lots of questions??? in ASAP Lounge Forum

RSS
Email

0 Points

lots of questions???

Author	Comment
msvssyrinx	lots of questions???	Lead	[-]
Posts: 6 Mar 4 07 4:03 PM Reply Quote More My Recent Posts	Tags : None I'm wondering if anyone can relate or has any helpful info. For two years now I have been dealing with constant neck pain, pinched nerves in neck both sides, weakness in legs, was found to have small syrinx on mri at c6&7. Was given dx of Syringohydromyelia. Constant pain, fatigue, neck, shoulder pain and so on. I was told by neurologists and neuro surg that the syrinx was to small to be causing these symptoms. About 6 months ago developed severe shock like sensations associated with movement, sound, touch, changes in position. I have a few buldging discs but nothing impinges on the cord. I have severe ringing of the ears at night when i try to go to sleep. the shocks got so bad one time with dizziness and numbness in my face I was hospitalized for 4 days. Nothing has changed. Mri after Mri, ct scans, lumbar puncture, evoked potential test, sleep study, no explanation for these shocks that are actually called L'Hermitts sign and is one symptom of multiple sclerosis. Blood tests, still nothing. and they still say the syrinx is too small to be causing all these symptoms. They are ruling me out for Multiple sclerosis, but everything has been negative xcept the shocks/ L'hermitts sign. Now I am going to see this so called expert the best of the best of neurologists around. What is going on here? I am so frustrated, in so much constant pain, and these shocks are unbearable. Has anyone ever had these shocks? Oh and lately I have had severe headaches, and trouble swallowing and increased thigh heaviness and pain. Is this early signs of MS or is this the Syringohydromyelia? Please help with anything anyone may know or can suggest. Thank you. Desperately seeking a diagnosis.
	Remove this ad
mthatisme(d)	Re: lots of questions???	#1	[-]
Posts: 159 Mar 4 07 6:59 PM Reply Quote More My Recent Posts	msvssyrinx, Welcome. It would behoove you to see a SM/CM Specialist, a NS, who is better qualified to do a full evaluation of your symptoms, and a neuro exam. It is recommended to see if they can find a cause of your syrinx, and therefore also your other symptoms. You can go to this web page to see which SM/CM specialist is closer to you (from asap.org site) to start with: www.asap.org/organization...board.html Steps you can take, if you havent done so already: 1. Get a copy of your medical records and your MRIs. Study these yourself. 2. Self educate so you can be your own best advocate. 3. Research and search on any key words from your test results reports. Search on key words in combination with each other, various orders of words, and search for any MRI images, articles, that pertain to your syrinx location, medical terms in reports. Lots of google searches. 4. Web Sites for more information: American Syringomyelia Alliance Project www.asap.org/ Look under Resources, Information Videos, and Other Resources as good educational information. www.chiarione.org/ CM, (Chiari Malformation) is often a co-diagnosis for those with SM. You may find some of your symptoms in common with CM. What city, state do you live in? If you provide this, maybe someone can recommend a SM/CM Specialist for your area. Maria PS. It would help a lot of us on the board if you broke up your large paragraphs into smaller sub paragraphs. With our dysfunctions, it is too overwhelming to look at and comprehend sentences one right after another so close togehter.
