ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Gloriann on May 13, 2008, 08:57:15 am
-
The neurosurgeon I was seeing following my acoustic neuroma surgery told me 5 years after the surgery that I did not have to come back any more or have any more MRI's done. I had had 3 MRI's (2 yrs apart) after the surgery because a tiny piece of the tumor had been left on my facial nerve.
I got a copy of the MRI report at the hospital after I came home and was shocked to read that there was a recurrent tumor. I called the doctor's office and his nurse told me they had received that report in the mail after I was there, but that the doctor did not agree with it. It made me mad that I was not informed of this.
After reading a lot of these posts here on this forum, I have not seen one that said a doctor released them. It seems like most doctors have you come back for MRI''s the rest of your life, even if they say they removed all of the tumor.
-
Gloriann -
I had my one year follow up MRI and was told that I do not have to go back for another until I hit the 5 year post-op mark. It seems like some surgeons want them done every year for a while, and others don't want as many. It's amazing how much variation there is from one doctor to another.
If it's something that concerns you, I'd ask him about it. Maybe he is basing his decision on the fact that once the AN is removed surgically, after a certain point, you're really at no greater risk than the general population for developing another one. (except in cases of NF2).
Or maybe it's a TN doctor thing - I'm in Nashville and my doctor seems to be rather confident that I don't need aggressive follow up.
Lori
-
I agree! I'd be mad too! He should have told you about it, even if he disagreed with it! It's your head!!
Lori
-
I did not have an MRI until 7-8 years post-op and the regrowth was there then. My orginal surgeon didn't feel the need to continue to follow up....it was during investigation for another issue they did the MRI at that point. I would have hope now a days there was a standard for when to recheck and how often.
-
Gloriann~
I had my surgery 12 years ago. I went for follow up MRI's at certain month markers the first year and then yearly for the first 5 years. After that, I was released from his care (he actually moved from Houston & I didn't even know where until I goggled it and then found out on here!). I have a wonderful PCP who has allowed me to get an MRI since then and I think will order one whenever I want - for my peace of mind. I just want to get through this current medical problem first!! :D I also have spoken to my girlies' pediatrician & I can get MRI's for them anytime I want too. You could always just ask you regular Dr. what he thinks...
K
-
Kathleen
How was your second surgery compared to the first one?
-
Gloriann:
Congratulations on a successful surgery and an AN-free 5 years. :)
The reality is that every AN 'case' (patient) is slightly different, often in multiple ways. Acoustic Neuromas grow at differing speeds in differing directions, making the effects of the tumor a bit (all together now) different for each patient. Doctors differ, too. Some are fairly casual once they believe they 'got it all' and the patient shows no sign of re-growth - or, as in your case, any possibility of re-growth can be explained away. Some doctors are much more conservative. Mine is. I've had multiple MRI scans over the past two years, all for valid reasons. Following my debulking surgery, I had an MRI to determine the size of the remaining AN. I had another MRI three months later to use as a guide (with an accompanying CT scan) for my planned FSR treatments. I had a follow-up MRI six months later and another six months after that. I have another, semi-annual MRI scheduled for June 30th. This is to 'track' my AN and make sure it's shrinking and dying. My neurosurgeon will likely allow me to go to a schedule of annual MRI scans if this one looks good. Eventually, I would go on a five-year plan, but, pragmatically, I may not be around quite that long (but you never know).
In any case, an AN patient being discharged after 5 years is a bit unusual but not unheard of. If this concerns you, either ask your doctor if he'll order an MRI for you once every five years (why not?) or, consider finding another doctor.
Jim
-
I for one, plan on having MRI's for the rest of my life. At least every 3 or 4 years. There are too may folks on this site who have had recurrent tumors to make me feel comfortable not doing this.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
-
It has now been 7 years since my AN surgery. When the different opinions came up 2 years ago between one of the 2 surgeons and the radiologist I did change doctors. Another MRI was done this year which shows the tumor has grown since the last MRI was done 2 years ago.
My point is, that the surgeon should never have released me, especially after he read what the radiologist had to say, but the surgeon told me he knew more than any radiologist.
