Hi all, some of you may know me from other boards like asap, sm-acm, braintalk etc etc, I am amazed I haven't found this board before! I'll write my story later or you can read it in the stories section of sm-acm under kirstin. Right now life isn't much fun my decompression was at the end of jan this year and I am still in constant pain even on stuff like endep and neurontin. I'm only 18 and feel liek an old woman as alot of you will be able to sympathise with. The neuro and surgeon are in debate right now about wether a shutn woudl be a viable option because the symptoms are still quite big and bothersome. I will write mroe later because right now I have to go get ready for a uni quiz I haven't studied much for. Just thought I would make introductions now on the boards for people who haven't met me yet.
new to board - not new to CM, SM
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 kirafaye |
new to board - not new to CM, SM |
Lead | |
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Posts: 262 (05/23/05 22:36:50) |
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mskane |
Welcome | ||
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Posts: 390 (05/24/05 04:40:00) Moderator |
Welcome and good luck on that quiz. Well wait to hear more.
Best Wishes Mark |
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Penny S |
Re: Welcome | ||
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Posts: 1216 (05/24/05 10:19:53) |
Hello Kira,
As Mark says....Welcome to COH. Why don't we wait until we get your bio before we start asking questions? You know how many answers are already included...and we can then move on to other areas. Just post again when you have the time. Yours, Penny |
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kirafaye |
Re: Welcome | ||
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Posts: 262 (05/25/05 04:54:51) |
Cuttign and pasting story to give my poor arm a break. But yeah quiz went well and I got a reprieve from one of the professors over a late assigment cause of my condition (there are good people in the world). Right now I am waiting to go back to the surgeon to disscuss what other measure we can do abotu the crippling pain and numbness that the liver damaging candy pills (painkillers- I call them that cause thats about all they do). The decompression did make the syrinxs move abit but I am in worse pain and numbness now so me thinks there is a problem needing adressing, but yeah story time.....soem of it my soudsn funny cause I have already introduced myself and this is a cut and paste as I said above.
Well my story after 6 yrs of huge problems and 2yrs of extreme pain and potential MS etc etc as u all know. Got my diagnosis which is is severe ACM1 goign to the posterior C2 arch (something apprently long, I dont have the letter for the exact wording) and extensive syrinxs going form C2-T10 (impressive yea!) I had decompression on the 28th of jan 2005 and its pretty much done nothing except give me a stupid hair cut. My symptoms are extremem pain and munbnees down my right side, visual and neurological disturbances, headaches....alot is put into the visual and nuerological disturbance catagory......I have problems moving my right side, my short term ememory is shot, and I am starting to have mini seizures....fun yeah....well thats all I can think of right now.....ohhh in my surgeyr they removed the skull and C1 and C2........thats about it. Ciao for now |
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Penny S |
Re: Welcome | ||
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Posts: 1216 (05/26/05 07:31:22) |
Hello All,
Kira, if you're having mini-seizures, it certainly sounds like you would benefit from something like Neurontin, Topamax and some of the older ones. I'm sorry that your doctor doesn't seem more responsive. It must be very difficult to be in school, have to learn and deal with all of this. We have a young girl exactly like you here....Laura Kane. I believe that Laura will be graduating from college, so she may have some tips concerning studying during the pain. I do know the anti-seizure meds would take time to adjust to. Do you have a break coming up? You're still what I would consider a new surgical patient. I'm sure you've heard all of the usual, but do eat properly, take a regular multi-vitamin twice/day, have a banana each day (for potassium so that your blood pressure doesn't drop too much and you pass out), as much rest as possible, plenty of liquids, juices included. You can't expect your body to heal if you aren't supplying it with what it needs. Extra calcium would also be good. Do you have Pain Doctors in Australia? If so, ask for a referral to one. Is your right side worse now than it was before surgery? It's tough to come back after a difficult surgery....I know. Do you feel that surgery helped anything? I'm wishing you well, Kira,and I hope that Laura will jump in here with some help for you. Yours, Penny |
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kirafaye |
Re: Welcome | ||
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Posts: 262 (05/26/05 17:38:59) |
Yeah the pain is worse on my right side....actualkly I feel worse then before surgery.....before surgery I started hitting down hill really fast and now I am pretty much just as bad and feelign worse with the mini siezures and now I have started seeing things, the gremlins in my room, people smoking in odd places and when I look the obviosuly arent;s cause I am sitting in a doctors surgery....my entire room changed one night....by far it was fun.
