what you have to do..everything will be taken care of..say hi to your son from me..I know how frustrating is to suffer from illness when one is still young (lot of self-image, appearance, relationship issues).. but still, he will be fine..In my case, I just have hearing loss on one side..and this doesn't make me much differnt than any of my peers..my prayers are with your family..thanks for the encouraging comment on mhy post too.
Robin
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I went for 7 opinons before I could pick one and you need to at least get 3 I read what you posted about him. it depends on the risks and hearing lost. I went to House and Ear Dr Brackmon in east L.A. UCSF San Francisco and ended up with cyberknife at Stanford Ca Dr Adler. Good Luck
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Hi Robynabc,
I can understand how scared you must be. This is an incredible site you will find help here. I just had my surgery 5/4 and I'm doing very well, I am walking 3 miles a day and I'm 51. I just want to let you know your family is in my prayers
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Robynabc, I'm the one who had Dr. Hegarty in the Springs. I had a 4cm tumor that was pushing on my brainstem. Did your son have surgery yet? I am 2 1/2 years out from surgery and I am doing wonderful. I can not say enough good about Dr. Hegarty. He was very involved after surgery and all my after care has been excellent. I still see him because he debulked my tumor so there is a slim chance it could reoccur. He does not let any part of your recover go with out attention. I had balance therapy for four months and a gold weight in my eyelid for a year. He referred me to a wonderful plastic surgeon for that. I always say I got the best treatment possible. Hope you and your son are doing well. If he has had surgery, the best I can tell you is take one day at a time and he WILL get to the point that life is good!!! Blessings, Cath
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Hi Robyn. I am sorry to hear about your son. I know how scared we were when we found out. I was diagnosed with a 4cm AN 2 weeks ago and though I’m certain where I want to go for surgery, I still need to figure out with my insurance how to get there. This forum taught me about House Ear Clinic in LA. This organization is at the forefront of AN research and surgery and has been since the mid ‘60’s. From what I’ve read, they have performed the most AN surgeries in the country. I sent them a CD of my MRI and they did a phone consult. I spoke to Dr. Luxford and I missed Dr. Schwarz’s phone call one evening and learned that he had a death in the family the next day, so I am awaiting his call as soon as he’s back. Friday I requested that Dr. Luxford call my girlfriend, Sam, so she can get a feel for the Drs. And yesterday morning, 9am my time 6am LA time the phone rang and it was Dr. Luxford. It was totally unexpected especially on a Saturday morning. Sam slept in as we needed it after the past 2 weeks of stress and worry, and he said he would call back. At about noon the phone rang and it was him. If I had even a shred of doubt for using House I think that ended it all right there and for me, sealed-the-deal as much as it could given that there are so many aspects of insurance and logistics still left to workout.
I know how scared and your son must be right now. This forum has helped turn fear into education for Sam and me, and of the many testimonials we read regarding 3cm+ tumors removed at House, the good recoveries eased my mind. Though no surgery is guaranteed, I want to go where my chances are the best. I will loose the hearing completely in my right ear, but chances are good I will keep my facial nerves.
My suggestion is to send a CD of your MRI to House, talk to the doctors there and explore the option using HEC for your son’s AN removal. Though I don’t have a post-op story for you and I’m newly diagnosed, I urge you to explore another option.
Adrian
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Eric had his surgery about a month ago. He is doing absolutey phenomenal except for one problem. He has a parylized vocal cord. He does not have much of a voice and eating takes him some time. His facial nerve was completely saved and he has had no weakness hardly at all and no paralysis at all. And they saved it and got all of the tumor. This is practically a miracle. The vocal cord will hopefully come back. He may have to have another surgery for that if it doesn't. His balance is better than it was before the surgery. Before the surgery he was tripping all over the place. He was walking pretty good when he got home ( he would just have to gently touch us and at times we just had to stand next to him in case) and in about 2 weeks he was better than before the surgery. Same with his facial numbness. This is still hard for me to talk about so I will keep it short. I know we picked the best doctor especially his ENT Surgeon. Everyone told us he was amazing. He was. So was his Neurosurgeon. His doctors are both heads of the Deptments at University of Colorado. They were excellent. And yes we talked to house and decided on University of Colorado. I will explain our decision in another post.
