Author Topic: Very worried  (Read 23871 times)

Cruzinpa

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Re: Very worried
« Reply #45 on: January 31, 2017, 05:14:21 am »
Wilbur - I'm so sorry to hear it. Our surgeries were close(mine being the 20th of Jan, on east coast, for a large AN). I had an extremely rare side effect with swelling and had to be put on a breathing tube for first 2 days. Things get better most days and I hope they get better for you too.

ANSydney

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Re: Very worried
« Reply #46 on: February 02, 2017, 04:17:23 pm »
Wilbur, undoubtedly you are diverted as you handle a bunch of problems following surgery, so only respond when you are ready. I, like others here, are hoping that things improve for you.

I'd be interested to hear if the facial nerve wakes up and how things are going. Also, where did you get surgery and who was your surgeon/s?

All the best.

lilith

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Re: Very worried
« Reply #47 on: February 06, 2017, 10:55:59 pm »
Willbur,

I hope things are improving little by little.

All the best,

Lilith
33mmx19mm AN (Diagnosis 5.05.2016)
Radiosurgery in Mexico City: 25.05.2016
Pre and post-radiosurgery: little bit of imbalance, mild hearing-loss, wonky head.

KeepSmiling

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Re: Very worried
« Reply #48 on: February 09, 2017, 12:55:38 pm »
My spouse was treated in July-Aug 2013 with 28 sessions of fractionated Proton Therapy at the The Massachusetts General Hospital Francis H. Burr Proton Beam Therapy Center in Boston- for a 1.5 cm vestibular schwannoma , also known as a acoustic neuroma. His outcome - very very good. He did not miss ONE day of work- he worked every day during each treatment (he used the cancer library computer to set up virtual office/participated in teleconferences)  The treatment took as long as a lunch hour at work. He had no side effects. NONE. No swelling of the tumor after proton treatment..NONE. He is still well- even now in 2017.  Read more about this by looking at my posts under the alias of Keep Smiling.
If you consider proton therapy -
 -Usually you send your MRI to a Proton Center and ask for consideration (for us it was free of charge) At a proton therapy center, a team of doctors evaluates and decides (usualy within 2 weeks) whether the patient is ideal for proton treatment and then a consultation is scheduled, if your insurance is able to cover it.
-The team of docs obviously considers many variables. Not all Acoustic neuroma patients are considered to be ideal candidates for proton therapy. Your tumor might be too big for it, but then again only a team of doctors could evaluate this. If you are considering Proton Therapy , given the size of your tumor it would be prudent to quickly send in your MRI's for a case study review. I would suggest that you send the MRI via overnight mail with signature receipt requested and follow up with a phone call.
-Insurance hassles were very tricky. We dealt with lots of struggles but in the end Aetna covered everything. It was no picnic.

Are you trying to research this from all the angles? Give this a try- the pubmed search tool (: http://www.ncbi.nlm.nih.gov/pubmed/)  Learn how to read the studies. Learn the medical lingo. Get help from google about things you don't understand. Try hard to find patients who had bad outcomes from various treatments- send them a private message asking to speak to them.

Be aware that there is a bias towards treatments other than Proton Therapy at this discussion forum. More often than not some of the ANA members will give you advice and warnings about Proton therapy and how it is not exact enough, about how there are margin errors.  Ask deep questions...and you will discover how often Proton Therapy  is used in children with cancer, whose lives depend on whether the toxic radiation does not contaminate good brain tissue....

Things to ponder-
-  The tumor remains stable and doesn’t growth after Proton Therapy. Most people want to get rid of the tumor, however, is there anything wrong with having the tumor there, inside your head, if it never grows and it doesn't bother you in any way? It is food for thought.

-Theory-More AN patients would probably get proton therapy if there were more Proton Centers. Once Proton Therapy is more convenient and less expensive it might be the gold standard to treat vestibular schwanommas.

