ANA Discussion Forum
General Category => Inquiries => Topic started by: sher on June 17, 2008, 07:53:58 pm
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I am wondering if anyone knows what happens when the AN effects the brain stem?
Thanks,
Sherry
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I guess the answer is : it depends
The most common effect is a poor balance, almost
drunk like walk or movement.
Others would talk of headaches or feeling sick
A whole new batch would involve the part of the body
which that nerve (the bit being compressed) looked after
So maybe the left foot is a bit numb or not as fast/strong
moving as the right side
In most cases, if the compression is minor the effects are
gradual and minor(these things grow at 2mm per year ?)
- its the massive swelling post car-crash or similar
that can dangerous
Overall its how big is the tumour, how quick is it moving
and where is it compressing (and how tight is the space
at that particular point)
Best Regards
Tony
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Not to purposefully try to scare you or anyone else, but I would add that the brain stem takes care of a lot of the body's higher functions. If I remember correctly, these include pulse rate, blood pressure and breathing (lung function). So an untreated and growing tumor eventually kills by destroying the brain stem's ability to provide these critical functions, although this typically takes decades. The tumor would typically have to be absolutely enormous to have this effect on the brainstem, and they only grow on average 1-2 mm per year (some don't grow at all after being discovered). Unfortunately, some grow faster than average. Mine grew 2-3 mm along each of the three axes of measurement in just under 6 months. When my first followup MRI (taken in May) revealed my tumor was now pressing against my brain stem, that prompted me to stop watchful waiting and schedule treatment.
I guess I've won the s**t lottery twice. First by getting a tumor that only 1 in 100,000 people get (like everyone else on this board) and second by having one of the relatively few that show accelerated growth.
Sorry to vent. I get CK in less than three weeks and am a bit highstrung over it.
Tumbleweed
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Hi Sher-
My tumor was pressing into my brainstem and it affected my heart rate, balance(I was like a bull in a china shop), I did feel sick a lot, My arm & hand would "fall asleep" for no reason, I dropped things all the time--it was like my hands would just let go, and I was always very tired. Not sleepy, just "drained". No hearing issues except for the occasional ringing when you say "someone's talking about me". And no headaches. Now, I am more graceful, I haven't been sick at all since surgery, My arm doesn't go to sleep, I don't just drop things anymore and I'm not tired all the time.
That's just my experience with brainstem involvement.
Sincerely,
Shye
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Hi Sher,
Great question! From reading about AN patient experiances here on this forum, AN symptoms can vary widely between individuals. With a host of things along with the "normal" hearing and balance issues. My AN was tucked up in the CVA angle, so it was next to the brainstem. And I had several "aura" episodes, where an arcurate shape flashed in my field of vision with an odd geometric pattern (Scintillating Scotoma, http://en.wikipedia.org/wiki/Scintillating_scotoma ). I had about 5 of these episodes, and they would last about 30 minutes. I had one aura event about 10 days after surgery, and none since. So I don't know if the AN pressing slightly on the brainstem was causing the aura, or if it was serendipity and related to something else.
Regards,
Rob
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Sher~
My brainstem was all the way over to the left side of my head - I had a LOT of symptoms, but didn't know it. My balance was awful - I could be standing with a group of teachers at recess and I would just stagger back! WEIRD things too, though, that didn't happen after surgery LIKE: I was SUPER susceptible to strep throat - I would get it ALL the time (the other teachers would send me notes not to come to their rooms if a kid had gone home sick - this was BEFORE I was diagnosed) - they even had to postpone my surgery because I got it! Have NEVER had it since!! Isn't that weird? Also, I had a HORRIBLE pain in my left shoulder - couldn't carry anything on that arm - we went backpacking the summer before I had surgery and I couldn't even carry a backpack! Don't have that problem now!! I think all of that was because of the brainstem displacement. Mine was pretty severe & I had surgery within a week of being diagnosed...my brainstem is still a little (but not like it was) to the left!!
K
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Hi Sher.
