Result Are In For My Mri & Ct

[dizzygirl]

WOW~! Im am flabbergasted and in shock!for a few reasons!

I think ill start here.. Ive had my MRI and CT scans done here at home... and the radiologist who read them was not really "equiped or trained" to know what to look for.. so the results of my scans where fubarred in my opion...

thankfully i got some good referals from some of you on here for 2nd and 3rd opions!

Well I sent my huge stack of films out.. and got a call back immmediate on the same day the films where recieved. another wow..

Well the dr that i sent them to was so surprised that this stuff hasnt been addressed.

He told me that i have some very serious problems with my spine.. and tht was he can see even in the poor quality of the scans.. is that issues in my cervical spine alone are severe and as it stand now require surgery... not to metnion he said i have alot fo other things going with my spine.. but did not go into detail... only that he again cant believe that i ve gone this long with out help.

He also informed me that i do indeed have chiari going on... he believes.... that the problems in my spine and brain are playing a very BIG..BIG part in the severity of my dysautonomia... he is not saying that treatment what ever it ends up being is going to be a cure.. but that these issues are causing me to be where i am now.

SO I will be traveling to WI to be seen.. and to have some more (better quality ) scans done to get abetter look at things... and depending on how those scans looks and how other tests and things come out.. we will go from there

I must say that this feels surreal... its not that i want there to be serious things on .... but ive only been saying now (how long have i been on here) that there is something wrong other then pots... and i really feel in my heart of hearts that im on the right track or road for the RIGHT treatment maybe even to hope that ill have an improvement in quality of life.. god i cant even remember what its like to not feel as ive been feeling now for the past several yrs.

13+ yrs is too long to have to wait for answers... its inhuman and insane for this country i think..

heres to hanging on to hope kiddo's!

i pray that this leads to improving health for me. any improvement at all would be a blessing to me..

[lloppyllama]

Thats good to hear that you are now on the track to hopefully getting rid of some of your awful symptoms! Im so happy for you. I hope that its nothing too severe and that it is an easy fix, even if it means surgery, hopefully it would be one that isnt too invasive.

I hope your WI appointment goes well for you!! Good luck, and congrats, I will keep you in my prayers!

[Rachel]

Linda,

I'm so glad that you're getting some answers finally! I'm sorry you have to have these serious problems, but I'm glad that they are staring to be found and addressed. I hope that you find some wonderful doctors in WI and that your trip there leads to some helpful treatment. Let us know how it goes.

Take care,

Rachel

[yogini]

Great news! Good luck and let us know how it goes.

[Dawg Tired]

I am so glad you are getting some answers - I know how frustrating that can all be!

[juliegee]

Hi Linda,

Shocking after so many years! You seem to be proceeding slowly and cautiously...which is wise. Of those I've know with chiari issues, none has been "cured" after surgery. Some have even worsened. Make sure you are dealing with VERY experienced neurosurgeons, who regularly deal with chiari problems. Keep us posted on what you learn.

Julie

[flop]

Hi Linda,

I'm glad that you have had someone experienced look at your films and recognise that there is a problem going on. Hopefully the more detailed scans will give them some further information.

Others have previously posted about the pros and cons of neurosurgery. I would just make sure that you consult with a surgeon with a special interest in your type of problem and don't be afraid to ask lots of questions, even consult several surgeons - if you get more than one specialist agreeing, there is a higher chance that their opinion may be right.

Take care,

your journey has just begun!

[Jacquie802]

Linda, I am soo glad that you have finally had a doctor who is ready to help you. I hope things begin to look up for you, I know you've been having alot of problems now and in the past. Keep us updated, when do you go out to have the new x-rays done?

Good Luck!

Jacquie

[MightyMouse]

please know that surgery may not fix your problems such as dysautonomia... and it's not without risk... I know that first hand.

[dizzygirl]

Oh yes.. i know that surgery for chiari is not a "cure" for dysautonomia.. ive been doing alot of reading for months now.. on chiari...

and surgery is not something that i will venture into unless it comes down to the nitty gritty and all else has failed....i want to try all other treatments first.

Part of the reason why i choose this particular doc is b/c he is familiar with chiari.. and he has interest in the field.... and b/c ive been told by several people that he is conservative in performing sergery on folks w/o trying other options first... what i dont need is somebody telling me that surgery is MY only option....and have it be something that i totally regret doing...

