Well I had an MRI several weeks ago and they've found a spinal cyst or something...

I'm T5 complete as the result of an rta 2 yearsd ago, and for a while I've had this numb patch on the back of my head...well it itches but scratching does nothing...I just presumed it was where I slept awkwardly. Also My left hand has been numbish for a while and when I used the handbike in the gym it made my left hand burn.

I'm only 19, this stuff isn't supposed to happen to young people

Anyways anyone have a clue about this...I've nto even had a letter about it...how worried should I be?

I called my consultant after getting a referal to a neurosurgeon. And he was sayign stuff about it being above the level of my injury and at the bottom of the cervical spine I think...also not sure if this is what he said or not but I thought I heard him say about it puttign pressure on the cord from my level to the stem at the brain???

My necks been realy aching lately and I have headaches almost permanently...even my eyes feel funny at times...

Any clues?

What's likely to come of it?

My consultant asked if I was feeling weaker than normal...although I'm not really sure...it's hard to say...

Advice and comments much appreciated...I read up a little on it...My appointment isn't until the 5th december...I just want i tout the way really! Got college, uni, and life to think about!

Also I've been really sleepy lately as well...woudl that be caused by this?

Thanks Ryan.

Hi Ryan,

Geez, when it rains it pours huh? I hope that you get some definitive answers and this resolves soon!

I am no expert in any way shape or form, and I am not saying that this is definitely what is happening, but have you looked into syringomyelia?

Please see HERE for info.

also please see HERE ( about half way down page).

Also using the search facility, previous posts on this topic may be found too. Their experiences may be of help...


Like I said, it may not be a syrinx, but a benign cyst of something. Either way, best of luck

Hope this helps and whatever is causing this will be identified soon,

Take care,

K

Sorry that's soemthing I meant to add it's a syrinx...so a fluid filled cavity or soemthing.

Just read that second link and absolutely everything on there I'm experiencing as symptoms...not noticed my strength decling but it probably has...man I'm scared...

Hi again Ryan,

Ok,
Well, like I say I have no real experience with syrinx'x, even when I was nursing, but I have met people online who have had a syrinx and who have had surgery for it. They did lose a little function ( in that they stayed where they were when they noticed that they had the syrinx and this was a loss of function to how they were before). Hopefully others will be able to advise you on their experiences.

What has your Neurosurgeon suggested? Was this at your spinal unit/centre? If not how about getting them involved to see what their opinion is. What sort of time scale is the neurosur thinking of before he sees you again/does some sort of intervention, if any?

Let us know how you go on,

Take care

K


edited to say..how worried you should be all depends really..but personally I would want to get in touch with the neurosurgeon's secretary and demanding to know how worried you should be, the plans and so forth. He could be complacent, but you can't be...or it could be that it is all in hand and doesn't need to be treated right now..but you need to know and with what I do know, don't just leave it..know for certain.

I haven't actually seen the neurosurgeon yet, got an appointment for the 5th december.

Phoned my consultant and he couldn't tell me much more than he had as it's nto his area...

But he siad it's common after spinal cord injury.

Ryan,

are you in the UK? did you go to a spinal unit? If so how about getting in touch with them as that will be their area. If you didn't go to a spinal unit, as some sadly don;t, then how about whoever cared for you when you had your sci..
Waiting til Dec 5th is probably ok, but personally I would want to hear that from the neuro/spinal experts.

Another idea is ringing and asking to speak to a radiologist, as they will be the ones who looked at and flagged the syrinx on the MRI etc and double check any mris the drs do, xrays etc etc..When you get thru, and it may take a few attempts, then ask them for their advice,

hope this helps,

K

oh and I would ask for them to record all enquiries in your notes, that should speed them up a bit..sadly..

Yeah I'm in the uk. I was at sailisbury spinal unit and it was my consultant from there I spoke to.

All should be a lot clearer when I get the letter through from him with all the information on.

Thanks for the help and advice

Ryan.

Hi Ryan,

in that case I would say that you are probably in good hands and like you say, you will have more information when you get the letter. If for whatever reason you are waiting a long time to even get that, then I would ring to see if they can send another one out. I say this as of late I have had a couple of letters take forever presumably due the the postal strike ( I didn't get that letter at all), or he fact that my specialist sends his letters to India to be typed, hence delayed ( no joke)..

