*Anyone have any updates they can share about their SM? Has anyone had it and it has never grown or gotten any worse? If I am diagnosed now at about 30, what can I expect around 40? Would love to get some feedback :)

I was 25 when i first experienced vertigo after a fairly long flight. Not sure if the pressure change or "activated" my syrinx or what but that was when i first had a symptom such as vertigo, headaches...had already had pain issues, but they got way worse then. Wasn't diagnosed until i was 29--must have had a really good MRI tech. =) Anyhoo, personally, my symptoms have steadily increased in frequency and everything. That is my story. Don't know anyone else with a syrinx so can't speak for anyone else.

I got kind of a funny story.. I've had so many stupid accidents but these two really stand out: I was taking my dog out to go potty and she's a pit bull and seen a squirrel and dragged me down the hill. I smacked into the ground face first - Ouch! Then sometime later, a big dang door fell smack down on top of my head and felt like it should have knocked me out cold - but didn't. I do not know how I was still standing really. That's when I decided to go to the doc to get an xray or cat scan and later an mri... that is what caught the syrinx. Does the thought of losing functions eventually later in life - ijf it starts to elongate and destroy the spinal cord ever cross your mind? I think about it... but I don't know if that happens to everyone who is affected by this. It definately hurts people in different ways though. ASAP.org you can talk to different people on the list-serv

Hi, I am a novice to such forums (apologies in advance) however could very much use the support it can offer. With such a rare diagnosis, one feels slightly alone in the dark, so why not play Marco Polo right?:) I have been diagnosed with idiopathic (unknown cause) syringomyelia for only two weeks, the results of my second and third MRI for a causative agent (trauma has been ruled out by the brain MRI) has not been released yet so I am unaware if I have Chiari malformation or a tumorous cause. The first MRI showed a cervical syrinx and I was given the syringomyelia diagnosis casually by the neurologist. I am frantically researching the disease and am finding conflicting data. The "NO" list is growing from what I find on a daily basis; no running, jogging, biking, jumping, diving, planes, straining, lifting, weight-training, coughing and yes these limitations are forever, great Smurf what else right? And the outcomes vary dramatically, one site states their study revealed 20% of clinically stable patients died at an average age of 47 years, what? Although another states no intervention is necessary until symptoms are present, hmm. I have more symptoms than are listed for SM and not all that are listed under it, is anyone else having these issues? Thank you.:)

Yes I have all your symptoms and possible Chiari I go this Monday to a Neuro-scientist who has been doing his own research on theses two diseases. I am so frustrated myself I have been sent to specialist after specialist for the past two years. Been given mulitiple diagnosis and every symptom falls under sm and Chiari. I too am sick of feeling the way I feel. I was also diagnosed with Hoshimoto's and have read that it also goes with Chiari and Sm. I have memory problems, balance issues and chronic pain in my neck, shoulds and joints, I also get migraines and have vertigo. I recently saw a Neurologist and he had no clue as to what the lessions were, I also have a Tornwaldt's Cyst near my Adnoid region and he had never heard of it and had to look it up on the internet. I can only hope this Dr I see on Monday will have some answer I will keep you posted. It is so frustrating how the experts arent experts...

Thank you for responding,:) My symptoms actually fall more under MS than SM (that's what the neurologist was looking for when the the cervical syrinx was found), I have short-term memory impairment, significant fine and gross motor loss in my hands and arms as well as parasthesia and weakness, periodic trouble "finding words", extremely cold extremities, my symptoms get worse with extreme temperature changes (especially heat), vertigo, headaches, hand tremors, fatigue, etcetera. The syrinx on my MRI is hard to deny, yet I wonder if it is the only symptomatic causative agent at hand, and furthermore what is causing the syrinx in the first place, right? It gets extremely frustrating. I have a copy of the brain and cervical scans as I am seeking another neurologist and will hopefully get some concrete answers as to the cause of the syringomyelia and an explanation for all the other symptoms unexplained. I have never heard of this hypothyroid cause or the cyst, fascinating. I had a second branchial cleft cyst with a tract a few years ago and also have hypothyroidism, thankfully it is sub-clinical so not in need of synthroid at the moment.:) It makes one wonder who is researching the associations of such conditions that could very well lead to a greater understanding of the disease. I hope all goes well at your appointment and will look forward to hearing what you find out. Thank you.:)

well.. just thot i'd jump in here. it's been awhile since i have given this stuff any thot at all. i kind of gave up trying to figure out if i should worry about it after my neuro appt back in jan i think cuz no one would call back to give me results and my neuro left the practice. i do experience vertigo here and there.. pain is usually mild to moderate i think and ongoing. i don't know anymore. my brain does feel fried sometimes.. memory seems to be going quicker than it used to. feeling depressed now.