I had high blood pressure and an irregular heart rate as a result of my brain stem looking like the letter "C". I had been treated with medication for a few years to control both, but no one ever bothered to find out the cause of these things. Amazingly, since surgery, and my brain stem looking more like the letter "I", I no longer have high blood pressure. I still take the medication to regulate my heart rate, but that's only because I'm afraid if I stop taking it, I'll have the horrible palpitations and racing heart I had before. Once I get over my fear, I'll try to wean myself off of that.
And, Kay, I guess you'll always be a little askew!! :D
Lori
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One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob
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One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob
Rob, are you a lawyer or a politician, by any chance? :D That really makes things crystal clear! :D
Lori
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One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob
Rob, are you a lawyer or a politician, by any chance? :D That really makes things crystal clear! :D
Lori
Well, Rob did say that "AN symptoms can vary widely between individuals" and that was very clear ;) Plus he was absolutely correct!
I'm just amazed at the different symptoms people had prior to being diagnosed. Other than diminished hearing, a feeling of fullness in my ear, and some balance issues I was not even aware of I didn't have any "unusual" symptoms.
Jan
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Sher:
According to the MRI, my AN was pressing hard on my brainstem but aside from SSD, my only other symptoms were acute disequilibrium, fatigue and a loss of the sense of taste. The neurosurgeon told me that my brain was pushed to one side of my skull and that CSF 'gushed' out when he made the incision that opened my skull, because the fluid was so compressed. Fortunately, none of this caused me any post-op problems.
I have long known (from earlier research and reading posts on these forums) that AN-related brainstem compression has many symptom variations in individuals. Symptoms are only an indicator that an MRI is required. The MRI tells the doctor what is actually happening.
Jim
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Sheri,
My AN was visibly pushing in on my brainstam on my MRI but I don't recall any symptoms other than the hearing loss and a few bouts of vertigo. Well...maybe a little stiff neck but that was it.
Like Tumbleweed said though, the brainstem is a crucial juncture in the body. A friend of mine that is an ER doc said that one of the first things that they learned in med school was that the brain stem is sort of like the bodys 'on-off' switch. If it gets cut off, so do all of the involuntary organs below like the heart, lungs, kidneys and all of those other sort of essential thingies. ;)
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My tumor was on my brainstem. I had some minor balance issues, had neck pain for about a year and started to lose my hearing but otherwise I felt I had good health. The brain tumor was pressing against my spinal cord and causing the neck pain. I did have a bump on the back of my head for years and it no longer is there so I would assume that bump was from the tumor. The dr never would confirm that.
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Now that I think of it, I have had heart palpitations and shortness of breath on rare occasions (but happening a little more frequently now) for the past several years. Perhaps this has been caused by the tumor. Another wierd thing is that I seem to be getting more clumsy. It's as if I'm not quite in my body and aware of where my body is in the surrounding space. I'll walk into a room and hit my hand on a chair or table as I walk by it. And I find I'm starting to drop things more. I'll pick up a pencil and it'll fall out of my hand, and I wasn't even aware that my grip wasn't tight enough.
Most of these symptoms (with the exception of the heart palpitations) are subtle, making me question whether I'm just reading too much into general clumsiness. But I wasn't this clumsy a few years ago.
The more I learn and realize about my condition from reading posts on this board, the more resolved I am about getting treatment in a couple weeks. But it scares the hell out of me to think about getting radiation treatment. I suppose the alternative (doing nothing) is even worse. :(
Tumbleweed
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Another wierd thing is that I seem to be getting more clumsy.
I think the clumsiness is quite common with ANs, and generally results from effects on the balance nerve. I still manage to bump against door frames fairly regularly when I'm walking quickly and (try to) turn sharply into a doorway.
I wouldn't be that scared of the radiation treatment. It is a very high tech procedure, and the radiation really is focused on the AN, which deserves to be blasted by it. The side effects are mostly mild. It'll go well.
Steve
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Tumbleweed -
I could be completely wrong about this, but IMO the clumsiness is related to balance issues. I found that I was doing some of the same things you mention prior to being diagnosed with my AN.
Question - are you scared about radiation specifically? or treatment in general? Your post makes it sound like you are doubting your decision to have radiation, but I'm not entirely sure that that is what you are saying.
Jan
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Thanks for your reassurances, Steve. Man, do I need them. It helps.