cash71	Re: lots of questions???	#2	[-]
Posts: 304 Mar 4 07 7:09 PM Reply Quote More My Recent Posts	Welcome to the board. I'm so glad that you found us. Your symptoms sound so familiar because I experience a lot of the same ones. I too have a syrinx from C3 to T9. Trust me, you need to get to a Neurologist or Neurosurgeon with expertise in treating sm. It will make all the difference in how you are treated. Your symptoms are all common symptoms of sm and you are only going to get the help you need from an expert. Do your own research so you can be your own advocate and if you post where you are someone will point you toward an expert in your area. I wish you all the best, Caroline sm C3 to T9; reason not yet known Be kind, for everyone you meet is fighting a harder battle (Plato)
Shadowrider54	Re: lots of questions???	#3	[-]
Posts: 1910 Mar 4 07 8:29 PM Reply Quote More My Recent Posts	Hi and welcome. In addition to the great advice above, I'd like to add that when I read your sx, I wonder if you have CCI (craniocervical instability). I have experienced L'Hermittes and I know others here have. Each time, it was related to neck position. Dr. B told me that L' Hermittes is the equivalent of hitting your spines funny bone. If I had to have it often, it WOULD drive me nuts so I can understand your desperation. I know L'Hermittes is also a sign of MS. But it can also be a sign of something else going on at your skull base. I'm NO expert...but as I said, for me, It's related to position, so I avoid those positions if I can, tho often, the one position that might trigger it, won't trigger it the next time. One time I held my neck very still while sneezing. Don't do that! You can learn more about CCI at the TCI website, www.thechiariinstitute.com, and clicking on Videos and selecting the CCI video to watch. I have dial up and can't watch it at home, but I went to the library and watched it. As others have said here so well, see an expert!! You have something valid going on and you need someone to pay attention to it and get to the bottom of it. hth mac "If God brought me to it, then He will bring me through it." CCI (craniocervical instability) due to 4-place frx of C1 in 2004; TCS (Tethered Cord Syndrome)
msvssyrinx	Re: lots of questions???	#4	[-]
Posts: 6 Mar 5 07 6:00 AM Reply Quote More My Recent Posts	Thank you all, for responding so quickly and with so much advice. I am from Boston!! THe best of the best right? quess how many neuologists, and neurosurgeons I have been too... many. I was in Mass Gen Hosp, lots of my studies were all done there. they are the ones telling me that my syrinx is too small to be causing all of these symtoms. Recently I found another neuologist that took care of me when I was admitted to a local community hosp and he was great. He has sent me for so many tests, and has gotten me many referals to many specialists, but they all keep saying the same thing... they dont know whats causing the shocks. I am also on Lyrica which was recently increased to 3 times a day, and cymbalta 2x/day. Now my neuoligist is sending me to this guy out of St. Eliz hosp in Bos who is supposed to be the best of the best out here. and basically I have collected all my records and films, and 2 years ago, when I was given the dx of SM I did so much searching on the internet till I was sick of it. I am revisiting now because, I have pretty ruled out for most of the MS testing, so I thought maybe it's the syrinx. When I was first dx with SM I didn't have the shocks. But my shocks now are constant. They can happen with the blink of my eye, a loud noise, I don't even have to be moving, I will just get zapped. I don't know, I am just so discouraged. but thank you all, because you are all so caring and supportive with lots of info, and im glad I posted, and I am glad to see the these shocks have occured in sm because I thought it was only an MS thing. got to run the kids to school. Be back soon!! thank you all again, Kim.
Keesha in AZ	Re: lots of questions???	#5	[-]
Posts: 1799 Mar 5 07 6:57 AM Reply Quote More My Recent Posts	Unfortunately it's not uncommon for doctors, even neurologists and neurosurgeons, to be behind in research when it comes to SM and CM. There have been a LOT of discoveries made in the last several years, especially the last three or so, so it's typical for even so-called top-notch doctors and facilities to be behind in the times in SM/CM. There are only a handful of NL/NSG's that can handle our cases. If you truly want answers, get to one of the docs on the Medical Advisory Board (head to the ASAP home page--look at the logo above and follow the links). I've had L'Hermittes over the years. I was actually diagnosed with MS initially, incorrectly might I add. It took six months for them to change their minds and say it was CM after all. The experts will tell you that the old phrase is true--it is not the size that matters. There was a thread posted just the other day. Even Dr. Heiss from the world-known and respected NIH (National Institutes of Health), sharing the statement that small syrinxes still cause pain. Any NL/NSG that is brushing off a patient's small syrinx, it's time to get out of there. There's no use wasting time there. It's too important. While they may be of course be very good in certain fields of neurology, it doesn't mean CM/SM is one of them. Time to move on to proper care from the proper team. If you need any help finding someone or need help along the way, just let us know. Take good care. ~Never judge a man until you walk two moons in his moccasins.~