Best of luck with everything. Try to arm yourself with information, write a list of questions you wish /need to ask the neurosurgeon and take them with you when you go. Any good physician will not mind at all and will even welcome such a practice so that he/she answers all your queries and puts your mind at ease.

Let us know how ya go on..

Take care,

K

edit..typos

Will do

Thanks again for the help

Not sure if it's psychological or what but I feel like it's getting worse by the hour haha...my headache certainyl is...

Ryan,

I am sure that you pretty stressed about it all. I hope I haven't added to it. I am sure things are going to be fine. Worry in this sort of situation is totally understandable and normal. I know I would be stressed, so its only natural that any symptoms may feel heightened. It is probably because its the unknown in terms of you don't know what to expect etc. What I would personally suggest to/do, if my symptoms got steadily worse, and you can;t seem to tell if it is due to being anxious about it or it is the actual syrinx.. is make a call to the actual ward or the unit where you were and relay to them your symptoms. That way they may be able to put your mind at rest etc. Nowadays everything is computerised ( well the stuff done at hospitals) so they should be able to at least let you know if you should be seen sooner etc.

Of course, its so easy for me to say as I am not in your situation. I know that when stuff happens to me I tend to worry that I will be making a fuss/being an hypochondriac etc..a trait which has gotten me in trouble a fair few times..lol..not sure if its the nurse thing or just a general way of me coping..ie by playing it down..lol.

At very least each morning keep a log of how you are feeling, new symptoms etc..but then try and get on with stuff, on with doing what you usually do ( unless they have given you other instructions)..of course if there is a major difference then you must tell someone, but other than that, try to acknowledge it yes, but not let it panic you out of your mind.

Like I said, its easy for me to say..so at the end of the day, you have to do what your gut instinct is saying.

Just out of interest does anyone close to you know about this? If so, what do they advise, from a probably totally uninformed way..( not that we,..I'll rephrase that... well I am not informed..lol)

Take care and let us know how it goes,



K

My family knwo abit but not much...would rather not worry them to be honest...they have enough on their plates...

It'll be fine though

Thanks again! And I'll keep u up to date

Hi Ryan,

not wanting to worry them is understandable, I do the same with my husband and mother. However, I am also a mother and I would hate it if my kids did the same! I guess that I have double standards!

Yes, I am also pretty confident that you will be ok. Knowledge is power and you are researching and strengthening knowledge wise. Anxiety is expected, to be honest I would be concerned if you weren't a little worried.

I hope that you have a good weekend, and yes, please do let us know, either on the board or pm me. I will be wondering how things are going as I am nosey like that, lol.

Take care,

K

You're in my prayers Ryan.
I'll ask God to help with your fears & worry.
God Bless~

Good luck Ryan! I hope it works out great for you.

I've got Syringomyelia. I was seeing a Doctor 4 years ago about Scoliosis and he had me get an MRI just to make sure there wasn't a syrinx...but there was. However I've been very lucky with it since I have no symptoms at all. I get a yearly MRI to check the progress of my syrinx. It hasn't really changed much but it does worry me a lot since it stretches from the top of my injury to the base of my brain. Right now I'm just careful to watch for any signs that the syrinx might have changed and hope it's going to be OK. I think I've had this syrinx for many years before it was diagnosed so I might have had it for 10 or more years. Maybe I'll have it for the rest of my life without any problems, maybe it'll kill me tonight but either way I still live each day like normal since you can't constantly worry about maybes.

Hi Bill, I think yours is the same as mine then as he said the same thing to me...Still awaiting the letter of confirmation though...

Got the letter thropugh from my consultant at the spinal unit at last!

Here's what it says...

You Will recall that I reviewed this 18 year old gentleman in my clinic recently. As you are aware Mr Montgomery is T5 Complete ASIA classification A following an RTA in June 2005.

Mr Montgomery has been suffering recently from increasing neck pain and spasms. He also has been suffering from intermittent upper body spasms.

Examining his cervical spine showed tenderness on the lower part of the cervical spine and the upper thoracic area.
He also suffered from pins and needles on the left hand which proved to be ulnar palsy by nerve conduction studies.

I requested an MRI scan for his cervical and thoracic spine.
Unfortunatley , the scan showed soem extensive syrinx and septae expanding the cord fromt he level of fracture to the brainstem just above the foramen magnum.
I have referred Mr Montgomery to a Neurosurgical Consultant in Southampton for a second opinion.

Should I be scared?