Sincerely,
Tumbleweed
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Hi, Jan:
I'm afraid of what the radiation will do to healthy brain and nerve tissue. And, yes, I've flipflopped several times in the past 10 days over getting treated. But I am crystal-clear that CK is my preferred treatment. I just want the damn tumor to magically disappear so I don't need to do anything! ::)
I realize my emotions are all probably very normal. And logically, I've come to the space where I feel I should now get treated and soon. I just get these little rushes of poisonous adrenaline when I think about having beams of radiation enter my brain. I think I've watched too many old news clips about the horrors of Hiroshima. :D
Does anyone know how much radiation each beam from a CK machine delivers to healthy tissue on its way to the focal point (the tumor)? Compared to X-rays, for example? Knowing this might calm me down (or really freak me out, depending on the answer! :) ).
Thanks,
Tumbleweed
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Tumbleweed~
When I was 1st diagnosed the ENT/surgeon and the Balance Center both asked me if I had been dropping things - speciafically if I had been dropping pens & the soap in the shower a lot??
K
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Sounds just like me, K. I wonder if I'll get any less clumsy after treatment (if the tumor eventually shrinks)?
Tumbleweed
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Does anyone know how much radiation each beam from a CK machine delivers to healthy tissue on its way to the focal point (the tumor)? Compared to X-rays, for example? Knowing this might calm me down (or really freak me out, depending on the answer! :) ).
That's a sensible question, and I worked it out one time myself. If you have 6 Gy per day, with 150 beams, then the areas away from the tumor each get hit by one beam, or about .04 Gy, usually written as 40 mGy. A typical CAT scan of your belly for a kidney stone (had one) is also about 40 mGy.
So very roughly, the rest of your brain is getting the equivalent of 3 or 4 CAT scans during the week of treatment. You don't want to repeat that every week, but it is low enough to be tolerated well by most people, and should not do any damage.
I don't know if that is really a fair calculation, you would need to get into it with a radiation oncologist to get the true exposure levels away from the tumor, but I think it is a reasonable ballpark estimate.
Steve
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Steve, thanks a lot for sharing your calculations. Your logic makes sense to me. That said, Dr. Chang told me 7 months ago that he would treat my AN with a dose of 11.5 Gy per treatment. So, using your math, my healthy tissue will be getting the equivalent of around 6 CAT scans over the course of 3 treatments.
But it might not be that much, anyway. Dr. Chang also told me at the time that the total biologically equivalent dose is not arrived at by simply adding 11.5 + 11.5 +11.5. In fact, the total would be "only" 18 Gy. So maybe 6 CAT scans spread out over 3 days only equals the same as getting about 3 CAT scans at once. Pure conjecture on my part.
Do you know if the CK machine at Stanford delivers 150 beams, or was that just a wild guess?
Also, how much radiation does a CAT scan deliver vs that which an X-ray delivers?
When I go for treatment, I'll try to remember to ask my RO to put this in terms we laypersons can understand. If I learn anything worthwhile, I'll report it back to the group. Would be valuable to know.
In the meantime, I'm heartened that, by your calculations at least, the dose to healthy tissue isn't equivalent to, say, 100 CAT scans. I was kinda imagining the worst, so you've set my mind a little at ease. Thanks again, Steve.
Best wishes,
Tumbleweed
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11.5 Gy per day ? ??? I haven't heard of more than 6-7 Gy for the 3-day Tx.
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My brain stem was a letter S before surgery. I had weird symptoms that could not be explained as being AN tumor symptoms but “possibly� brainstem related.
(CISS) = Completely Improved since surgery
(SISS) = Somewhat improved since surgery
• Inability to sleep through the night (CISS- after 8 months post op)
• Constipation (CISS)
• Weird Sensation of water droplets falling on my head (CISS)
• Sharp pain between shoulder blades (SISS)
• Clumsiness after 3 pm e.g. dropping dishes and utensils while preparing dinner etc.(SISS)
• Injuring knee, back and hip due to unrealized balanced issues eg. catching myself (SISS)
• Heart palpitations (CISS)
• Facial flushing after eating (CISS)
• Fatigue (CISS)
• Feeling as if I was ADHD (CISS- I think this was more related to the sleep deprivation issues)
• Scattered- short term memory issues (CISS- I think this was more related to the sleep deprivation issues)
I honestly have to say that it was at 9 months, after surgery, that I finally felt like my old self again.