msvssyrinx	Re: lots of questions???	#6	[-]
Posts: 6 Mar 5 07 8:49 AM Reply Quote More My Recent Posts	When I go to this new neurologist who is supposed to be this top notch Dr. in Boston, and knows all about this strange stuff, I am going to push the dx I was initially given 2 years ago, sm. The only thing is, both a neurosurgeon at mass gen, and the neurological team at mass gen, when I was admitted there, all said that even if it is the syrinx, it is to small to do anything with it surgically. I was placed on Diamox to try and shrink and disolve the cyst, but had every side effect of the drug, and ended up hospitalized with severe dehydration, a rectocele, and urinary retention. I was in the hospital for 4 days. so they stopped the diamox. So, if it is the SM and not Multiple sclerosis, does this mean that I just have to live with these symptoms forever? this will never go away? I have 3 small children, 4,5,& 7. My husband travels alot, and I am very often alone. I strugle through my days, but I am strong and I do what I have to do. I have been so bad lately, crying in pain, I have never once let myself give up and lay down in pain. My time that I rest is once I put the kids to bed. I go all day long, suffering, and sometimes I get so impatient with my children, and I am yelling, and its getting harder and harder because of these shocks and neck pain. Lately I've been crying in pain at night once they go to bed, and it is so hard to drag myself out of bed in the morning. Every part of my body is hurting, especially, my head, neck, and the shocks with every move I make. I am so sorry to be venting so much, but does anyone have this much pain? I am so afraid that I have MS, but should I be relieved if it is being cause by the syrinx, or is that just as bad a prognosis as MS? I guess I am just trying to find out what is causing all this pain. Also, I fell a few months ago in my house and fx my ankle, than I tripped over my cast and dislocated the oppisite knee! I have falling/tripped and fell 2 times in my house since than, but luckily I didn't break or hurt anything. So, I will stop complaining now, and wait to hear if anyone can relate, I am sure you all can, but I am so discouraged. once again, thank you all for your support!
Shadowrider54	Re: lots of questions???	#7	[-]
Posts: 1910 Mar 5 07 8:58 AM Reply Quote More My Recent Posts	You are not complaining, you are venting and that is what this place is for, to share with other people who can relate, okay?? So put that thought out of your mind. This is the important deal for you! What you want to demand is that they find the reason for your SM. Some SM is from trauma, but about 80% of SM is caused by CM. That probably sounds awful, I guess it is, but at least something can be done for you and you can at least stop progression. None of this is fun...I don't have SM but I've read enough here to know that!! But you are strong and you can get through it. For yourself and for your family. Be sure to stress to whoever you see that you need to be referred to a true, FULL TIME specialist (full time in CM/SM) and the cause of the syrinx needs to be found!! Unless you've had a MVA or whiplash in your past....trauma like that. keep on posting! mac "If God brought me to it, then He will bring me through it." CCI (craniocervical instability) due to 4-place frx of C1 in 2004; TCS (Tethered Cord Syndrome)
	Remove this ad
cash71	Re: lots of questions???	#8	[-]
Posts: 304 Mar 5 07 9:04 AM Reply Quote More My Recent Posts	I am so sorry to hear about all of the struggles that you are going thru. You are obviously a very strong person to still be fighting to get the proper care that you need and deserve. You can go to all the expert ns you want but until you go to an expert in sm you won't find any answers or satisfaction. A syrinx is CAUSED by something. Although there are a few people that never find out what caused them most of us will have a cause determined and from there it will decide what can be done about it. Only an expert is really going to know how to go about finding the cause. There can be many things like tethered cord, craniocervical instability and various skull base abnormailites or scar tissue from trauma that are subtle and not something an average ns is going to know how to look for. Don't give up! Fight to get to see someone who can actually get to the bottom of why its there and then you will be able to move forward with how to treat it. I have small children myself, 4 and 7 and I can really relate to how you are feeling. It is so difficult to be patient and loving when you head is pounding you back is killing you and you hand is numb. ( My most recent symptoms is my left hand is numb) I have my first appointment with my ns in a few hours and I'm a little nervous but hopeful that I will be finding some answers for myself. Anytime you want to talk. I am here to listen and so are a lot of other wonderful people. You need to vent. It is important to get those feelings out and its even better when you can share with others that have similiar experiences. I wish you all the best, and anytime you need to talk, I'll be here. take care, Caroline sm C3 to T9; reason not yet known Be kind, for everyone you meet is fighting a harder battle (Plato)