When I was orgianlly waiting for surgeyr the neuro wante d a shunt and decompression where as the surgeon decided against the shunt. Now I am back to the neuro who I like because he is pretty frank about the situation and doesn;t make it obviosu that things aren't going well and telling me I'm putting it on etc etc.....he often has conversations with my surgeon after my appoitmentsand is now sending me back so they are obviosuly feeling somethign surgical needs to be done.....he has mentioned pain managment and as such but he's not a fan of them and neither am I. I have been dealign with this for years and have been studying, going to work, playing in orchestra harcore, moving out bf.....so there isn;t much they can;t teach my about not letting the pain get to me......unfortunatly the crippling pain is starting to get too bad....I mean I dislocate fingers and don't notice so u can imagine what my pain level 8 is......oh well I'll find out on tuesday. Right now I am waiting because a friends with SM who I'll send to this place as well to talk is finally going back to a neuro, we both think her shunt is blocked.....on edge to hear how she goes. |
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Eliza |
Re: Welcome | ||
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Posts: 304 (05/26/05 18:43:20) |
Kira, given the symptoms you've described, I think it's really important that you go over your medications with your doc carefully. Maybe even talk about weaning off of (and then, if no different, back on) them one at a time. Because, sometimes our meds can cause all sorts of "symptoms" themselves that are all too easy to attribute to being sick. For example, I was having seizure-like attacks in my sleep for the most of the first year I was sick and just assumed it was Yet Another Weird Symptom that had started up at some point. . . until my doc took me off of Nortriptyline to have me try Topamax. The shaking immediately stopped. It hadn't even occurred to me that it was connected, as the Nortriptyline had been one of the first meds I was on, right when new problems were popping up left and right. Likewise, I was amazed (and happy) to discover recently, when I went off of Topamax (again, because I was being put on something else; I was NOT happy about it, as I had THOUGHT the Topamax was going great) that suddenly I felt so much more "with it" and able to think better. I had titrated the Topamax so slowly in my effort to avoid side effects that I hadn't even realized that I was feeling much stupider ON it until I suddenly felt more like me again.
Between your mentioning the visual hallucinations (which I think are much more likely to be a drug side effect) and the "mini-seizures" (which, sorry, I don't remember if you mentioned if/how you were diagnosed with them: obviously, they COULD be typical seizure activity, but, especially if they weren't confirmed by neuro testing, could certainly be weird drug effects), I am wondering if one or several of your medications might be what's causing some of these problems. Although it would be a shame to have to stop something that might be helping SOME things, it would be great if it IS something that simple, so then you could stop having those problems. It might not be the answer, but it's definitely something to look into. A pain management doc won't necessarily teach you about "how to better cope with your pain": none of the ones I have seen have ever--luckily for them--tried to push me to do any of the more "alternative" things. In fact, while practically every other doc was saying, oh, you just need therapy, no PM doc I've seen (and there have been 4 or 5 of them, due to my moving, their moving, and/or their being sadists forcing me into cold turkey withdrawal) has ever thought I needed that. Where PM *may* be more helpful to you is by 1) having one doc to be aware of and managing all of your meds, 2) being more aware of recent or more novel treatment options (for example, the one I'd most recently seen had had success using Namenda--a drug approved for severe Alzheimer's!!