Daisy Head Mazie
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Hi Tumbleweed,
The 150 beams was a wild guess. Unlike GK, the treatment planning for CK allows as many or few beams as needed. They can move the head anywhere and shoot any angle, so the planning program just works out what arrangement will deliver the most zap to the tumor and the least zap to the surrounding anatomy. Tone Control once reported something like 300+ nodes in his plan, but I'm not sure what that really means. 300 beams??
I haven't heard of 11.5 Gy per day either. Maybe it was 7.5? I do know that the Gy per day can't be just added up. My treatment of 3 days x 6 Gy was considered equivalent to 1 day of GK at 12-13 Gy, using some mysterious math known only to the radiation oncologists. I would leave the calculations to the pros who actually know what they are doing. :)
If you do get some layman explanation of all this at Stanford, it would be good to hear about it.
Steve
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11.5 Gy is what I noted Dr. Chang told me during our initial consultation by phone. (He was one of the doctors who reviewed my MRI for free, bless his heart, and I ultimately chose him to treat me.) It's possible but unlikely that I misunderstood, as I am very methodical. Also, he cited 18 Gy as the total biologically equivalent dose I would get, which I believe confirms a higher daily dose than 6-7 Gy.
I'll know in a couple weeks and will report back to the group after I get treated.
On another note, I'd been having some misgivings about being treated sooner rather than later, but that's not the case any more. Yesterday, for the first time in 4 years, I became quite dizzy and was feeling totally wiped out. That convinced me I should get this thing zapped ASAP. In a way, my worsening symptoms were a blessing, because I now am 100% resolute in my decision to get CK in a couple weeks.
Best,
Tumbleweed
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Tumbleweed -
I am thrilled to hear that you are 100% certain of your decision ;D IMO that's exactly where you want to be before you journey into any type of AN treatment.
After your last post to me, I have to confess, I was a little doubtful that you were 100% sure. I almost responded to your post last night asking if you were confident in your choice, but I didn't want to "push" the issue. Today I know that you are confident. It's a wonderful feeling, isn't it?
Please report back to us after the CK; we like to know how our fellow forumites are doing.
Best of luck,
Jan
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Tumbleweed,
I am assuming that you are travelling for this... (correct me if I am wrong)
First time I was at Stanford I paid a fortune on accommodations and car rental. I was not too in-the-know about Palo Alto and Stanford and wish I had networked with experience Stanford patients, omn the forum, before hand.
Lorenzo told me about Stanford House, where he stayed
http://www.stanford.edu/dept/rde/guesthouse/
(You have to give you doctor’s name to register as a guest and for the medical patient rate)
I just stayed there for my follow up MRI and it was a good choice. I wish I had known more about it before treatment. Still the apartment we rented allowed me shaded and paved places to walk with a walker and my husband to cook as I was having surgery compilations -that you will not have since there will be no incision or craniotomy performed. It was pleasant. The rooms at Stanford House are small but the place is tasteful and restful. There is not a lot of shade to walk in and the paths are gravel. The hotels rates in the summer, close to Stanford are outrageous… so be sure to book your rooms as soon as you know of your treatment dates. Book an extra day that you need- as you can always cancel later if you feel good to return home sooner. If you end up not feeling well and needing to stay longer they may be booked up and you are stuck with no room... You do not want this- thus book an extra day. They were also pretty flexible on check out times, with me, when my medical appointment went overtime. The ENT department just called their front office on my behalf. There is a shuttle bus that will take you from there right to the hospital and ENT departments etc.
Remember to keep all parking, cafeteria, coffee, accommodation, taxi receipts etc. I claimed ALL of these on my tax return. If you rent a car I can give you tips on that one too.
If you have any other logistic questions about Stanford or the SJC airport there is a group of us that can inform you of the ins and outs.
Also know that the most affordable and best cafeteria on campus is at the children’s cancer hospital- and it has a beautiful cheerful patio. The coffee in the cafeterias is awful and you are better to get your coffee at the various n campus coffee bars.
