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Joined: 10/10/2008
Posts: 19
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Hi I haven't been around much,just sliently in the background listening . I need some info if you please. I just had my 6 month MRI and according to the nurse practioner,at first, she said that everything was O.K. When I asked if it had shrunk,she then said that it was the same size as when I had radiation. I am having incredible dizziness/clumbsiness/big time balance problems etc. I fall or loose balance daily. Been to the vestibular treatment and into my 4th month and it is costly. I had to stop as I'm not sure it's helped. I did get sick for the month of October and it seemed that the balance/dizziness issues got worse. Don't know what to do next? (If anything?) Please advise Thank You in advance Claire
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Joined: 10/10/2008
Posts: 1435
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We would not expect for your AN to have changed size on the MRI. The balance problems are common, tendto go away over time, and in my opinion are one of the most troublesome problems associated with AN's and their treatment. We sometimes try a short course of steroids with variable results. The other useful things are the vestibular therapy you mentioned and low-dose Valium (2 mg three times a day is usually sufficient).
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 81
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Hi Claire and happy holidaze (in our AN case)..... hope you are doing ok. One thing I have learned about AN journey, in its entirety, it that the balance/dizziness goes hand in hand with the AN journey, since our hearing and balance nerves are affected. Too many on the ANA site, regardless of treatment options, note the issues post treatment (regardless if radio or surgical removal/debulk). Dr. Medbery just noted about short-term low dose Valium. I am one that had to try it out approx 4-8 mos post CK... and it did help. Was only for 2 wks, 2mg/am, 2mg/pm..... helped to "calm down" the dizziness (although it did not get rid of it). Vestibular exercises (noted all over the ANA forums) may be of help as well. Arushi has done a great post in the AN Community forum about yoga and exercises to help combat... as well as many others that have chimed in. Hang in there.... congrats on no enhanced growth on the MRI... time for the sinker to stop doing its thang. TGIF! Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 19
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Thank You for you advise. I guess I'll wait and be patient but I will be asking the dr. for the valium in the meantime. claire
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Clair.....I take 1/4 of a 5mg valium every morning and have had some positive results. It helps my tinnitus,balance,anxiety etc. It's sure worth the try. If you take to much I think it increases fatigue levels or feelings of fatigue though.........so I am careful to take only what is required as needed. The heaches are a real issue for me so I also take meds for that. I never was headache prone except for allergy/sinus pressure.....now I am......sometimes debilitating me. Yesterday....I overdid...today I am exhausted....can't navigate...dizzy....bad headache.........soooo must stay quiet and rest. It seems every day I must make adjustments for how I feel.......truly 1 day at a time. Just keep trying.....you will come to know your own circunstances in time. We are all different,yet the same. Keep coming back here........you will get the support you need. Judy
nanny5
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nanny5
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Joined: 12/19/2008
Posts: 1
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My mom has a neuroma in her ear canal. She has constant noise, has problems with her balance and has had quite a bit of hearing loss in that ear. She is thinking about having the cyberknife done. Will she lose the hearing in that ear completely if she has the procedure done? Thank you.
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Joined: 10/11/2008
Posts: 525
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There is a good chance that she can preserve the hearing that remains.
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 10/10/2008
Posts: 1435
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About 75% of patients retain serviceable hearing in the affected ear. That is about 15-25% better than with single fraction treatment on the Gamma Knife. Tumor control rates are the same.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Hi I've my share of problems with the site but the people at accuray are very quick to help. Now that I'm back,I have still another ? for the Docs........................... Having had my 6 month MRI last month and my hearing tested again last Monday, My Dr. informed me that my hearing has infact decreased in both ears and will be fitting me for a hearing aid in July when I have my 1 year MRI and hearing test. My question is that no-one told me prior to GK that I have a cyst within the tumor in my left ear. I'v read much about the differing opinion that the fluid should be drained, or whatever they do, before the radiation. Could this be a factor in my balance problems and dizziness? If so, what can be done now? Thank You in anticipation of your replys claire
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Joined: 10/10/2008
Posts: 19
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I'm not looking for a diagnosis but an approximate answerto my delemas. I've been trying different modalities without much luck and know that there are many of you that are/have been in my shoes. I got really scared yesterday when I had a tea,whiselling, pot on and didn't hear it whisell. It was on for FOUR (4) hours before I walked into the kitchen and saw the gas was on under it. By the grace of God, it was steel and didn't melt the pot,only the piece that you lift the lid with. However the area around was very warm. The stove,wall,oven&brolier area,the counter and had even extended to the dishwasher beside the stove not to mention the cabinets above and beside. I need to know what modalities are available that will help me in day to day life. I.E. door bell lights etc. Thaat's the only one I know of but don't know where to find one, unless it needs to be ridged. Thank you for any info. Have a great day Claire
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Joined: 10/10/2008
Posts: 1435
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Why are you losing so much hearing in the other ear?