-There are many proton therapy centers being built around the world. (see http://www.proton-cancer-treatment.com/proton-therapy/proton-therapy-around-the-world/clinical-proton-centres-being-built-and-planned-centres/) The construction of these centers requires significant $ investment.  If you research, you will find some negative comments about how Proton Therapy has doubtful outcomes for patients with certain problems, such as prostrate issues.  Consider how proton therapy could be efficacious for one medical condition and not for another, and also possible biases of the commenters. Research this and try to uncover unbiased statistics and facts.  Get on the Internet and research current info with through a critical lens. Obviously I am in favor of Proton Therapy because of my husband's good results.  Maybe it makes sense to try to find people who have suffered and had a poor outcome from Proton Therapy. See f you can find any "warts". 

-It is likely that the proliferation of new proton centers would threaten the revenue stream of medical providers of cyber knife, gamma knife and neurosurgery. The number of patients who have vestibular schwannomas and who then get Proton Treatment  seems to be small. Other treatments seem favored, but it could be wise to ask if this anti-proton therapy bias is because of people suffer with poor outcomes after Proton Therapy or if it is due to other reasons.

- Time slots are highly coveted for proton beam treatment. It seems the teams of doctors who review case studies and decide whether a patient is a good candidate for Proton therapy MAY favor accepting other "needier" patients- for proton therapy, rather than AN patients. For example, Proton Centers are filled with children with cancers. It may well be that the AN patients are shuffled off to other treatments since there are other ways of treating acoustic neuromas are available (Gamma Knife, Cyber knife, etc).

It is conceivable that very soon there could be a newer innovation that is even better than Proton Therapy. Proton Beam Pencil is the latest type of Proton Therapy- and it may soon be developed for use on head/neck issues. Stay on top of the research. Keep reading and investigating.

Immerse yourself in comedy. I suggest that you get Netflix and binge watch the TV Show called "Chuck" . Norm Cousins built a strong case for the healing power of laughter : https://www.youtube.com/watch?v=mqLAcpXzNks

Best of luck!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Willbur

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Re: Very worried
« Reply #49 on: February 09, 2017, 08:16:28 pm »
I've heard of these proton centers. They're actually building one in Dallas. I didn't know this could be used to treat vestibular tumors.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

KeepSmiling

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Re: Very worried
« Reply #50 on: February 17, 2017, 09:14:40 am »
Proton Therapy may or may not be for you. Whatever you decide- best of luck.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

jim j

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Re: Very worried
« Reply #51 on: February 17, 2017, 02:10:09 pm »
I have been on this site for a number f years.  I had a 11 hr surgery on a large AC that was pushing on my brain stem. I lost most my hearing before surgery.  It took me 1 year to get what facial paralysis i had and regain my balance issues. I have always dealt with residual headaches and dizziness. I had the tumor grow back and had to have gamma knife done 1 year ago this month 02/2016.  I am becoming very depressed as I have been very dizzy balance issues are worse and headaches all the time. I explained to the Dr that I feel as if i just got off the scrambler. I don't sleep well but when i wake up i wait to see if things are better I get up and it all starts over I am exhausted feel like i just got off the ride and frustrated. I have what they think is a cyst on my facial nerve after gamma knife it was found. The cyst lyes right on the facial nerve where it goes into the brain stem and I am going back for another MRI to evaluate as to weather it is a cyst or part of the original tumor that was not seen before gamma knife. I don't know if anyone feels as I do but this does not allow me to do much and I am frustrated.I went for another opinion and was told I was in good hands with my Dr but i wanted to know is this normal are there others that have these side effects.I want to know is the exhaustion normal my left eye sight is not as good as the side without the tumor my eyelid drupes a little and again is anyone feeling such exhaustion or not. Dizziness or not headache or not? Anyone with issue please tell me if I am not alone.If this continues what do I due and why did a psychiatrist tell me not to have gamma knife? Any answers would help. Thank You