Eric was home in 5 days. He recovered from the surgery really fast. I am sure that is because of his age. When I able to talk about more I will let you guys that need help with picking doctors know how we did it. We also had many prayers ( I contacted everyone I know that goes to church and asked them to pray for him and asked them to ask their church to pray too.) and did alot of Reiki before the surgery. We also did our best to stay as positive as possible before the surgery. I believe this all had something to do with how well it went. Here is the kicker, the day after he went to the doctor for his followup we asked if he could walk they said 'walk as much as you want'. So, next day he went to a movie at the theater. This was 11 days after the surgery. He wanted to go 2 days earlier but I insisted that he wait til he talked to the Doctor. Amazing. Thanks again.
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Oh and I forgot to say thanks so much for all your information. It was invaluable to us.
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I'm glad your son is doing so good Robyn. May he continue to do so.
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robynabc:
Your son sounds like an amazing young man. Please keep us updated on his progress.
Best of luck to him and you. Kathy
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So sorry to hear about your son. My sister in law and I both within six months had the same tumor, but on different sides. We live on the east coast, but both went to The House Ear Clinic in LA. We both had no facial problems and recovered relatively quickly.
She did have spinal fluid problems, but I did not and mine tumor was larger than hers. I feel my doctors and the hospital given to us was just "outstanding care" and was so glad I had it done there and no where else. The important thing is to do your homework about any dr. or place you choose for your son. WE all want the BEST we can get for our health. Keep us updated on your son.
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Robynabc, I'm the one who had Dr. Hegarty in the Springs. I had a 4cm tumor that was pushing on my brainstem. Did your son have surgery yet? I am 2 1/2 years out from surgery and I am doing wonderful. I can not say enough good about Dr. Hegarty. He was very involved after surgery and all my after care has been excellent. I still see him because he debulked my tumor so there is a slim chance it could reoccur. He does not let any part of your recover go with out attention. I had balance therapy for four months and a gold weight in my eyelid for a year. He referred me to a wonderful plastic surgeon for that. I always say I got the best treatment possible. Hope you and your son are doing well. If he has had surgery, the best I can tell you is take one day at a time and he WILL get to the point that life is good!!! Blessings, Cath
I think Dr Hagerty is a very kind person. When I saw your post here about him. I called him in the Springs. He called me at 10:00PM that night from his home. He told me he didn't feel qualified for Eric's because he is young and how large it is but said he would have sent us to the Doctors at Colorado University that we were already seeing. He spent 20 minutes talking to me about the two places we had in mind and he was so helpful with information. I really thought he was great. I am so glad you had him for your surgery.
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So sorry to hear about your son. My sister in law and I both within six months had the same tumor, but on different sides. We live on the east coast, but both went to The House Ear Clinic in LA. We both had no facial problems and recovered relatively quickly.
She did have spinal fluid problems, but I did not and mine tumor was larger than hers. I feel my doctors and the hospital given to us was just "outstanding care" and was so glad I had it done there and no where else. The important thing is to do your homework about any dr. or place you choose for your son. WE all want the BEST we can get for our health. Keep us updated on your son.
So glad to know you are doing well also. Thanks so much.
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Hi, Robyn:
I just want to add my congratulations to you and Eric on his successful surgery and rapid recovery. Prayers were definitely answered.
I admire your determination to do the best thing for your boy in a situation that you went into knowing little but diligently learning all you could - here and elsewhere - and seeking out the very best surgeon to perform the operation on Eric. It paid off handsomely. I pray that Eric's vocal paralysis will resolve in time and he'll be back to his 'old' self. I know you'll still be with him every step of the way. Give Eric my best wishes and hope for a bright future, which I know he'll have. ;D
Jim
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Thank you Jim for your words. Jim you were very istrumental in my decision making for Eric's doctors. You gave me a ton of information. I will tell you that I learned alot from this experience. I am a natural researcher so that was something that helped us. It was very upsetting for me and I cannot imagine how hard it is for you guys when you are researching for yourself. There were times that I felt that doctors didn't understand how emotional it is and there is one place that pressured us hard and I don't agree with that. We are very vulnerable and emotional during this time and it is really hard. I was persistant and listened to my intuition and what made sense to me. That made all of the difference. I had to sift through what made sense and what didn't and I did not take anyone's word for it.
Peace to you all and I am here to help in anyway I can too.
Thank you to you all on this forum. You all helped us immensely.