BUT on the other hand im so glad to finally be getting some answers.. i was talking to my b/f this evening at dinner and i began to cry b/c its been a long haul...and i feel a glimmer of hope.. if nothing else to have answers and not be shrugged off as a nut case.. and im anything but a nut case...little goofy but no looney bird...ive been suffering for a long time... and i know that this is not going to take my pots away.. but like i said it is hope.. and some days hope is not something that i come by easily... and any glimmer is something to hold on to

I do plan on asking for references/referals for other opions.. just to be on the safe side...

My appointment is scheduled for october... they wanted me to come out in the next few wks. and be seen but living on ssdi.. that is so not possible!.. so i scheduled for october.. and if i can make it sooner.. then i just have to call...so oct is when ill get new MRI scans and stuff done

it does bother me tho that i ve gone some many stinkin yr. and nobody has said anything... reminds me of when i was about 13 or 14 they'd have those in school scoliosis exams.. well i ended up being sent to shriners childrens hospital.. and they tols me OH no you dont have scoliosis.. only to find out when i was 15 from a chiropractor that my mom took me to that oh yes you do have scoliosis!...... it does me ake me wonder how some ppl sleep at night..

is chiari like another pots thing? meaning that it is not easily recognized by doc's?

hugs

dizz

[MightyMouse]

No, Chiari is not quite like POTS that way--it's more like doctors definitions of what constitutes a significant chiari differs. Some docs believe that you need to have a huge herniation to warrant intervention, others believe that there can be zero or near zero herniation and you can still have chiari. You might want to check out the World Arnold Chiari Malformation Assoc website. http://www.pressenter.com/~wacma/

I've learned a bit more about both Chiari and also hydrocephalus lately b/c Teri's new job involves neurosurgery items, including a newly FDA approved shunt that is safe for use in an MRI...and also an item called a "shunt assistant", which allows the person with a shunt to avoid headaches from cerebral spinal fluid pressure changing quickly when they change position from lying down to standing and vice versa.

Anyway, please know that most of the people I know who've had chiari surgery have had multiple surgeries later from common complications, and often resulting in the need for a shunt (a shunt allows for the flow of cerebral spinal fluid out of the head when pressure gets too high).

I know more people who have had successful spinal surgeries to deal with disc and bone issues. Overall, my spinal fusion of c5-6 did help alleviate some pain, but b/c I have joint laxity, once that joint was fused, I ended up herniating discs above and below the fusion site. Also, you can look up my info in the archives of the forum, but my surgical course was very complicated--and in hindsight, frightening. I was too focused on getting better in the moment to acknowledge how close I came to either being completely or partially paralyzed or dead.

Good luck with your appointment and with whatever course of treatment you decide upon.

Nina

[Ernie]

Hi,

I am glad you are finally getting answer.

[DancingLight]

Linda,

Wow! No one ever looked at your poor spine before? Ugh!

Will you be travelling to see Dr. Heffez in Milwaukee???? I hope so.

I know it's not a cure, I know it's terribly risky, but if it is the answer? It must be dealt with by the best doctor possible. You seem to be proceeding with caution.

I too was examined for cervical stenosis and chiari based on my symptomatology...but show NO signs of either. So, now on to Lyme!

A far too long absent Emily

[corina]

linda,

i'm glad you're getting some answers, finally.

i sure hope they are able to treat you so that your quality of life will improve!!!

take care, and let us know how it goes!

corina

[kjdube]

Glad you are finally getting answers.

There are a few drs in the US that are true specialists in chiari malformation and its related conditions and complications. My advice would be not to rush to ANY doctor but to read and research first, then decide. This is my experience both personal and many years working with others newly diagnosed, as I have chiari and also raised 2 sons both with chiari.

http://health.groups.yahoo.com/group/chiari/

http://www.pressenter.com/~wacma/

Take care

[goldicedance]

Like Nina, I would be very careful about this type of surgery. This may sound cynical: When you go to a neurosurgeon, their job is to do surgery (read $$$$).

A few years ago, my husband had an MRI that showed herniated disc in his neck. He went to a respected neurosurgeon who said that yep he needed surgery immediately or he ran the risk of paralysis if he did something to injure his neck. He was scheduled for this surgery right after a vacation we had previously scheduled in Turkey. As luck would have it, he fell down a few steps--dislocated and fractured his shoulder. Quite a jolt to the neck!

When we returned from Turkey, I pressured him into seeing a spine specialist at a Washington university hospital. This specialist recommended against surgery. He said that there have been studies showing that if you took a random group of people and MRIed their neck and back, a number would also show bad discs and would be asymptomatic. This doctor told my husband that it was more risky to have the surgery given the possible surgery complications as well as the possibility that he might even feel worse after the surgery. Moreover, he said that the terrible fall in Turkey was certainly a terrible jolt. This spine surgeon belonged to a society of spine surgeons who pledge to stop needless spinal surgery.