--with many of his chronic pain patients and had me try that. Unfortunately, it didn't do anything but cause me problems, but it was exciting that he had a "new trick" that I hadn't heard of from any of my docs), 3) complementing your med. treatment with non-pill methods if appropriate (such as injections, although this is somewhat controversial among the ACM/SM peeps, or other things that maybe be among those about which you are skeptical but still could be helpful, like a TENS unit). They DON'T have to be all about "try to visualize your pain moving out through your fingertips" [/sotto voce]. One last thing. You mentioned that you now "dislocate fingers and don't notice." Have you been assessed for Ehlers-Danlos syndrome? Some recent--and still unpublished (supposedly this summer)--findings out of both TCI and the [U.S.] National Institute of Health suggest a fairly high correlation between Chiari and EDS. Many people with the hypermobility or classical types of EDS can dislocate various body parts quite easily. If this hasn't been considered by your doctors (which is quite likely, given its recent connection and still-unpubished status), you may want to look at one of the little screening guides online. Obviously, I don't want to jump to any conclusions from a throwaway comment you made, and you shouldn't go diagnosing yourself, but, if you find that you seem to meet the screening criteria, you might want to ask your doctors about it. |
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Penny S |
Re: Welcome | ||
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Posts: 1216 (05/27/05 07:06:46) |
Hello Everyone,
Kira, I'm glad that Eliza stepped in with her thoughts and more advice. One thing I noticed that you do daily.....playing in the orchestra. My problems were very similar to the ones you're up against. In my case...and in many others on this BB, using our arms too much can cause extended problems throughout the rest of our bodies. A spinal cord shunt can be extremely difficult. Depending upon how many muscle layers were cut through to insert it, an extended recovery is not unusual. You sound like a young lady who may be doing far too much...at least at this stage. Having been one myself, I know how we can close our ears, and just keep thinking fortitude will pull us on through. It can...for a short time, and then life can become very difficult. Eliza gave you excellent advice about your drugs. I would say they're probably responsible for some of the interesting things and people you've been seeing. I know the anti-convulsants are being used in England...so know the same must be true of Australia. Now this is another difficult aspect for us. Finding the meds that will help with the fewest side-effects. This is where a good pain management specialist can be worth his/her weight in gold. We're often on large numbers of meds. Why? Because the pain we experience comes from many different areas of the body. The worst, of course, being the deep burning nerve pain that can have us wanting to chew off a thumb just to take our minds off it. Muscle relaxants are sometimes necessary and, personally, I've found them to be difficult, yet there were times when I had to stay on them in order to get the pain under control. It's not very pleasant to come to terms with all of this. A lot of that "coming to terms" is thrown in our faces constantly because of the med situation. We're a very needy group...not because we're addicts, but because of pain. I know that it's ultra-difficult to be in school and having this disease on top of things. Your job may be something else that you'll seriously have to consider. It's very hard to tell someone else what you see as the problem areas in their life. Still, as someone with the diseases, for a very long time I may add, someone who has been through surgeries and then decided to "go it alone"....I have found that no matter what choices we think we have made, there is always something lacking. You should certainly keep moving and going, but I think you're doing too much of each. I know that you're going to be more inclined to listen to someone closer to your own age, I understand that. However, as someone way on the other side of that age, I can see the dangers you're forcing on your body. One caveat here: DO NOT suddenly stop taking any of your meds. Sooner or later that pain is going to show you who the master of your body is. When it reaches that point you'll happily turn to the meds that may be of the best long-term value. Personally, I could wish for nothing more than seeing our young people go through ordinary lives, complaining about ordinary things and never knowing that things of this nature can be in their futures. Still, we haven't reached that point yet. Bear in mind that any surgeries increase the amount of scar tissue in the cord...and that can cause problems of it own over time. Surgery can only do so much....and sometimes it adds additional problems. I hope your friend will receive good news. How did you find each other? Is there a group in Australia? Yours, Penny |
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kirafaye |
Re: Welcome | ||
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Posts: 262 (05/27/05 21:46:21) |
She is going in for tests, we found each other over the net on another board...there isn't much in australia support wise beyond a yahoo board. She only has sm though and wouldn;t have foudn that board....just luck, she is onyl a year older then me.