Greetings, it is nice to have yet another member to interact with.:) I agree this disease does seem overwhelming at times; the limited data sets and absence of specialization can get one down rather rapidly. There is a great piece of literature on the anatomical and physiological aspects of the disease that could put into focus some of the more blurred particulars that I found most helpful: http://www.asap.org/index.php/disorders/patient-handbook/ I have found thus far that those afflicted are their own best advocates for proper care and treatment. Education can build the confidence and knowledge base needed to become assertive and proactive patients, so let us all learn together.:)

Sorry its been so long since my last post....Well went to my Neuro and confirmed that I do have Chiari Malformation, Tethered Cord, Ehlers-Danlos, Thoracic outlet Syndrome and possible syrnx have to have ANOTHER MRI to look more closely and the cysts in my neck to see if it really is syrnx. A lot of info...was at the doctors office for 4 hours felt like a lab rat, but my Dr is actually doin his own research on the subject which was very comforting. I did find out that it is most likely genetic my mother has an extra Chromosome and a broken one she is a rare carrier of Down Syndrome which my only sibling who is older has... When I was born it was extremely rare that I did not have Downs...So its been very interesting...I go back on July 11th and am scheduling my surgery for the Tethered Cord hopefully this will give me some great relief and I will feel tons better...Keep up with your own research it has helped me greatly to educate myself I have a better understanding of the disease and its outcome....Good Luck and God Bless...

Wow, that is a substantial amount of information to have to take in, although it sounds like you are headed in the right direction. If I may ask, are you having the decompression for the chiari also? I have seen mostly positive literature on the success of the procedure and am in the waiting game to see if I am headed there myself, as I am listed as an idiopathic syringomyelia with a confirmed syrinx until the neurosurgeon consultation and hopefully a causative agent pinpointed. Is the genetic cause you mentioned for the chiari? I have heard mention of this possibility but have not seen any literature as to the carrier chromosome or if it has been found as recessive or dominant allele(s) etc. Has your specialist had any headway with his independent research? Thank you for sharing and in turn helping to educate others.:) I am an atheist so I say it as I hope all find themselves on the favorable end of the statistical data set, but the sentiment is the same.:)

Yes it sure was a lot to take in, but at the same time I was relieved to finally have some answers. My Dr. is doing his own research so at this point I cannot give you any significant info on the genetic end. Hopefully my situation might bring some answers to everyone who is looking. As for the Chiari he is going to start with the Tethered Cord surgery there has been some cases (very few) that fixing the TC has actually helped the Cerebullum tonsils move back up into the correct position, but with that being said he did say that would be more than likely a future surgery. I will keep you posted on any significant info. Thanks for all the support. Hope all is well...

Thank you for sharing and your support also. The contact with others afflicted seems to alleviate some of the alienation felt with the rarity of the disorder. I should have my answers in a few weeks so my psychological preparation for such has shifted to frantic data absorption.:) Best of the data set in your upcoming surgery.:)

Well, I have had two consultations with my neurosurgeon and more MRI's yet the causative agent for my syringomyelia is still a mystery. Chiari, trauma and tethered cord have all been ruled out, however there is no widening of my cord suggesting a tumor at this time. I am told by my neuro it is not unlikely to treat the syrinx and then find the tumor 3-4 years later, or it might be a cause still unknown to the field. I am headed in a few weeks for the dissection and/or syringo-subarachnoid shunt as the syrinx has begun to damage my control over my large muscle groups in my legs as well now. If anyone has any information on alternate causative agents I would be most appreciative.:) Thanks!