Many AN's have small cystic areas and they are of no concern. Large cysts sometimes require drainage in order to be able to treat them successfully.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Dr. M. On the last MRI there saying I have another Acoustic Neuroma in the right ear. I have been progressively losing hearing in both since Sept.08 is when I noticed it but others have said it's been since the GK that they have noticed more loss. I have ringing in both ears,and have had, from the gettgo. Recently,a month ago, I've had alot of popping sounds in the right ear as well. Claire
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Joined: 10/10/2008
Posts: 1435
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I did not know or did not remember about the other AN. What are you going to do about it?
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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I guess my last post got lost in the red tapes? ?concerning the shrinkage of AN tumors after GK? Before treatment with GK the docs.were saying the tumor will shrink when/if radiation worked.NOW they are saying the AN won't shrink but may not grow anymore. To me ,one of the reasons I chose GK was because of their addiments about the shrinkage. Now I feel that I will have to wait until it grows again instead of it shrinking and being gone? WHY the double standard? Thany You Claire
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Joined: 10/10/2008
Posts: 1435
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When you look at an acoustic neuroma under the microscope, most of what you see is not actually tumor cells. So if you kill off all the tumor cells, then you are still left with the other stuff that won't change. Although these may shrink somewhat over time, that is just an added bonus. Our expectation is that they will not grow. Period. That is true with any radiation treatment.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Dr.M Thank You for the clarification. I think I understand it more now. It just seemed that so many people talk about the tumor being "Shrunk" that I guess that I had expected that to be the case in my first follow-up MRI after GK. I guess I'm ( so far) lucky that it hasn't grown since the radiation Have a Great Day Claire Still Sunny here in Philladelphia
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Joined: 2/3/2009
Posts: 2
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I am 6 months post-CK; my MRI recheck has shown no change in the size of my AN and no other lesions, but I continue to experience substantial hearing loss in the affected ear (though the tinnitus has disappeared). Had a hearing test this morning that confirms continued decrease in hearing since CK. Is this normal? Thanks.
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Joined: 10/10/2008
Posts: 1435
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It happens in about 25% of treated patients.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Dr M If this,hearing loss, happens in about 25% of AN patients,what is the prognosis? I am in that 25% group also. Thanks You in advance of your reply Claire
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Joined: 10/10/2008
Posts: 1435
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About 15-25% are left with hearing loss sufficient to prevent having ""serviceable hearing". There is really not enough good data on people who have lesser amounts of hearing loss.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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I recently went in search of info on hearing aids. There's bias on both ends of the spectrum but at the end of the day,although I wish it were different, the cost of the BAHA system vs.the hearing aid and what insurence will or will not pay for IS a determining factor. I wish I were not pushed towards the BAHA but medicare will pay for BAHA because it is an implant. They won't pay for the hearing aid. The surgery for the BAHA is very pricy vs. a hearing aid. Sometimes I just don't know where we are all to end up with this disparity. At this point in time I'm watch/wait for a second AN in my right IAC in as far as its' growth rate is determined. Balanc is atroshous (pardon the spelling) and I'm with a cane now. At night it's worse.I have to be careful standing/getting up from sitting and such. I don't know why their waiting to do something about the second AN? Again, I believe, at the end of the day I thank my lucky stars that I'm the way I am because there is always someone else with worse problems. This keeps me going. (Along with this site) Thank You for listening and to other new ANers,Stand strong. Claire
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Joined: 10/10/2008
Posts: 1435
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Do you have any idea which side is causing the balance problem - treated or untreated?
I agree with you about the insanity of being willing to pay for a pricey surgery rather than a hearing aid. I frankly also don't understand why hearing aids are so expensive. You can get a high end laptop for less than some of the hearing aids. I guess it is the usual pricing of the marketplace. My mother does have some friends who saved money on hearing aids they both needed by buying only one remote, thus resulting in some funny social situations.