With the drugs I am same on and off the stupid things....esxcept now I am getting a gag reflex from takign so many. We have been trying for 7 yrs and nothign has ever really ever worked and my nuero wants to try surgical options again and is sending me back after talkign to my surgeon. I feel so old....if I have the surgyer I have to move back home for a time give up work and uni for awhile at the very least! I guess I'll knwo more on tuesday. Eliza I had a nice long post last night that as soon as I pressed send said I didn;t ave the right fields and lost everything. I'll try and write a longer post soon but I am off work cause my arm is bad so this is abotu all I can manage atm, but thatnk you both for writing such long informative posts, they do help alot. |
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Eliza |
Re: Welcome | ||
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Posts: 304 (05/28/05 12:59:15) |
No worries, Kira.
Losing posts sucks. If you compose them in a text program first and then just cut and paste them in, you'll still have the original if the board or your web browser goes evil on you. It's still not a hundred percent, but, if you're writing something longer, it's a good way to hedge your bets. I hope your arm is feeling better. |
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Penny S |
Re: Welcome | ||
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Posts: 1216 (05/29/05 08:58:41) |
Hello All,
Kira, I'm also hoping that your arm pain is better. That's one of the things that totally knocked me out in the beginning. The pain would just grind away. I couldn't wear wedding rings on the finger of the affected side...even to this day it can make things tough. One thought that may help with the pain: I found that wearing a bra really set things off...I know that it's easier said than done to not wear one, but at least you're a whole lot younger than I am. Wearing a camisole helps, with an open shirt or sweater of some sort over it. It's crazy to say, but even seeing a bra today can bring tears to my eyes. Those tight fitting camis with built-in "shelves" can be worn...and that's because they're giving the same feeling from the top of my chest, under my arms down to my waist. If I absolutely have to, I'll wear one of them. I was a stylish dresser, but can't wear anything fitted over my shoulders...so a lot of things hit the Goodwill container. It sounds like you're having a lot of neuropathic pain....darn it!! Just try a lot of different things...many of us do this and it's nice to find something that works. Best wishes for your visit to the surgeon. Are your parents also going? (Extra ears....if not your parents, someone else who can follow what's being said.) Yours, Penny |
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kirafaye |
Re: Welcome | ||
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Posts: 262 (05/29/05 23:20:49) |
definatly easier said then done cause I have 12D boobs that need alot of support!
Definatly yes to neurpathic pain, mym mum has come to all but a couple of my appoitment that didn't really need her to be there really. My arm pain is gettign worse, I try to take off my full arm guard and wrist guard at night but its too painful. I am getting pain in my head, neck, ribcage...leg. My left leg is the only thing not in pain!!! |
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kirafaye |
Re: Welcome | ||
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Posts: 262 (06/02/05 23:29:47) |
I have been trying to post for ages.....
Well how my surgeosn appoitment went. Not very well at all. He refuses shunting for basically anyone, He is sending me for another MRI to make sure somethign isn't up. An opthamologist to check out my visual disturbances. He also is refuses ANY painkillers beyond panadol (asprin) because he thinks I'll overdose on them and is sending me to a psychiatrist. His onyl advice is this is life deal with it, you'll always be in constant agony try drinking some alcohol before bed to sleep. I can dislocate and break things without feeling pain so when I say my pain levels sit at a 4 you can only imagine what it is and when I was hitting 7's and 8's I was a mess. I can stand the tearing crushing searing agony in my arm, and the throbbing pain of my knee being smashed and the hot spear in my head, the headaches, the visual and nuerological disturbances and hallucinations and the extreme fatigue. but for some strange reason want to try every option available before I resign to that as my fate. |
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Lisa Stringer |
Re: Welcome | ||
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Posts: 1137 (06/03/05 08:04:07) My Brain is too BIG! |
It is time to find a new dr. this one isn't working for you. Shunting and surgery aren't always the answer and can make problems worse so he may be doing you a favor there but he obviously isn't completely in tune with you. Living with pain every day sucks but many of us do it, the meds at least in my case help make it bearable, they keep it at a hum that is always there.