The Courtyard Cafe - located on the ground floor of LPCH.
Open 7:00 am - 7:00 pm, Monday - Friday and 7:00 am - 3:00 pm, Saturday and Sunday.
Here is a link for food
http://cancer.stanfordhospital.com/forPatients/amenities/cafe/default
Off campus (restaurants there are pricey)
http://www.paloaltoonline.com/restaurants/
I packed breakfast items for Stanford house. There is an eating area with toasters and microwave downstairs. Also for an extra $5/ night you can get a little fridge and microwave in your own room.
Internet connection while in the hospital area
http://cancer.stanfordhospital.com/forPatients/amenities/cybercafe/default
The Stanford House has free wireless
PM me if you have any questions. I was not a GK patient as I am from the “crater lake size hole-in-the-head� group :D - nevertheless I can give you tips on parking, food on campus …and what you should pack to reduce costs ahead of time. Steve would also be a good contact for you. Those California Gamma Rays left him with such a kind, gentle and SUNNY disposition… I am glad he and I are within the same Greater Metro area… I have met him and I think he would be a good buddy for you to have at the end of your cell phone while at Stanford…
Keep moving forward…
Daisy Head Maizy
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Tumbleweed,
If your effective dose is 18 Gy (versus my 12 Gy) then it makes sense that your daily dose would be higher, so you probably did hear it right. Your AN is bigger than mine. :)
I was wondering how long the "no symptoms" period might last, and was tempted to say something, so in a way I too am glad that the AN "spoke up" and reminded you of what it is capable of and why you are doing this.
I'm not much help on resources at Stanford, since I stayed with a friend in San Francisco the whole time, who served as my full time guide. Feel free to contact me if you like, though, as Daisy suggested, if you want a supporter during your CK experience. If you PM me, I can send you my cell number.
Steve
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Thanks so much to all who have offered their help. I was pretty wiped out for a few days, so I didn't log in to the Forum during that time.
DH Maizy, I really appreciate the long post you wrote. There's a lot of useful info in there. My wife and I decided early on to bite the bullet and rent a room at a nice Bed & Breakfast. She looked at the accommodations at Stanford and decided that, while nice and more affordable, I would get more sleep if we were in a smaller, quieter place. I always have a terrible time adapting to sleeping when I travel and stay anywhere that is not really quiet. (It's not uncommon for me to get only a few hours sleep per night when I'm away from home.) I'm sure the Decadron will be a huge help with my insomnia! ::) Anyway, she booked us into a B&B that sits on a 1-acre plot. She is my angel, always thinking of what will be best for me and my healing. I'm sure we'll put all your excellent info on Stanford resources (especially the cafeteria and off-campus restaurants) to good use! Thanks again!
Thanks, Steve, for your generous offer to share your cell phone # and be a support. I may take you up on that. The reason I've used an alias on this forum is that I am somewhat famous and feel I must carefully guard my identity to keep word from leaking out about my condition (it would destroy my career, for reasons I won't go into). I'm sure you would be very discreet, Steve, but for my own peace of mind, I've only told immediate family and a few of my very closest friends about my AN. That's one reason I appreciate everyone here on this forum so much. It's a place I can get (and give) support and important information, yet still stay anonymous. I'll have a wireless Internet connection at my B&B, so I will probably log on to our Forum from there.
Steve and Jan, you're both right-on about my "relapse" having a silver lining. Part of me was thinking, "what's the big rush in getting treated? I've been doing pretty okay for the past 4 years." One taste of the old symptoms reappearing and I was ready to get zapped ASAP! There is no doubt in my mind now that I am on the right track. Especially since I'm still feeling a bit fatigued and off-balance.
Something really wierd happened to me about an hour ago. I'm wondering it anyone else has experienced this: suddenly out of nowhere, my field of vision on my right side (my "good" side) was obstructed by a large, black shutter opening and closing rapidly three times. It almost looked like the wing of a huge blackbird flapping open and closed. It all happened in about 1 or 2 seconds and then ceased. Scared the s**t out of me!
I cannot wait to get CK at this point!