When it comes to a second AN, lots of people wait until they are forced to treat because of fear of causing profound bilateral deafness, which is a real risk although not all that common.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Dr.M I think it is comimg from the left treated AN but I also feel fullness and ringing in the right,untreated, AN ear. I'll be seeing the audiologist next week for copies of all of my results from the hearing tests that I've had to date. Right now, I really don't want the surgery but as I've said before, the cost is significant and, right now, my only option. It won't be as if I'm the only one in this perdicament and I've got great support from those on the AN support boards. When you say they bought ONE remote (?) is that one hearing aid? Thank You for replying Claire
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Joined: 10/10/2008
Posts: 1435
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No, they bought one remote for TWO hearing aids, so they shout across the room at each other to turn it down or up.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Dr M i guess I need to really look into the hearing aid parts because I'm a little confused with regards to the "Remote." I've been checking into the Baha System as a probability but have not yet discounted hearing aids. I have also been teaching my grandbambinos to sign as I see in the near future it will be thge only way to comunicate with them.They are 2 yrs and 3 yrs. old and are picking it up rather quickly. We make a game out of it. Well, time for bed, so I'll be seeing everyone in the a.m. Take Care Claire
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Joined: 10/10/2008
Posts: 1435
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I was going to try to paste something here that said Good luck in ASL, but couldn't find out how. Also was afraid I would confuse Good luck with Gorilla. Oh, well...
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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It's the thought that counts claire
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Joined: 10/10/2008
Posts: 19
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The paste/copy would simply say "Good Luck" *) I 'm not type challenge,I can not hear *) Have a great day Claire
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Joined: 10/10/2008
Posts: 1435
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I know, but I wanted to do something special. Just could not figure out how.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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You already have. Claire*)
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Joined: 2/3/2009
Posts: 2
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My ENT (not an expert in CK, admittedly) surmised that the Cyberknife radiation caused vascular damage near the AN; the restricted blood flow led to more nerve damage and thus hearing loss. He has put me on a vasoconstrictor and told me to take an aspirin each day to hopefully prevent further hearing loss. I'll probably need to get a hearing aid soon.
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Joined: 10/10/2008
Posts: 1435
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Was there fluid in your ear? If not, then I doubt a vasoconstrictor is going to help. The mechanism of hearing loss may be related to vascular changes, but more likely to cochlear damage.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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Hi too all It's been awhile,along while, since last post. I had GK 18 months ago and went through all the ranges from loss hearing,loss balance,H/A's and then some. To the docs... I thought I made it through the really tough parts of my Left AN but recently have noticed that the unbalance and wonky feeling in my head have started coming back. I tried vestibular treatment with no help and was finally put on Meclazine 25mg.'s at 9 months post GK. This has helped but as I said about 3 months ago everything started all over again. Is this normal? Thanks for your input It's always sunny in PA Claire a
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Joined: 10/10/2008
Posts: 1435
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Get them to try you on 2 mg of Valium three times a day. We have found that it works pretty welL, and that does is really not sedating for most people.
THe symptoms you describe are not uncommon, but the time course is highly variable. This is one of the time frames where some swelling is not that unusual.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 81
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Hey Claire I have to agree with Dr. M's comments about low dose (2mg) Valium, taken a couple of times per day. I was one that had to go on it for a couple of weeks to help with enhanced "wonkiness" months down the road, post-CK. Combined with vestibular exercises my neuro-onc gave me, it did help with calming down the wonkiness... and never came back. For me, it definately helped. As we know, "individual results may vary", so if by chance you try it, here's hoping it helps! Hang in there! Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 19
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Hi I was in touch with my neurosurgeon today and he'll be sending me a script for the valium. I hope it helps. Thanks As Usual, It's always sunny in PA Claire a p.s. I'll let you know how it works out.
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Joined: 10/10/2008
Posts: 1435
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I must have been in PA at bad times ;-)
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 19
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You need to visit the southeastern area .
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Joined: 10/10/2008
Posts: 19
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Hi I'm going for my brain MRI tomorrow and am nervous. The neuro. and oncologist determined that the AN has probably swelled or grown some. I wish they didn't tell me that...but it is what it is. (I guess) At any rate,while I'm in Philidelphia, I'm going to check out fabric roll. That's if I don't have any reaction to the injections. Stay well.. It's always sunny in philli Claire
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Joined: 10/10/2008
Posts: 1435
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I doubt there is any growth.
Let us know.
Is a fabric roll anything like a lobster roll? (Not that familiar with northeastern food)
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 81
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Hey Claire Good luck with today's MRI... nothing to be nervous! Plu-eeeeeeze keep us updated on what the team says... and "fabric" roll? new one to me? Dr. M.... didn't you have lobsta' roll during your last trip to Bawsten? I thought you were more familiar with the wonderful culinary cuisines of the NE than you note...  Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 1435
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I did not have a lobster roll. But did have some wonderful fried oysters at Ye Olde Union Oyster House.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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