I found out what the report said one day when I just happened to be in the hospital and thought about getting it. My doctor never informed me of what it said and because he did not agree with it he thought I did not need to know. This is what made me angry.
-
I'm surprised the doctor released you after so little followup if he knew a piece of the tumor had intentionally been left behind! Even after my surgery way back in '88, the doctors in the various states I bounced around to followed me on and off for almost 10 years, and in my case a total resection had been accomplished (ie apparently the regrowth developed from mere cells).
My current neurosurgeon has said his typical plan is to do 2 MRIs the first year after surgery, then (if there is no tumor) at doubling times: ie 2, 4, 8, 16 year intervals. If there IS a tumor, he has them done yearly.
-
Gloriann-
I was horrified when I read your post!!! And so glad that you changed doctors.
I am in the same camp (or ship, as it were) as Capn Deb - I will want to be monitored for the rest of my life, just for my own peace of mind. I am seeing my nueursorgeon for the first MRI in Sept and plan to talk with him then about long term follow up. Even if he doesn't do it, I'll do as Kay has done and get it ordered from my PC doc.
I started getting copies of all my own radiology reports when I had my first irregular Mammogram about 18 years ago. I read every report, and I call my docs if I have questions. At the end of the day, it's my body and my health and I feel a strong need to understand all the tests as thoroughly as a "layman" can (sound familiar, Jan? ;))
Keep us posted, Gloriann, okay?
Debbi - steaming in NJ
-
I had an MRI at 2 years and then there will be another at 7 years and assuming it is clear then I get the "all clear"...
I actually saw the films and there is nothing there...
-
Well, I just last month passed my first anniversary of my surgery date and found out today I will have a follow up MRI next week and if everything is fine ...once a year after that. Didn't know I would be having MRI's yearly.... and then found this subject today and it made me realize that it's not over yet... and may never be over. Of course I am nervous about it..... don't want them to find anything... left of the tumor - or a new one. I already lost my hearing, have LOUD tinnitus all the time and some facial paralysis..... I don't want to have a repeat performance to see what else can happen in a surgery..... sorry, don't mean to sound negative but having a tough night. Many hard things have been happening in my family lately. My mom fell and broke her neck in 2 places a few weeks ago (no paralysis but slow recovery), ....at the same time my dad developed severe dimentia and we had to put him in assisted living .......one of my cousins was just diagnosed with stage 4 brain cancer (he has 3 tumors) , and today my great niece - a young mother with a 2 year old and a 3 month old was diagnosed with agressive leukemia. Even her baby (and maybe the 2 year old) will have to be tested for leukemia. I am just overwhelmed with the bad things in this world right now..... especially the ones that are life changing for my famiily members. Lately so many hard things have happened that it is hard to hope for good news - I would really appreciate your prayers for my family. I feel like I am on empty right now...
Thanks,
marg
-
You have my prayers Marg! I hope your situation improves eventually. May God Bless, Mickey
-
Marg~
Anyone would be overwheomed with just one of those things...that is, my friend, a LOT on your plate! I am so sorry - it seems you & your family are under attack right now. I will certainly keep YOU and all those mentioned in my prayers. Take care of yourself so that you will be strong & healthy for all the others!
K
-
Oh Marg - that sounds like so much for one family to deal with all at once.
Stay strong and know that you and your family are in our prayers. I hope for good outcomes for everyone.
Lori
-
Marg -
as K and Lori said you are going through so much it's only natural to feel overwhelmed. Sometimes when it rains it pours :( My heart goes out to you and your family members.
Thank you for reaching out to us and please feel free to keep reaching out. We are all here for you.
I hope that your MRI next week shows very positive results. I also hope that the other situations your family is trying to cope with show improvement.
Keeping you, and yours, in my prayers.
Please stay in touch.
God Bless,
Jan
-
Marg
I am so sorry to hear about all the bad news coming at you all at once in your family. I wish I could say something to make you feel better. As long as you are concerned for others in your family, it will get your mind off your own worries for awhile. I tend to worry a lot about things, then have to remind myself to have faith and hope that God can get me through this. I love the scripture verse that says "He does not give us more than we can handle".