Have you tried a neurologist? He or she might be better equipped to help you deal with on going symptoms. |
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kirafaye |
my doctors are all running away | ||
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Posts: 262 (06/06/05 02:46:42) |
I do have a nuero but he is out of town for a monthish, I also just foudn out my regular GP is out of town too so I am goign to have to doa big re hash tommorrow cause I am apply for a chronic health package through our medical system, it helps with costs. And also checkign out the possibility of ehler danlos syndrom because I have classic symptoms and have hyper extensive joints, and witha 30% chance of having it might as well check it out. It can cause joint pain, so I may be on the wrogn drugs or need a mixture to treat the neuropathic and possible joint etc etc pain. I also have my MRI this thursday and psychiatrist this friday. on the 21st I have an opthamologist and then all back to the surgeon who I have gotten over my inital anger over. This is gettign expensive!
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Eliza |
Re: Welcome | ||
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Posts: 304 (06/07/05 16:29:53) |
That's just great. We wouldn't want you to get addicted to appropriately prescribed pain medication; you should just get DRUNK instead.
Gotta go with Lisa here: is it possible for you to see someone else? |
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kirafaye |
drunk is fun! | ||
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Posts: 262 (06/07/05 20:02:48) |
Yeah, everyone is out of town right now so I am abit stuffed.....pain comes and goes, me thinks because I have resigned o the fact I can deal with abit mroe plus there is some hope. Poepl have been mentioning ehlers danlos syndromeand how that can highly effect after surgery. I myself have spent years at the physio for hyper extensive joints and me dislocating my finger is like a party trick, so its making sense. and right now I am in a better mood and able to tolerate stuff mroe cause there is a possibility for an answer vs nothing.
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kirafaye |
GAH! | ||
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Posts: 262 (06/09/05 02:18:23) |
I HATE EVERYONE IN MEDICINE!
Okies I went for my MRI today and specifically stayed to get the results because 1. I have an opthamologist appoitment and need all my MRI's and 2. last time I saw the surgeon and it was delivered to him the diagnostic evaluation sheet that comes with it mysteriously dissapeared before we got a chance to read it. So anyway I'll record my results as written and add my own comments in brackets! I have had 4 MRI's one before surgery, one right after surgery and two couple of months after. MRI BRAIN T1, T2 weighted sagittal T2 weighted, FLAIR weighted and DW axail Findings: An arnold chiari type 2 is noted (hey hang on my first MRI said I had type 1, though the last two except the missing one said I have type two so thats odd its changed) No abnormal areas of signal interferance are seen within the brain (this is the same as the first) The ventricles and subarachnoid spaces are normal appearances. The is no midline shift. No surface collection seen (by what I gather no hydro or pseudo tumour cerebri so thats good). MRI SPINE T1 weighted sagittal from skull base to sacrum T2 weighted axial Findings: Comparision is made with the previous scan dated 11/4/05. The arnold chiari type 2 malformation is noted with a herniation of the cerebellar tonsils and vermis through the foream magnum (aaahhh so seeing its a comparision with the previous missing report I woudl assume it says I have type 2 as well!!!!). Herniation of the medulla into the upper cervical spinal canal is also noted. The large syrinx in the cervical spinal canal is also noted. The large syrinx extends throughtout the cord to the level just superior to the conus medullaris (around t10/t11, there is a little thing in the spine that they just namne that like a bend or something). It tapers in calibre in distal thoracic cord and there is only a small right sided syrinx in the distal thoracic cord superior to the conus. Thesyrinx is unchaged in size and apperance since the previous MRI scans performed on the 11/4/05 and the 4/11/04. (heyt hang on just a sec that first date was the MRI before hand that my surgeon looked at through the light in his window and said were thinning and the other date was my first orginal MRI so to my ignorant brain the radiologist who specialises in reading these things said that basically the surgery has not worked because my spinal is not flowing and is the same size. compared to the surgeon holding it up to the window for a min or two.!!!!!) The prosterior decompression of the foramen magnm and upper cervical spine is again noted. The haematoma noted at the operative site at the levels posteriorly in the previous scan has resolved (good news for once). No significant disc bulge or protrusion seen. The spinal canal is of normal cailbre. The conus medullaris is normally positioned at the t12/l1 level. NOW! so reading this and with my own knowledge this implies that the surgery has NOT helped the syrinxs have nto moved....and its no wonder I'm still sick!!!!!! I hate my surgeon he is sending me to a psyciatrist to deal with the pain when for obviosu reasons reasonbs the pain is in the syrinx!!! Oh if this woulkd censor me I woudl have put such swear words in here! NOT HAPPY JAN! |