Well I sure hope that helps you...Just had my Tethered Cord surgery yesterday feeling very sore and having to use a walker. Keep up your research it sure does help in the understanding

I hope all went well with your surgery, and you are on your way to the fullest recovery possible.:)

Hi, I am new to these boards but not to the syrinx. I'm at the end of my rope with these doctors, so this is probably more to vent to others that probably have been thru similar situations. I was dx with cancer about 5 years ago. During one of the many tests, the syrinx was spotted. The doctors didn't know what it was and eventually I was sent to a neurologist, he said it's a syrinx, probably congenital and it's not causing issues. About 2 min. of his time and that was it. So..fine, I didn't give it much thought. Last year I was in a MVA where I had whiplash, at the time, my head filled with a fluid and I was not able to comprehend what was going on for at least 10 min. This is where all of the problems start for me. Since that time my neck (where the syrinx is) is getting more and more painful, weakness in my hands and legs, memory issues and now 'vertigo' although for me it's not really a 'spinning' feeling, it's hard to describe. I have been to 3 neurologists in the Portland area. None of them will give the syrinx any consideration and say it is not the cause of my symptoms. They've run B12 and thyroid tests, both fine. The latest is sending me to an ENT for a possible inner ear infection, ?, she looked at 1 of my scans and said she didn't have time to look at the others. I am completely frustrated and mentally exhausted dealing with the doctors. I was a very active person up until the MVA, now I can't do much of anything without paying the price for it. Sorry for the rant. I just don't know which way to go on this. I believe it's the syrinx, but the doctors will not even consider it.

So sorry to hear about all of that. I too had difficulty with dr's paying attention to my signs and symptoms all I can say is DO NOT GIVE UP! i went through my share of neurologist before I actually found one. keep looking and utilize the internet as much as possible. My neuro told me that I was more knowledgable about all my conditions than most dr's out there and that most dr's including the majority of neurologist are not educated on Chiari's, Syringomyelia, Tethered Cord. I suggest you also go to a Neuro-surgeon/Neuro Scientist thats where i had my luck....Best of luck to you and God Bless....

Reinelself, Thank you for your post! I should say that the doctors were neurosurgeons and the last was a neurologist. Neurosurgeons seem to not want anything to do with me unless they can cut into me. Which I guess is there thing, I am just looking for someone who can help. Thank you again for your thoughts and wishes! Gabrielle

Hi Gabrielle, your frustrations are well justified. If I may state, if you are referring to Portland Maine I would highly recommend Maine Medical Partners Neurosurgery and Spine. They are excellent.:) I have very similar symptoms including the "flu" like vertigo and all have been validated by my neurosurgeon. This is a frustrating disorder and not many professionals are equipped to treat such a rarity. I am going for a syringo-subarachnoid shunt insertion tomorrow so I will be off for awhile but I hope for you the best.

Hi Meggie, I am in Portland, OR but I do appreciate your post! I wish you best of luck with your surgery and please let me know how you do with that. Good thoughts for you! Gabrielle