Willbur

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Re: Very worried
« Reply #52 on: February 17, 2017, 05:56:35 pm »
I have been on this site for a number f years.  I had a 11 hr surgery on a large AC that was pushing on my brain stem. I lost most my hearing before surgery.  It took me 1 year to get what facial paralysis i had and regain my balance issues. I have always dealt with residual headaches and dizziness. I had the tumor grow back and had to have gamma knife done 1 year ago this month 02/2016.  I am becoming very depressed as I have been very dizzy balance issues are worse and headaches all the time. I explained to the Dr that I feel as if i just got off the scrambler. I don't sleep well but when i wake up i wait to see if things are better I get up and it all starts over I am exhausted feel like i just got off the ride and frustrated. I have what they think is a cyst on my facial nerve after gamma knife it was found. The cyst lyes right on the facial nerve where it goes into the brain stem and I am going back for another MRI to evaluate as to weather it is a cyst or part of the original tumor that was not seen before gamma knife. I don't know if anyone feels as I do but this does not allow me to do much and I am frustrated.I went for another opinion and was told I was in good hands with my Dr but i wanted to know is this normal are there others that have these side effects.I want to know is the exhaustion normal my left eye sight is not as good as the side without the tumor my eyelid drupes a little and again is anyone feeling such exhaustion or not. Dizziness or not headache or not? Anyone with issue please tell me if I am not alone.If this continues what do I due and why did a psychiatrist tell me not to have gamma knife? Any answers would help. Thank You

Jeez sorry to hear that as I thought my situation was bad. I hope mine doesn't regrow, but the doc said it shouldn't because there wasn't any blood flow to it so I hope he's right. I also hope I don't have NF2 either.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

mrwva17

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Re: Very worried
« Reply #53 on: February 25, 2017, 08:21:05 am »
Good morning Wilbur.

I was just wondering how you were now that I think you are about a month out since your surgery. I truly hope all is well and your recovery is improving daily.
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

Willbur

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Re: Very worried
« Reply #54 on: March 05, 2017, 04:26:21 pm »
Good morning Wilbur.

I was just wondering how you were now that I think you are about a month out since your surgery. I truly hope all is well and your recovery is improving daily.

Doing great now. No speech issues. I get tired easily which I never had after surgery (because I was in pain). I'm back at work, moved into new house, back to grilling and smoking meat. I didn't go back to PT because it didn't help me. I'm going to get my staples out and a CT scan to make sure I don't have fluid in my brain. Thanks for asking.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANSydney

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Re: Very worried
« Reply #55 on: March 05, 2017, 05:01:41 pm »
Great to hear Wilbur. Sounds lie your getting back into it.

 Just after surgery, you had facial paralysis - how's it going? Do you have blink?

Willbur

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Re: Very worried
« Reply #56 on: March 05, 2017, 07:27:18 pm »
Great to hear Wilbur. Sounds lie your getting back into it.

 Just after surgery, you had facial paralysis - how's it going? Do you have blink?

It's coming back really fast. Had issues with eye but those are pretty much gone now.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANSydney

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Re: Very worried
« Reply #57 on: March 05, 2017, 08:08:22 pm »
That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.

I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.

Willbur

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Re: Very worried
« Reply #58 on: March 06, 2017, 07:24:49 am »
That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.

I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.

Wait on the surgery if you can. I regret doing it right away, but the docs were like "You're going to lose you're facial movement if you don't get it out"
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANSydney

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Re: Very worried
« Reply #59 on: March 06, 2017, 05:21:59 pm »
That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.

I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.

Wait on the surgery if you can. I regret doing it right away, but the docs were like "You're going to lose you're facial movement if you don't get it out"

Thanks for the suggestion Wilbur. One of my favorite quotes is from Dr Michael McKenna, in the video at https://www.anausa.org/resources/videos/support-group-video-library. The quote is, “The best treatment is no treatment, if you can do it”. Interestingly, the word "can" appears in both his and your statement.

It is interesting that the doctor thought without treatment you would loose facial movement. I can't recall any facial nerve issues that you had before surgery. The article at https://www.ncbi.nlm.nih.gov/pubmed/18559028 concludes "An initial period of conservative management is a safe and reasonable management policy in all acoustic neuromas up to 2 cm in size at the cerebello-pontine angle. Given that there are no failsafe ways of deciding potential for growth in acoustic neuromas, initial conservative management of these tumours offers superior hearing and facial nerve preservation when compared with primary surgical treatment."

In the end, you took a valid option and it looks like you're recovering well. I hope that in the months ahead you fully recover. Keep us posted.