I pray that you get some good news from somewhere this coming week. You certainly deserve it!
I know this is going to sound strange, but I am going to see the surgeon in a few weeks, the one who released me. I am bringing copies of my last 2 MRI's. I never thought I would be going back there, but after talking to the other surgeon (ear doctor) who operated on me, I feel like this is the right thing to do. He did not tell me to go back to the other surgeon, but it came up in our conversation and it was my idea. It's a long story of how that happened and I won't go into it, but I would like to think this was the Lord leading me. The ear surgeon, soneone who has given me good advice in the past, is someone I trust. He was giving me several things to think about for the future, options that I have with this recurrent tumor.
I am really confused right now and want to hear what the doctor has to say about that who operated on me in the first place. He only made me mad one time. He has done more good for me than bad. Maybe after I see him again in person things will be alright. He did write me a letter 2 years ago after our phone conversation (about the different opinions on the MRI) and he had looked over all my MRI's again. He said this "could be" a tumor and recommended my getting more MRI's at that time, not neccesarily seeing him, but I guess that is what he meant. I already had an appointment to see someone else by the time the letter came (6 weeks after the phone call) and I wanted another opinion anyway.
I hope my "story" is not too confusing. I know that I am telling how things happened in "bits and pieces here". Maybve I should start a new post and call it "my AN story".
Thanks for all who are reading this. I love this "support group"!
Gloria
-
Gloria -
I understand why you are going back to see the doctor who released you. It's the kind of thing I would do.
IMO before you can truly move on in this situation you need to have closure with this doctor for your own peace of mind. I think it will also be a good thing for the doctor to understand your concern and have a chance to explain to you why he chose to release you. Doctors aren't Gods, they are as fallable as the rest of us and even though they have gone through many years of education, it is my feeling that they still can - and do - learn from patients. Perhaps by talking with you this doctor will learn something that will help another patient somewhere down the line.
Good luck with your appointment; I'd be very interested to see how it goes. Please keep us posted.
Jan
-
Thank you all for your kind words and support. I really have greatly needed my AN family these last few days.
I'm sure things will work out - just hard when tough things all seem to come at once. After I put the last e-mail in the other day, I got a call from the assisted place where my mother-in-law lives. They had to send her to the hospital . Then the Hospital released her yesterday afternoon.... but then we had a call and they sent her back in again last night. We now need to make some changes in her care (she has been in assisted for the last 2years) . She lives here in town and we have been taking care of her needs for a long time. These decisions for her need to be in place tomorrow morning before they can release her -
Gloria - you're right.... I don't have much time to think about 'my personal stuff'.... too busy with other urgent matters ??? . I know that God is still in control and knows what is going on . I'm just very thankful that school is out for the summer and I don't have to meet the needs of my 27 2nd graders in the middle of all this other stuff. I know that there is light at the end of the tunnel.....but where the heck is the end of the tunnel :o I keep looking for it - ok who swiped it? :-\
marg
-
Marge,
That tunnel does seem to be awfully long sometimes, doesn't it?
Not too long after I had the MRI done two years ago and found out about the recurrent tumor, my daughter-in-law died suddenley at the age of 32, leaving my son with 2 young children to raise, so I put my tumor completely out of my mind, until it was time for the next MRI to be done (which was in march of this year).
Leapyrtwins
Thank you for understanding about the situation with my doctor. One thing I realized was that when I took that last MRI to him 2 yrs ago I did not have the report with me and the only thing he had to look at was a computer disk of it, not the actual films, so maybe that is why he could not see anything. I looked at the computer disk at home and can't find the tumor either, but the radiologist had me come into the hospital one day and showed it to me on his large screen.
The thing I don't understand about my doctor is that he did receive the MRI report in the mail after I left his office, but because he did not agree with it, he did not call me about it. All he had to do was give me a call and say to have another MRI done in a year or two, just to make sure. In other words, if I had not gotten my own copy of that report, I would still not know that the tumor was back and I guess I never would know, not unless it got large again and I began to have the symptoms that I had before the surgery.