Best wishes to all,
Tumbleweed
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Tumbleweed,
I appreciate at the moment you want amenity and I hope once you have recovered that you do come forward about your AN. I feel there needs to be more discussion and information "out there". I never heard of it until two years ago. I have a facial neuroma which is even more rare than AN, but the treatment is very similar. My journey has been a learning experience for my GP also. I'm sure that many on this forum agree me.
I wish much success with your treatment.
Anne Marie
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Anne Marie -
I agree with you. While I totally understand Tumbleweed's need to remain anonymous, and I certainly respect his wishes, I hope there comes a time when he will feel comfortable in "revealing" himself to us.
ANs are such rare things and IMO the public needs to be educated about them. There are so many people who are initially misdiagnosed, or not diagnosed for years, that I think increased public awareness would be a great thing. I'm still a little disappointed, although I understand it, by Mark Ruffalo's reluctance to become somewhat of a "AN spokesperson". I'm not at all "bashing" Mark, I just wish he were more comfortable taking up "the cause" on behalf of all AN patients.
Jan
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Tumbleweed -
As you can see, we are a curious bunch here! So.... if we guess....will ya' tell us? ;D
Ah, darn it, I think we hi-jacked another thread.... here comes the ruler again!
Lori
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Tumbleweed,
I respect your decision. There are a lot of people that may or may not be famous on this forum and they keep their identity hidden. If it would damage your life as it is now, so be it. Of course it would be good to have some more awareness of this condition in the public (and I agree with the others abut that, exposure is good), but maybe it just won't be from you. My hope is that some day somebody will highlight the issue and become more active and outspoken about it. But, it's a personal choice, and not everybody feels willing to be a spoke person. It would be nice, but if not, it's your choice.
As for me, you're a fellow ANer, regardless of who or what you are. That's just fine with me. If one day you decide to take it further, you can count on my support, and other's too I'm sure.
anyway, all that is a bit beside the point right now. First of all, CK. Good luck with it, and do keep us informed on how you get on.
Ciao, Lorenzo
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The problem is that, within days of announcing my identity, my livelihood would be completely destroyed. It would be small comfort to me and my family that I raised awareness if, in return, I lost the ability to work in my lifelong career. The monetary loss and the loss of self-identity and self-worth would be a crushing blow. It's one that I face if my condition ultimately deteriorates, but I'm hanging on to what I've still got for as long as I can.
If at some point I'm unable to do my job properly, I'll certainly come out and reveal myself. But as a matter of self-preservation, I must remain anonymous for now. I've already lost so much due to this disease. Losing the career I love so deeply and my ability to earn a living in the only industry I've ever worked in my entire adult life... that would be the final, crushing blow.
Sincerely,
Tumbleweed
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Quite right, remain Tumbleweed. And hopefully it won't come to any doom predictions like that and you can continue as always.
Ciao, Lorenzo
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Thanks for your support, Lorenzo.
For now, my way of raising awareness must be limited to sharing my AN-related research with others on this board, which I've tried to do on a regular basis.
Best wishes,
Tumbleweed
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Tumbleweed -
understand completely. It's your life and you know what will and won't affect it. Going public with a physical disability is fine for some well-known people - like Rush Limbaugh for example - but maybe not so fine for others. You obviously know yourself and your life better than we do.
As Lorenzo said, you're one of us regardless of who you are and you have our full support.
Jan
PS - Duck, Lori ! :D
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Ah, yes, for all you know, I could be famous too. I am a legend in my own mind, afterall! ;)
Tumbleweed, as much as I'd love to know your "real" name, I'd prefer that you were healed and could carry on with your work. If that means we never find out your name, that's okay. It would be worth it. :D
But, you can't blame us for trying! We are rather bold after surviving brain surgery, you know! :D
Good luck to you!
Lori (maybe... or maybe not..)
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and who says that photo is really me? lol
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and who says that photo is really me? lol
I have to say Lorenzo, I was wondering that very same thing after your post about people keeping "their identity hidden".
BTW, as long as we're confessing things - I'm really Christie Brinkley, and Lori's Cindy Crawford - without the mole ;)
Jan (being bold after brain surgery)
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Who?
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Lorenzo ::) Here we go again! :D
I just get done explaining who Lucille Ball is to you on the "wine & whine" thread, and now I have to explain super models ???