Hi again Gabrielle.:) Well I am about 6 weeks post-op and am still having issues. My surgery unfortunately did not go as hoped. The original shunt would not span the thickness of my spinal cord so a T-tube syringo-subarachnoid shunt was used instead. I had a cerebral spinal fluid leak but thankfully it was sutural and caught before complete closure. As soon as I was asked to get up (about 3 hours after surgery) the muscle spasms started....it was unlike any pain I have ever experienced and put both my child birth experiences (including my first of 3 days of labor followed by an emergency c-section) to no more than a stubbed toe. I was on so much medication to try and control the spasms that when I would start to fall asleep I would jump myself awake gasping for air because I couldn't breath well enough on my own while sleeping(o2 saturation of 81) so I had 4liters of oxygen to keep my levels between 94 and 96. Then I developed a fever of 102 for two days and after bags and bags of antibiotics I developed thrush that peeled the taste buds off my tongue and extended down my throat. I could barely walk with the walker as my right leg had gone numb from the surgery and my 2-3 day stay turned into a week at the specialty hospital and another week at a rehabilitation center section of a smaller scale hospital so I could walk safely without a walker. Finally home I found out with some routine blood-work from my primary doctor for my hair was falling out and my skin was excessively dry that I developed anemia of an unknown origin so far and my ast levels (liver) are elevated for some reason so I am not allowed to take the Vicodin that was enabling me to get around for I am not allowed to have any medication that is metabolized in the liver....which is most of them. So my doctor put me on something called Tramadol which I heard someone else mention they were taking....it doesn't help much for me. So when I called and asked for something else the red flag went up for my doctor that something was wrong and he was right. After x-rays and consults I have been diagnosed with neuropathic pain (nerve pain) which is when the nerves of the spinal cord become so damaged that they send continuous pain signals to the brain without just cause. So I have an appointment with a pain management specialist to see what else I can do as I am only able to be upright for about 20 minutes before the pain gets so bad I have to go back to bed. The neck and shoulder pain is severe, similar to that of just coming out of surgery and then I have developed myalgia (muscle pain) that is as if I had worked out every muscle in my body to exhaustion and was feeling the effects the morning after. I went undiagnosed for 6 weeks as the pain killers masked the severity of the pain and I have a natural high tolerance which thankfully my doctor took into consideration and got me tested. So now I am starting a medication called amitriptyline for the nerve pain. I am starting on 20 mg and will work up the dosage slowly. It makes me very tired but if it might help some of the pain I am all for it.:) I keep trying to tell myself how lucky I am that I had the shunt insertion because I was loosing control of my legs and I now have a chance to keep walking.....however the sheer debilitation of having to stay in bed all day...everyday is horrible. I am unable to go to my daughter's plays at school or go for a walk with my husband, I can't ride in the car without extreme pain, I am left with a statue-like posture and a moderate gait impairment (limp), I can't clean my house or bend down because my joints are so swollen and stiff and I have all I can do to take a shower and put on a new set of pajamas everyday. My gross-motor and fine-motor is continually declining in my hands even with occupational therapy so I probably will not be able to continue with my nursing career and I get severe vertigo when reading, typing or moving too quickly so I have to take breaks from reading or writing every couple minutes to compensate, so online classes are out of the question right now. I was warned this was a possible complication but the 1/100,000 chance just baffles my mind. Not to mention we have not been able to diagnose and treat the cause of my syrinx so I have the potential of developing more of them. Thankfully mu husband has a flexible career to compensate for what I cannot do, but one's independence is so precious. Wow...how's that for a vent?:) I feel better though thank you, and if anyone has had the shunt insertion procedure I would love to hear about your experience. I think one of the hardest parts of this disorder is the sheer isolation....the only people I know who share my disorder are you in this forum, and I did have a nurse in the hospital who's husband had it before passing from unrelated cardiac complications. Please note that my experience is very rare and not at all common for the outcomes of shunting insertions, I would never want my story to discourage anyone from potentially beneficial surgery. I am a statistic as we all are so someone has to fall on the unfortunate side of the data set. Thank you for asking and if I might ask how are you doing? Thank you.:)

Oh Meggie....I am so sorry to hear this!!! It really does suck at how little they know about this. It breaks my heart that you are going thru all of this. I'm glad at least that this board lets you vent. Which you have every right too!!! It is incredible what we take for granted with our bodies. I know that. I never thought I would be questioning weather or not I would be able to walk or do simple things like gardening without the amount of pain. This is tough stuff that you are going thru. I've heard there are some local SM groups in a few states, maybe in yours? Although for right now, you just need to get your game plan together for the short term. Are you home yet? How are you doing today? At the very least, I am here to vent to, OK? Let us know what sort of plan they have and how you are feeling. As for myself, I'm doing OK. I had an MRI yesterday, not of the syrinx but of my lower back. My legs are going numb so they suggested it might be spinal stenosis? Because the syrinx can't possibly be causing any pain or issues, is the story they are sticking too. I was going to have cortisone shots, but I have since changed my mind. I started doing some yoga, but my neck started to hurt a lot after that so I guess I'll put that on hold. Send me an update on you! Lots of hugs and support!!!! Gabrielle