My appointment is not for another 3 weeks, but I will certainly try ton remember to come back to this message and post about my visit. I may make anew message about the visit, since I have mentioned this on several of the posts I started recently.
-
Hi Marg
Anyone would feel overwhelmed with everything your family is trying to cope with. Please know that your AN family here are all praying for you all and to have the strength to reach out any time to talk or cry or whatever you need to to stay strong.
You are stronger than you think.
Take Care
Claire
-
Thanks Claire and Marge.... I so appreciate prayer. Today I met with Hospice about my mother-in-law. We will need to find a adult foster care home for her until she needs Hospice itself...then got a call an hour ago from the Assisted place she lives ...that 'mom' had fallen 2 more times tonight. Right now I have a Hospice nurse over there making an assessment of the siuation - she may move to Hospice tonight until we can find a Adult foster home for her. Had my MRI today - I am beat ! I'll be glad when the nurse calls so I can go to bed.
marg
-
Hi Marg
You certainly have your hands full. YOU need to take care of youself and let the hospice nurses take charge of your mother-in-law at this point. It will be draining on you just to visit and take care of incidental things ( BTW- just as important) When the time comes,and it will, you'll need that strength to be ready along side of hospice and/or the adult care center.
Make sure you eat well and get as much rest as possible. Yoga or tai-chi may also help the stress of the mind. Stay in touch
Take Care
Claire
-
Kathleen
How was your second surgery compared to the first one?
Gloriann: surgery for the regrowth was as my doctor predicted "a walk in the park", I had lost all there was to loose the first time around (hearing, facial nerve functioning, balance and all that) and the first surgery was like 16 hours long and the regrowth surgery was like 4....first time life support for a couple of days, second talking and alert the same day.
Easily put....first time was like being hit by a MAC truck several times, second like being hit by a pick up once!
-
Hi,
I just wanted to give a quick update for those of you who have been praying for my family. My niece (with leukemia) just finished her 1st week of in hospital stay for chemo. She is having a rough time - but many many people are helping her little family . My cousin with 3 brain tumors I have not heard anything about lately (and have not had time to call about because this week my 90 year old mother-in-law who lives in my town ended up in the hospital 2 times, then fell twice, went to Hospice until we could go find an adult family care center for her instead of the assisted living place she has been in for the last couple of years . We also had to go through and move all of her things out of the assisted apartment..... by yesterday). My mother (who broke her neck 8 weeks ago and just got into an assisted apartment with my dad) fell again Friday ....and my dad's dementia is getting much worse. They are so unhappy in Lacy, WA that I am going to go up to Tacoma in a couple of weeks to help my sisters find an assisted apartment for them there - closer to family and friends. Then help move them.
I know this sounds like a badly written book that no one would believe - but it is all too true . I am just grateful that it is summer vacation and I am not teaching right now. I do not have the physical stamina I had before surgery (and I'm older too lol). Trying to pack, and move boxes and furniture is much slower with only 1 balance nerve (most of you know what I mean)... and I have had some close calls with falling - but I didn't and that's what counts.
Thanks for all the prayers. I have high hopes that things will get better and slow down before the summer ends and I will actually get the rest I promised myself during this first teaching year after surgery. I did fit in my MRI last week - was tempted to cancel it (after all I didn't really want another one anyway lol) but got it over with and now just have to see the doctor in a couple of weeks.
Since having the AN diagnosis, long decision and waiting process, surgery and then recovery I have tried to learn to take one day at a time and find some good things in each day. That process helps me make it through the big 'mountains' in my life which seem to be the Rocky Mountains right now. Sometimes it sure is overwhelming though. Again, thanks for all the support and prayers.............I appreciate all of you.
marg
-
Marg -
I just don't know how you do it. This is so much all at once. I know it's hard, but try to take some time for you! You need to get some rest if you plan on being helpful to everyone else.
Maybe you can sit down with the involved family members and come up with a plan to divide the work so you aren't doing so much. I know I've found that people are more than happy to pitch in, but sometimes they don't know what to do to help. Just ask - I'm sure you'll find some good helpers out there.
I hope this gets better soon.