Keesha in AZ	Re: lots of questions???	#9	[-]
Posts: 1799 Mar 5 07 9:04 AM Reply Quote More My Recent Posts	Diamox reduces your amount of CSF. It won't shrink or dissolve your syrinx. It's effective for many people with problems with high ICP (intracranial pressure), but again it's not going to dissolve a syrinx. I have high ICP and was put on it but had a severe reaction--which is how I found out I'm allergic to sulfa drugs. Did anyone discuss this possibility with you since you reacted? You do need to find a NSG who will try to track down the source of the SM. Around 80% are caused by a Chiari Malformation. The others can be caused by a trauma, etc., and unfortunately sometimes they are simply idiopathic (no known cause). But CM needs ruled out, because if that is identified it needs addressed. To deal with a syrinx, they try to deal with the root of the cause first. You also should seek out a pain management physician with experience in neurology or at least spinal cord injuries. As for the SM vs MS question, we stay away from questions like that because they are both terrible to have and everyone has different levels, so comparing anything isn't fair anyway. We are all in the same boat and must row with the oars we have. A PM doc can help find the right regimen to ease your symptoms--all of which you have described are typical of what we experience with SM/CM, I hate to say. I have a 4 and 5 year old myself and I feel for you. My husband, though in town, works crazy hours. Though my kids understand that I can't do things, it doesn't make me feel any better about it emotionally, and physically sometimes it's all I can do to sit upright in this recliner. Pardon me for asking but I can't help but be concerned at the three falls mentioned. If this is a common occurrence, please consider an assistive device if you aren't already using one. It's a hard step to take (no pun intended) but consider the long-term damage if you fall and suffer a serious injury because of refusing a device. If you have any questions feel free to ask. Sincerely, Keesha ~Never judge a man until you walk two moons in his moccasins.~
SarahInParadise	Re: lots of questions???	#10	[-]
Posts: 1918 Mar 5 07 10:39 AM Reply Quote More My Recent Posts	MSV I wanted to add to the excelent discussion above -- that in MY opinion -experience living in Boston area -- You would be best off to go down to The Chiari Instute on Long Island = NY for thier full consultation /workup process for several differant reasons . To sum it up in the short /sweet way -- they carry out a more extensive evaluation process than MOST Other neurosurgeons ( even more than most acm /sm specialist neurosurgeons ) that includes testing like a 3d ct scan , better immaging technology than most have access too - screening for several newer discovered conditions that can be entwined ( things like Ehlers Danlos syndrome or Marfan's ect - other connective tissue disorders that can cause / create bone structural problems during gestation then causing csf flow obstruction issues ) -- , moderate retrofelxed odontoid impacts , - a couple types of "teathered cord " problems that may be entwined in causing symtpoms -- gosh bottom line they access the FULL central nervous system in the process of determining just what has caused a given case of SM . For example -- in the last few years / the acm -sm specialist neurosurgeons have realised /discovered there CAN be a condition called acm 0 - where there is no signfigant tonsilar herniation - but there IS csf flow obstruction ( multiple factors or reasons this can happen ) that is causing the SM to form ... that a signfigant percentage of those with "milder " herniations - but SM actually have cord anchoring /teathering issues ( and when released = it can improve the obstruction issues above ) -- I could go on and on here - with the various sorts of conditons that CAN be entwined -- we have MULTIPLE differant reasons a syrinx can form --- and the physicians at TCI are MASTERS at finding those specific causes /and what will offer each person improvment ( they see the largest volume of acm /sm patients of ANY center or source of expert care in the US each year ) so their rate's of research /advancement are also at the forefront of what's being learned ect in the process . there are several resources we can discuss - help you with to make this sort of trech MORE feasible finacially if money is tight -- free small plane rides in private planes - the TCI hospital affilated medical hospitality house to stay at free ( most of the time space is available ) -- and the Wishes and Rainbows org . travel grant if needed ect ... plus tips /experience on how to plan = make the trip ect -and some help with insurance appeals if needed ect .... IF you'd like to consider this