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Penny S |
Re: drunk is fun! | ||
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Posts: 1216 (06/09/05 09:44:22) |
Hello Kira,
I noticed one glaring thing that I had overlooked when reading your earlier posts. You only had surgery a few short months ago. (Jan./05) You sound as if you're doing far too much at the moment...and should remember that you have a serious problem. Surgery doesn't necessarily fix anything...it can help, but it seldom makes things perfect again. Pain is one of the biggest side-effects we live with. Did you have the latest MRI's at the same place where the earlier ones were performed? I'm sure that you know that open MRI's are of basically no use to us..and shouldn't be used. Pain Management Specialist, at least in this country, are generally well qualifed to help us with pain...they don't just put us in hypnotice trances or things of that nature. They're a relatively new class of practitioners (here they're M.D.'s, some are neurologists in addition to passing Pain Boards..these are the most qualified of all and have generally worked with patients before sitting their other Boards). This is your best chance of receiving adequate and well-documented help for your pain. It takes a long time for some of these drugs to work in the manner they should..and yes, they can affect our thinking, but it will often clear over time. It may not be what it was when we were 20, but we can concentrate, although I certainly couldn't do what Eliza is at the moment. By telling your doctor you wouldn't see a PMS, you almost tied his hands. He had no recourse but to send you to a psychiatrist. Now, in this case, the psychiatrist may be able to help, also...I simply don't know. You do need one of your primary caretakers to be responsible for all, if not most of your medications. Surgeons can't take on this responsibility simply because of the nature of what they do...they don't have time. Your best recourse at present may be to wait until the doctor who wanted to refer you to a PMS returns...and then get a referral from him/her. Please don't turn to alcohol to help with the pain...OK, at your age I'm sure that's a big part of life, so perhaps a beer or two. However don't compound one major problem with another one...your liver enzymes will be checked during ordinary bloodwork, and the meds you're given will perhaps depend upon on what is shown. I don't mean to sound abrupt, Kira...but I think this is the only way to get what you need. Out of interest, after having a cervical spinal cord shunt (a miserable affair...if you want pain, this one will knock you to the floor)...and then ACM surgery, it took about 14 years for my syrinxes to at least reach an acceptable level. What was the outcome? I had more pain than before..sometimes the body can adapt in the most remarkable of ways. I'm sorry that you're having to go through this...it does sound like some drug addiction was going on, and that can scare most surgeons. Licenses are taken away. Go to the PMS (Pain, etc.) Yours, Penny |
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kirafaye |
annoyed | ||
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Posts: 262 (06/09/05 17:20:00) |
The thing that truelly annoyes me is that 3 out of 4 doctors claim I have chiari 2 not 1! and also I don't mind the fact the syrinxs have not moved its more the fact that the surgeon took my last MRI report and kept it before we had a chance to look and claimed that they had moved and why am I still complaining kinda deal, when it has been noted that nothign has....its the lies and the implications that I'm making it up when the evidence is right there! I woudl have delt with the syrinx have not moved which is why your in pain next to they are moving so you shouldn't have that sort of pain so I am sending u to a psychiatrsit so you can deal with it better. Thats just wrong to me! and misinformation. Except for the first one all the other have been done at the same lab and probably by the same technician.
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kirafaye |
tired | ||
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Posts: 262 (06/09/05 17:25:57) |
I may be impatient but I'm not as stupid as the doctors think....I just don't want to be lied to blatantly like that. As for the alcohol I don't really drink that much and had to stop at my party after a couple because my surgery site was in intense pain. As for the drugs, speak to anyone that knows me and knows I try and avoid the liver damaging candies......I'm not stupid I am a science student and have done hours of research on this for almost 6months.....I just want the truth and not have it implied its all my fault....I don't want to get worse from negligence....yeah sure my syrinx is not worse but how long will it stay like that? I don't want to know I want to work with my doctors to lead a normal life and give myself the chance at least....is that too much to ask?
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