Lori
-
Marg:
I'm pleased to learn that you conquered your anxiety over another MRI and I trust the news was positive.
Dealing with aging parents and in-laws can be very stressful, as you've demonstrated, because you want to do whats best for them but there are always obstacles. Sometimes the folks themselves are the obstacle. The other relatives with life-threatening illnesses are another situation that can be simultaneously poignant and angst-inducing. Again, you just want to do the right thing for everyone - but find you have physical and physiological limitations that have to be recognized and respected. Marg, as much as you might wish to, you simply cannot be everything to everybody. I hope you'll employ the adage you referenced - to take it 'one day at a time'.
Know that our thoughts and prayers for you will definitely continue. I think you're doing a remarkable job under very trying circumstances - but don't allow the circumstances to overwhelm you. As Lori suggested, try to enlist other family members to help. Don't feel completely responsible for everything, all the time, because if you're not healthy, physically and emotionally, you won't be of much help to others. Now, please, take a break. :)
Jim
-
Lori and Jim,
Thanks so much for the support. I have had some help with my mother-in-law thing... her daugher came and stayed with us for 3 nights as we sorted through "stuff" at her mom's , looked for a nice adult home for mom and was here the day we moved the furniture (along with my husband, daughter, brother-in-law-, and 2 nephews) so there was some help. The main stress was that there were so many things to be done in such a short period of time and with no breaks for rest. I took time today for a massage and I am going to go to a acupunturist (sp) next week to see if she can help me with some of the problems with my facial paralysis and tinnitus (who knows, it's worth a try - and anyway it is supposted to help with stress). My mother-in-law is settling down in the adult home .... and seems happy there and has enjoyed all the attention- which also makes my stress level less .
I also found out from my sister that there may be an opening at an assisted living place in Tacoma in a couple of weeks -which means that I don't have to go up there and look at everything available in Tacoma. So it might just be moving my parents. I'm really glad because there is still a bunch of stuff to take care of here in connection to my mother-in-law (my husband and I are the only family in town.... which is why we do more ).
I got my appointment to see my neurosurgeon moved up to tomorrow and will see him then. I already read the report on the MRI (I got a copy for myself) ... and it seems there is a difference on the side I had surgery on ... but they couldn't identify wheather it is scar tissue - or remains of the AN. I'll ask my Dr. tomorrow and see what he says - but this report is saying the same as the one I had 6 months after surgery..... and the dr. told me the AN was 'gone' then - I'll see what he says this time.
I know that I can't meet all the needs and I have been asking for help more ..... and trying to put limits on what I can reasonably do (emergencies tend to run over all bounderies though don't they). I think the rest of the things I need to do can be done in a less immediate time frame - or someone else will have to do them :) their choice.
Again, thank you for all the support and prayers,
marg
-
I'm scheduled for my 1 year post radiation this month. If all is well, Dr advised that I would have a MRI every year for the next 4 years and all is the same. I don't need to come back anymore.
Is this normal or is he confidence, the tumor is dead.
-
I don't know what is normal following radiation.
I had surgery, so was wondering how other doctors handle their patients following a surgical removal of the tumor.
I may get the chance someday to find out what happens after radiation because I may need to have this residual tumor taken care of. I am considering Gamma Knife, but right now I am in a "watch and wait" mode.
During the past 3 months I have had two different doctors giving me very different opinions about what I should have done. One said Gamma Knife and the otherr said a second surgery.
Next week I am going to be seeing the neurosurgeon who removed my tumor to see what he thinks I should do. He is the one who released me two years ago, saying all he saw was scar tissue on the MRI's.
It appears that he was incorrect, but I would have just loved it if he could have been right, that all this is, is scar tissue.
This has been a very interesting experience with this tumor, an experience that I thought I could put behind me, but don't think so, not yet, maybe someday?
-
My neurosurgeon just released me on Wed. saying that I never need to see him again...and I never need an MRI again (unless I have a problem). I asked heim about the questionable change seen by the radiologist...since I had read the rssults too.. (radiologist said could be scar tissue or residual tumor)...Dr. said " You are fine .. it's gone". I am not quite so sure - so I plan to ask my ENT for another MRI in 5 years - just to check on things.