Hi Gabrielle. Thank you so much for your much appreciated support...I guess I did need a good vent huh.:) I have been home from the hospital for about five weeks now but not recovering well which is why my primary car provider suspected the nerve pain. I started a new med for the nerve pain, an anticonvulsant commonly used to treat epilepsy called neurontin which seems to be helping with some of the pain. I don't believe I will ever be pain free however some freedoms like walking or traveling short distances might become more obtainable as they slowly up my dosage. The plan was to treat the syrinx first by getting the shunt inserted so the damage could be halted (I was loosing control over the large muscle groups in my legs), and then to seek out the causative agent of the syrinx to avoid subsequent formations. Obliviously the complications have to be addressed simultaneously. As for your leg numbness...I have quadruple parasthesia (numbness and tingling in all four limbs), that was what led the doctors to test me for Multiple Sclerosis and by mistake find the syrinx in my cervical spine that was actually causing the symptoms. Your syrinx absolutely can cause numbness in your legs... the cerebral spinal fluid entrapped within your spinal cord puts pressure on the surrounding nerves and therefore causes symptoms related to the location within the spinal cord commonly called neuropathy (mine was C3 to C4) and can eventually lead to nerve necrosis (cell death). Cortisone cannot help the pressure from the syrinx if it is in fact the causative agent for your symptoms which I would assume highly likely. Cortisone is most commonly used as an anti-inflamitory and immunosuppressive, neither of which can aid a syrinx. A syrinx's damage is pressure related not from inflammation or immune response. And yoga puts a fluctuating amount of pressure on your cardiovascular system which is directly related to your cerebral spinal fluid pressure, I also asked my neurosurgeon about yoga and was told to avoid any positions that required straining or inversion (upside down positions). If I may ask, do you know where your syrinx is and it's dimensions? By location you might be able to pinpoint what symptoms could be associated with your syrinx. Don't take no for an answer from your current physicians...you are your best advocate for adequate medical care so adhere to your knowledge base. Quite often with such a rare disorder one must seek multiple opinions before a logical and educated conclusion may be reached. I fired my original neurologist who told me syringomyelia and syrinx were two words that meant the same thing....um no sir one is the disorder of having the latter.:) So don't give up on your search, good neuros are out there I finally found one. I am going to research a support group in my state that is an excellent idea thank you. And please know I am here also to vent to.:) This is a debilitating disorder and support is so essential. I appreciate finding this forum, one feels not so alone in the company of homogeneous individuals.:) Please let me know how you are doing as well..thank you Gabrielle:) Meggie

Hi Meggie, I'm sorry to hear that your recovery is not as well as expected. I really hate this syrinx thing. It's funny that you said that about the yoga and being upside down. I did that a couple weeks ago and am still paying for it. I won't do it again. I am now seeing an occupational therapist, but I see the neurologist again on the 23rd and I am going to push for a new MRI on my syrinx. I'm not sure where on the spine it is, its up in my neck. I have opted to not do the cortisone, for the reasons you mentioned. It's so frustrating to get any doctor to listen. Thanks for all your support and your experience. It makes me feel like I am not as crazy as they would like me to believe I am. :-) Let me know how you are doing. Gabrielle

Gabrielle, I don't know if you have read any of my earlier posts, but my spinal cord was injured in surgery giving birth to my daughter. I went to many doctors and through many tests and it was by mistake that I was diagnosed. After I was diagnosed the neurosurgeon tried to say I had no symptoms which was beyond shocking to me. Before I was diagnosed the doctors tried to tell me it was in my head or I was making myself sick and I can't tell you how crazy making this was for me! You know the truth. It may take some time, but you need to keep your spirits high and think about why they would say the syrinx is not the cause of your problems. I am sorry to sound like a conspiratorial type person, but my experience has convinced me that there is more going on then meets the eye with this type of injury. *Meggie* On conspiracy theory .....I am wondering if you have seen your MRI and related tests. You mentioned that you had a C-section and it was in the anesthesia part of the surgery that I was injured. I know this for a fact but have not discussed it with the doctors at all. It is like a cat and mouse game but, I need he medication and treatment and they need to prevent a law suit...so I am just wondering as I have over the last year, just how many women out there are ill and not being diagnosed due to the overwhelming effects this would have on the medical community and anesthesia options in general? If I had known that this could happen to me, I guarantee you I would not have had the C-sec. or I would have gone with option b. They make it sound like the odds of injury are minuscule, when in reality they could be quite the opposite if the true number of injured people were known. I would like to get the information out there,but I don't know how. I have not and will not give up though. If I can prevent one person from having this happen to them, then I will feel a deep sense of gratification! Debra