I hope that this works out for you. But,please be very careful. I would get a few opinions about the Chiari surgery if the doctor recommends it.

Lois

[Tessa]

Oh, Linda - I did not see your post until today. I am so sorry that you had to wait so many years to get "something"... Although, what can I say other than that I am not surprised that many other docs did not notice your problem until now. It can happen. Not all, but some specialist do not really care and do not look thoroughly into a health issue.

I am glad that you found a way and - as mentioned by others - confirm all the possibilities and do not go for one until you are sure and have found the best one to help you.

I know it is easy to say and difficult to achieve, but I really hope you can get a way to solve your health issues as soon as possible and in the best way for you.

Take care,

Love,

Tessa

[JaneEyre9]

Hi Linda,

I'm so happy for you that you have found a doctor who has ideas about the causes and possible treatments for your long suffering. Emotionally, this must be a huge relief. Keep us updated as you move forward with your appointment and diagnosis. Thanks for sharing this uplifting news! It's not uplifting to have these terrible issues, but moving forward and feeling like you are making progress with a doctor is a really great feeling.

Kristen

[Maxine]

Dizz,

I'm glad you advocated for yourself, and found a conservitive surgeon who is not just interested in surgery as an only option. Knowing you for a few years now, I have always known you had, at the very least, some pretty serious spine problems.

I could always tell.........

You don't have EDS, and that is good in the fact that if surgery ends up being necessary, you can avoid the complications that often come with EDS.

I saw an orthopedic surgeon recently at Cincinnati Children's Hospital who is very familiar with EDS, and in fact he is also very familiar with POTS, and other forms of ANS dysfunction, so this was definately an added bonus. He explained that the heat is rough on me because of my POTS, and he explained why. He told me that my cervical/cranial instability has worsened, and compared the MRIs from 2004, to 2006, and said the pannus growth on the odontoid bone--(c1/c2)--cervical spine/neck has increased, meaning the instability is getting worse. That is the first time I had a full explanition of the instability. It felt good. It was explained by the chiari institute, but not to this extent. He said "pannus growth"---aka--(tissue growth) is part of what explains the instability.

I am scheduled to have another MRI of the cervical, thoracic, and lumbar spine on July 30th at 4:30pm.

UGGGGGGGGG, I can't tell you how many MRIs I've had. This all took a long time of advocating for myself, and ridicule from many different physicians dismissing my symptoms as either "no big deal", or histeria. There are two other neurosurgeons who are not dismissive, but again, their opinions were also dismissed----especially by local doctors.

So even when you have doctors in your corner------those docs can be considered as crazy also by "mainstream" physicians who are afriad to stray off course a little.

Dizz-------this doctor had guts! He is not bothered by numbers. The numers of physicians who say you don't have anything "serious" going on outweigh him, but yet he is taking the time to see you, and atleast discuss the seriousness of your spine issues, and possibly offer some relief of some of your symptoms.

I know your well educated on the risk/verses benefits of surgery, so I don't need to discuss that with you.

This orthopedic surgeon I saw also agrees that I have congenital cervical spine stenosis, and said my myelopathy is advancing. He agrees with the very surgeon your speaking of. His goal is to keep me out of danger, and therefore, he is doing his job by taking action. He said I will probably not be able to avoid surgery because my spine can't take much more pressure, but he would like to do more MRIs before any final decisions are made. He is also concerned about the brain stem area having this pressure on it from the instability. I like the surgeon you'll be seeing, as he did my cervical spine diskectomy/fusion---adding the titanium plate.

He did an excellant job, but unfortunatly we didn't know about the EDS yet. It was about 6 months after the surgery that I started having problems above and below the areas fused. The surgery corrected what is was supposed to----fix the herniated disks. He made a good decision to put the plate in, or the new disks may not have held up. Nina knows about that---- I like him a lot, and would like to stay with him. However, I'm not sure how much experience he has with EDS patients. I think he is learning more each day. My EDS doc sent me to the orthopedic surgeon.

Go with your gut, and get the help you deserve.

BIGS HUGS for a BRAVE girl.

Maxine :0)

[Ling]

I just want to cry when I read your mail. I will be thinking of you and have you in my pray's. I took 9 years before I started getting direction on my health. Good luck. Just remember dont trust every doctor you meet. With 13 years of bad health I am sure you know whats right and best for you.

Lots of love from

Ling and Britney.