I don't think it is really ever over.
marg
-
Marg
Since your surgery was only a year ago, it seems like your surgeon would not be releasing you that soon. I have read where it takes at least 3 years to be sure the tumor is not coming back and most doctors seem to have their patients (following surgery) coming back the rest of their lives, from what I gather reading this forum. Seems like after 3-5 years they may have them get MRI's every 2 or 3 years instead of every year, if nothing shows up.
I think you would be wise to have more MRI's done, since it has only been a year since you had surgery.
-
Marg -
I agree with Gloriann. One annual post op MRI just doesn't seem like enough. I had surgery in 5/07 also and recently had my 1st annual MRI. After my doc reviewed the results with me he said "remember you need to have another MRI next year".
I know all docs are somewhat different, and I'm not questioning yours, but you may want to get additional MRIs.
Just my opinion,
Jan
-
Marg~
I was released by the doctor that did the surgery - but not until after 5 years! I still have my PCP do MRI's every few years...1 year out seems VERY soon! ???
K
-
Thanks -all of you..... I totally agree and plan to have more MRI's ... I guess waiting 5 years is too long - I think I will ask my ENT (who discovered the brain tumor in the first place) to set one up for me next year. My "gut feeling" was that my neurosurgeon was sending me off too soon. Thank you SO much for the imput.
Margaret
-
Hello everyone!
I am sorry it has taken me this long to get back to you, but we went on a two week vacation after I saw the doctor in Memphis and just got home 2 days ago.
The doctor in Memphis said he does not recommend any further surgery for this "residual tumor" (as he called it), and that Gamma Knife is definitely the way to treat it, if it continues to grow.
Nothing was said between us about why he released me two years ago. He may have recalled our phone conversation from that time. I was very honest with him 2 years ago about how upset I was, but I saw no need in bringing that up.
The main reason I went back to see him was on account of the other surgeon (ear) telling me recently that I should have another surgery done instead of the Gamma Knife. Now I have had 2 different neurosurgeons telling me that Gamma Knife is the way to go.
All of the doctors have told me that nothing has to be done right away since the tumor is so small, to give it another year at least and have another MRI done. Dr Robertson (from Memphis) said it is not impossible for these tumors to stop growing on their own. There can also be different measurements made from the MRI's from different doctors and radiologists, I found out, so I guess I have to take that into consideratin, but I don't need to wait too long and have the tumor grow too large for the Gamma Knife to be effective either.
So, this is where I am right now- "watch and wait".
-
Hi Gloriann,
I am glad to hear that you have a reasonably definitive answer now. Your recent doctor sounds sensible, and watch and wait, with an eye on radiation if and when needed, makes a lot of sense. Hopefully you can put your mind at ease for a while.
Steve
-
The doctor I just saw in Memphis is one of the two surgeons who operated on me back in 2001. I was thinking if I ever did have to have another surgery, I would prefer going back to him, instead of trying to use someone completely new.
He really upset me two years ago when he released me and said he only saw scar tissue on the MRI's. Then after I returned home (to Louisiana) and read the MRI report for myself is when I learned there was a residual tumor. I talked to him over the phone about it and found out that since he did not agree with this report he did not contact me about it, even though he received the report after I left his office. This is what really upset me, to think that if I had not read the report myself I would have just walked away with no more MRI's and still not know what is going on.
So it probably seems strange that I would go back to a doctor who did this, but I have to remember that after he did agree to look over all my MRI's again, when we talked on the phone two years ago. It took him a long time to get around to doing this and in the meantime I saw another neurosurgeon closer to my home, who was not sure if it was just scar tissue or recurrent tumor 2 years ago, but this year has said since it has grown he believes it is not scar tissue only. The surgeon in Memphis did finally get around to re-looking at my MRI's two years ago and sent me a letter stating he was really not sure if it was a recurrent tumor or not and that further MRI's were recommended. By that time I already had the appointment with the other neurosurgeon closer to my home.
I put this all out of my mind for two years, then had another MRI done this year in March, which showed a little more growth.