I'm glad you are pushing for the MRI Gabrielle, and just a tip...I always request copies of mine on CD so then if a question is ever raised or I need to switch physicians I always have them on hand (and I like to look at them with my own eyes also), I have never as of yet been charged for them either. If you look at my profile picture that is my actual MRI showing my syrinx as a shining white ball (from the contrast) in my spine between C3 and C4. Well as for me my diagnoses continue to grow, now they believe I have what's called myofascial pain syndrome in my trapezius (neck and shoulder muscle) along side the neuropathic pain. I am to start aquatic physical therapy to try and build some muscle mass as the majority are atrophying and my gate is worsening, and at the same time am going to try a TENS unit (electrodes that send an electrical signal to confuse the pain signal) for my neck to see if I can stay upright for any longer a period of time. We had an appointment with the neurosurgeon on Monday of last week and my syrinx has shrunk almost by 2/3 with the insertion of the shunt, however we also got the lecture of it can fail, clog, dislodge or get infected at anytime and that we were waiting for which causative agent cropped up first. The tumor is yet to be found...still. However a new type of Chiari is being more and more accepted in the neurological field called Chiari 0...basically it is diagnosed when no other cause can be found such as my case, the decompression surgery is performed and most patients resolve their syrinx with no other intervention so there is consideration of that route for me also when my neurosurgeon properly researches it. And so we wait. Please let me know how it goes and thank you for all your support.:) *Debra* I did have two cesarean sections but my syrinx is between C3 and C4 which would make that particular scenario impossible in my case. I think your passion for helping others is a just and beneficial cause. You are intelligent and driven and although this might intimidate your physicians...I think you are on the right track. You might look into government agencies to report your malpractice to, they have the pull to make your quest a reality in many cases. And for both of you I think one of the diagnostic symptoms of this horrible disorder should be feeling like your crazy.:) It is so rare and unknown that the road to get to proper diagnoses is paved with disbelief and self-doubt, at-least here we are not alone.:) Please let me know how you are doing as well Debra...I hope for you the best.:) Meggie

Thank you Meggie. I wonder if you can give me any suggestions as to what G agencies I could or should contact. I am at a total loss with this and somewhat going in circles. Also, I wanted to know if there is anyone else out there who is having "thinking" problems. My short term memory and even some long term is , well my brain literally hurts to try and think. This is different from the headaches that I get. This is more like my brain feels swollen and in a vice grip when I try to think about a difficult problem. I have days where I can't remember how to spell or basic math. It is very strange and scary! Can anyone relate to this problem at all? Debra

Hi Debra.:) Well I don't have much of a knowledge base in law;) but after doing a little digging I found a potential starting point for you which would be your state's medical board. This is usually accessible online (your state.gov) and under forms and publications should have an option for medical malpractice reporting, however I would highly recommend seeking legal advice before doing so to retain your rights. There is also a site with links to these boards alphabetically by state (http://www.ama-assn.org/ama/pub/education-careers/becoming-physician/medical-licensure/state-medical-boards.page) I hope that helps.:) As far as the short-term memory I can absolutely relate even before the neurontin. The processing aspect is also an issue for me now but medication based, however I did have episodes before the shunt insertion that left me unable to absorb information well that came with the waves of pain and pressure in my upper neck and head...is that similar to what you are experiencing?

When I have something difficult to think about or problem solve my head hurts intensely, like it could pop,which I guess means I feel a lot of pressure and pain. The pain in my neck and shoulders never subsides, it just either lessens in intensity or increases and the only thing that helps is pain killers and muscle relaxers. In fact the muscle relaxers really help for a day or two. The other thing is I feel like I have Alzheimers most of the time. I can't remember simple things and now wright every thing down, but sometimes I lose my notes. I use to run my home and two very busy businesses. Now I can barely, just barely take care of myself and my twelve year old daughter. It is all very scary that this happened in the mists of a very bad divorce. Thank you for some direction Meggie and as far as legal...attorneies do not want to touch a case that is twelve years old. I would have to hire someone and it require doctors to testify against each other and other complications. The only thing I am concerned with is losing my insurance, which my ex husband is tying to make happen. This is the scariest of all!

My pain came and went but was not caused by trauma so that might be a contributing factor. The memory issues can be extremely frightening and can be exasperated by stressful circumstances such as divorce. I can relate 100% on the Alzheimer's phenomenon, being on the neurontin I have all I can do to remember if I turned on the dryer or will find a wet load the next day...really. I am a multiple list maker also and would surely perish without them.:) Yes...all states have an individualized "statute of limitations" which is a time limit to file claim before the plaintiff is considered no longer liable. I have suffered issues with this also and hold strong opinions on the subject matter.:[ I could not imagine losing insurance with these medical issues, I know my shunt insertion operation alone was in the $100K's and will not be my last, not to mention the two week hospital stay and near constant MRI's, consults and pain management. I do know there are programs that will help pay for surgeries and travel...maybe there is one that would help with scheduled appointments and medications? You must feel overwhelmed having to go through a divorce while being so ill...know you have support here if you need it.:) Meggie

Awe...Thank you Meggie! I believe everything happens for a reason and I am not sure why this has happened to me or the odd circumstances, it is like being on a wild roller coaster, I know that I am meant to help others somehow, but need to help myself first. I am fighting with the doctors and my ex husband and sometimes I get so tired!