You're kidding me, right?
Jan
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Unfortunately, I think I look more like Lucille Ball than Cindy Crawford... :'(
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ah... you're getting to know me. yes, I was kidding. lol At least I was about Cindy Crawford. :D
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so out of this thread I didn't get much info I needed.... can we go back to the original topic?
Thanks
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Sorry, Sher, and good point - we did kind of hijack your thread :-[
If you go back to page 1 though, there are some very good responses.
I think the bottomline is that while there are some very common symptoms, everyone is different.
Jan
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Apologies.
I agree, there are some posts on this that refer to your question. I think though that when one asks a doctor as I did if some of my symptoms are related to the brainstem being pushed, they either don't know, or can't be sure. I have high blood pressure, but is that 'normal' or brainstem related? I choke a lot when eating certain things, is that brainstem related or not? I sleep badly and much less than I used to, what's that from? I have no answers to any of these, nor do my docs it seems. That of course does not mean that these are NOT brainstem pushing related. I must add that my brainstem is only slightly pushed, so it does not affect anything, I was told. Does it not? I wonder.
My mother died of a neurological problem, Multiple Systems Atrophy, which was explained to us as a degeneration of her brainstem. She ended up speechless, paralysed, unable to swallow, high blood pressure and high heart rate. Heart was the second last system to give up, and killed her. Breathing would have been next, fortunately she was spared asphyxiation.
I did have a friend with an inoperable 6cm AN that eventually ended up paralyzed and unable to speak and swallow and eventually breathe. She died in '04.
BUT, these are extreme cases! I just use them as an indication of the things that went wrong with their brainstem problem.
I think you need to ask the question to your doctors and see what they say.
Ciao, Lorenzo
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Lorenzo,
How big was you AN pre-treatment and what is the size now?
Thanks,
Sherry
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Sherry,
Diagnosis: 24mm
Pre-treatment: 26mm
1 year: approx 30mm
3 year mark: 22mm
Last MRI was in November at the 3 year mark.
Ciao, Lorenzo
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Lorenzo,
What is that in cm's?
Sherry
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Sherry,
That's 2.4, 2.6, 3.0 and 2.2cms
Ciao Lorenzo
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What size is your tumor? If it is affecting your brain stem, I wouldn't wait around. My AN pushed my brain stem over to the other side of my head. The tumor was 4cm. The brain stem controls a wide variety of things in your body. (like the respiratory system). I guess because of the size of my tumor and the pushing on the brain stem, there were complications during my surgery, and I had to have a traecheotomy. Not being able to talk for 14 days sucks. So I would get it checked out.
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Hi Sher,
Here are some of the problems my daughter, Chelsea, was having before she was diagnosed. Her brain stem was displaced by a large 6cm AN.
For about 7 years she had severe stomach problems which at first was thought to be lactose intolerance then IBS. Then there were the terrible headaches she had for years-thought to be from stress. She was an outstanding soccer player but as she grew she would look a little clumsy on the field that we just though was due to growth spurts. A few months before the tumor was discovered she had some dizzy spells and blurring of her vision that lasted only seconds. Her hearing was perfect and balance for the most part was okay. When the doc's reviewed the MRI with us they just sat there and stared at it. They couldn't believe not only the size but the displacement of the brain stem. She had also developed hydrocephalus. Now, 2 years later (post surgeries and radiation) she is doing great. She still has headaches at times, SSD, stomach problems once in awhile but no balance issues or facial paralysis. I hope some of this information helps you. Due to her tumor size and location she had a lot of post surgery complications that might not have happened if the tumor had been discovered when it was a smaller, but who really knows?
Michelle
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6 cm and no facial problems!
That is impressive. WOW! Who did her surgery? Was it a translab?
Daisy Head Maizy
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Thank you everyone for your responses. I am just vascilating over when to do CK. I am going to see if my ENT will order another MRI for me the end of August so that I can better make my decision. Symptoms are up and down, my AN was getting close to the brainstem and am wondering if I am having more rapid growth because of different symptoms or is it all in my head. LOL. I am so thankful that I found this forum. I don't post too much but am reading and appreciating all the people here!!!!! ;D
sher