Bottom line is: both of the neurosurgeons I have seen (Robertson and Nanda) have recommended Gamma Knife as the way to treat this tumor if it continues to grow. Only my ear surgeon (Gardner) has recommended a second surgery.
I have been on a roller coaster ride with this since the first week of April, but I am going to give it a rest now, until the next MRI, which will be in the spring of 2009.
Thanks for all the support I have been given here.
-
Hi Gloriann,
Again I agree with you about the frustration. When I got my 1 year MRI report ...which I also read. It says that they can't be sure if the "shadow" where the tumor was is scar tissue or residual tumor. My neurosurgeon said the "tumor is gone and you don't need to see me again unless you have problems". I told him I had read the report - and what did he think of the MRI tech. saying it could be "residual tumor". My Dr. said "you're fine... it's gone.... you don't need another MRI unless you have problems". In the last couple of weeks I have come up with 2 thoughts about this. 1. I am going to have MRI's on a regular basis (every year or so to make sure that nothing comes back) for the next couple years...and then every couple years ...because since I am already SSD, have no balance nerve on that side and have tinitus I wouldn't know something was wrong until it was really bad and 2. I will go to someone else if I do have 'any more problems'. Gloriann, this is your body and continue to be proactive.... no one will care about you and you health as much as you do ! My problem is that I get so busy taking care of the "immediate, urgent" medical needs of my parents and my husband's mom that I don't always take care of myself....I plan to change that... I only have one life too and I have to take care of my health.
marg
-
Marge
I think you are very wise to plan on having more MRI's because just look at how many people on this forum have their tumors grow back. If there is any doubt I don't understand why a doctor would not want to make sure.
You are probably correct in thinking that you would not know something is wrong until it was really bad and the tumor would be too large for Gamma Knife by the time you realized something was wrong. The reason I say this is because it was only the last few months before my surgery that I had symptoms other than just the hearing loss.
My tumor was 4 cm at the time of my surgery and the bad symptoms came only a few months before that.
Take care!
Gloria
-
Thanks Gloria.... hope you can take a deep breath and just enjoy life for the present (that's what I try to do)....I don't want to waste my days by living in fear that the tumor will come back...if it happens I will deal with it then.... I do not want to let fear steal my joy in the present.
marg
-
Gloria,
Glad to hear you are settling on a treatment decision and can now have some peace of mind till next spring--sounds like you really need it! Also, there's no need to secondguess why you'd return to your original surgeon if need be--that's your decision and yours alone, and if that's who you'd be most comfortable with and confident in, then it would make perfect sense for you to choose him. (I'm glad that you're not facing another surgery, though! And I hope you can stay in watch and wait for a while and catch your breath...)
Marg--Just wanted to echo what everyone's said here about staying current with those MRIs, and that you are wise to do so iin spite of your doc's poor advice. I believed my large AN to have been totally removed in 1988, and only had 3 follow up MRIs over the years (both because I had moved out of state and wasn't really in anyone's care who might have requested the test, and also because I had no idea it was necessary) and apparently the stray cell or two that was left behind regrew and started causing symptoms 20 years later!
I just had my regrowth removed at the end of June, and my current neurosurgeon will follow me at what he calls "doubling intervals"--ie every 6 months in the first year, then every year, then every 2, 4, 8, 16 years as long as there are no symptoms and the films come back clean. I think that sounds about right--not an unnecessary number of MRIs, but also no "release from care" that involves not keeping track at all.
Carrie
-
I am sorry to hear of your shock after being told you were clear. I was told after 5 years that I would never need another scan because, as has been already said, the chances of regrowth are the same as any other person getting one. Although, after reading the posts on this forum I am not so sure.
Keep your chin up.
-
I thought I would try and get people caught up on what has taken place since I posted this. I had another MRI done in 2009 which showed NO GROWTH, but my 2010 MRI showed MORE GROWTH and it seemed to have picked up speed, increasing in size, so I had GAMMA KNIFE done in December of 2010. I had a few side effects, but nothing bad and am feeling good now, but I will not know if the Gamma Knife did the job until my next MRI is done in June.