more -- do let us know what's needed on your end like travel assistance /insurance appeals info ect - many of us are glad to jump in and share the bits we've learned along the way . I WOULD Head there though ( NOT knocking the doctors in the Boston area AT ALL HERE -- ) just WELL aware after about 10 years with the acm /sm peer suport "world - community " that this is the BIGGEST most important factor to GET to true experts --and most often the big turning point in recieving accurate info - and care that WILL bring improvments ( not promised - they AIM to stablise us and ONLY promise that aim - but in reality we DO most often find improvments too ! ) I'm glad you've found us all = posted to introduce yourself ( and I bet if you post in the future in the " how do you live with it " section of the board - you'll find a LOT Of folks jumping in with thoughts - sugestions - guidance ect you do find of help too :-) Welcome and encouragment -- Sarah in Paradise CA ( acm /ehlers danlos syndrome - and multiple sclerosis ALL entwined with some other lower spine congenital issues in causing difficulties --but clearly BETTER off since finding true experts care - peer suport and guidance ect too ) . VP - Wishes and Rainbows board of dirrectors ( and glad to try and answer Q's about W and R too = at wishesandrainbows.org
SarahInParadise	opps /ack - board sections here	#11	[-]
Posts: 1918 Mar 5 07 10:44 AM Reply Quote More My Recent Posts	ACK - my memory sliped in the above bit about posting at another section of the board with more Q's ect . I MENT to write - post Q's at the "all about acm /sm section" -- ( see the drop down menu at the bottom of this page " - with questions ect to get more responses ... ( this section is ment for more "social " or non acm /sm related topics - posts / so not all read it frequently ) . Again a big welcome and encouragment - Sarah in Paradise
msvssyrinx	Re: opps /ack - board sections here	#12	[-]
Posts: 6 Mar 5 07 11:16 AM Reply Quote More My Recent Posts	Once again, thank you all here for your great knowledge, support, and information. Yes, I would be interested in going to that other post board, I will go there. And yes, to the other person(forgive me for not mentioning your name), I would be interested in going to NY if you could send me info about where that center is, I could check into it, I am close enough to drive there, so I would definatly go. My email is Littlepeanate@aol.com , Again, everyone here on this board is so caring and loving, even though you are strangers, we are all so close. You have helped me in a way no one else could. P.S. they have not found any cause for my syrinx, and yes, I have had every test known to man/md in this part of the world who are not experts. So I do need to go to a sm/cm place. Bless you all, you are all so kind. Kim
mthatisme(d)	Re: opps /ack - board sections here	#13	[-]
Posts: 159 Mar 5 07 11:53 AM Reply Quote More My Recent Posts	Kim, Here is The Chiari Institute's website for much info: www.northshorelij.com/ Use this one to go straight to TCI: www.northshorelij.com/body.cfm?ID=6407 Also, you can initiate contact with one of the names below via email, describe your medical condition, request the questionnaire to be seen for evaluation. TCI Staff: E-mail Contacts: NURSING Lisa Leonitis, NP- Responsible for patients; A-E (lleontis@nshs.edu) Ellen Quinn, NP - (Equinn@nshs.edu) 516-570-4439 - Responsible for patients: F-K Weon HiKang, FNP 516-570-4451 (WhiKang@nshs.edu) patients L-P June Taylor (ptaylor@nshs.edu) 516-570-4438- Responsible for patients: Q-Z Denise Petrizzi, NP (Dpetrizzi@nshs.edu) 516-570-4417 Pediatric Patients For other matters contact your medical secretary: Kim O'Neil (k0'neil@nshs.edu) 516-570-4423 A-E Melin Perez-Torres (Mtorres@nshs.edu) 516-570-4409 F-K Karen DiMarsico 516-570-4446 (kdimarsi@nshs.edu) Patients L-P Malalie Klaiber -516-570-4406 (Mklaiber@lij.edu) - Responsible for patients: Q-Z Inge Lucas Clinical Office Supervisor/OR Booking 516-570-4408 Kathy Murtagh RN, Surgical Coordinator 516-570-4436 For billing issues contact: Ed Randazzo 516-579-4428; erandazzo@nshs.edu Or Layne Greene, at 516-570-4401; hgreene@nshs.edu For additional assistance you can contact Richard Roberti, TCIs administrator rroberti@nshs.edu 516-570-4419 Maria
BABH	Re: opps /ack - board sections here	#14	[-]
Posts: 56 Mar 5 07 12:43 PM Reply Quote More My Recent Posts	Hi, It has been so long since I have posted here I forgot how! I was just wondering if you had an MRI of your whole spinal cord. I also have a syrinx, it was caused by a tumor that grew in my spinal cord... The tumor was removed and the syrinx is smaller... I was told that because the syrinx inlarged my spinal cord that it will never go totaly away the doctor said to think of my cord as a balloon and it has been inflated it will never go back to its normal size... I too was told that the pain I now have is not because of the syrinx... I know I had some nerve damage done from the tumor syrinx and the surgery... but at times I wonder if the syrinx does not also cause some of the pain...
	Remove this ad

<< Previous Topic Next Topic >>

Yuku free message boards

lots of questions???

lots of questions???