Ryan,

I had a cyst and had undergone surgery to relieve it and had a close friend that had undergone 3 surgeries for the same (he was 1 of those guys that always fell into that 2% bracket of having complications with stuff). 1st off, did the dr. ever say anything about your cord being "tethered" at all?

Heres the deal. I was fortunate enough to go to the "goto" guy and a great SCI research-rehab hospital and they really informed me of all the how's, why's, what's, n whatnot. Basically, anyone who has an injury on their spinal cord is susceptible to getting a cyst and thats one reason they say you should get an MRI at least every 2 years.

What happens is spinal fluid that usually flows down the around the cord will sometimes make its way into the spinal cord itself forming these little pockets of fluid. If the cyst is progressing above your level of injury it can cause numbness and weakness in areas you used to feel and use good. If the cyst is progressing below, then usually the symptoms would be increased spasticity, weight loss, or sudden, usually weak, dysreflexia without any cause. Sometimes, just due to the nature of the injury, the fluid is able to penetrate the cord causing pockets but other times it's due to Spinal Cord Tethering. That's where scar tissue from the initial injury will grow out and attach to the derma (the layer that incases the spinal cord and fluid) and in that case doesn't allow the natural flow of the spinal fluid down the column and will then start to leak into the cord forming the cyst.

My case the cord was tethered and so they had to untether it (go in and remove the scar tissue) then place a shunt (little tube) in the cyst to allow it to drain. Depending on how big the cyst is, sometimes they just drain it back into the spinal column but if it's big enough sometimes they run the tube down to drain in your belly somewhere.

There aren't very many Dr's that specialize in these surgies so make sure you see someone who has done this at least a few times. They're going to be messing with area's that I'm sure you can imagine what one snip too much could do to you. Research and ask questions. I know you are in the UK but look here Craig Hospital and if you can look under contacts and find Dr. Scott Falci and Charlotte Starnes. I can't give them enough credit for what they have done for me and many others. They might be able to at least answer some questions for you.

Good luck and hope that insights you a bit.
Gus

Found this article that shows in detail a spinal cyst on an MRI and the exposed cord during surgery on a patient.

Spinal Cord Hemangioblastoma with Extensive Syringomyelia

Thanks for the info qustifer Very helpful!

I'm not sure whether it's been caused by tethering but that would be my guess I'll ask when I see the neuro surgeon in december

How long did your surgery take? And how long were you in hospital for etc.

Just in case they do need to operate I'm wanting to have an idea for things like college.

Thanks, Ryan.

Hi Ryan

Im not an expert on these but I have heard its relatively common in trauma cases. Well. not uncommon anyway. Secondly if you are not seeing someone till December you are probably not highly urgent. Its my experience that you will get seen pronto if its urgent. I saw my neurosurgeon last march for what I thought was routine, he took a look at my MRI and said ok we'll operate tomorrow!!!! And it was only a 'routine appt'. So anycase I hope this will at least put your mind at rest a bit.

cheers
lucydog

Hi Ryan,

Just to add my 2p on this. I live in Wiltshire so technically my SIU is Odstock/Salisbury & I have a residual cyst/sringomyelia at my injury site. But as I had a pacemaker fitted last year (really had a good year health wise:-) I can't have an MRI.

So they then said they would have to do a mylioxxxx (dye injected & x-rayed) & then a discussion with a neuro surgeon. As I have private care through work I went that route & saw a very nice/experienced man in Oxford. He said some folks have them for years or always with no problems but some folks have them & they grow even after a long time.

In my case as I have increased pain/function problems they wanted to investigate further so as the MRI isn't possible I had to have this old method which can't actually look inside the cord like an MRI but it can tell if the cord is swelling etc from my original MRI's. I've just had the results of that & they can't see any cord distortion but hypothetically it could be growing downwards without any cord distortion but they say unlikey.

The main point of all this was I was pretty nervous of any surgery/further losses but this guy does loads of these & he made it sound fairly routine & not 'major' though as mentioned previously there are risks & it's possible for sure to have some losses after surgery but I got the impression it wasn't as bad as I thought & not too lengthy.

In my case it's not worth the risk unless I get worse so I'm gonna monitor for 12 months & see but I don't think it's the end of the world if you get a good/experienced surgeon.

Thanks for the replies!

Sorry to hear about your health problems gaz! Hope your luck changes for the better soon!

Feeling a it better about stuff although I don't know whether I just worked hard, as I was playign for 2 hours, but I am knackered after tennis today and by then end I could barely push myself haha.

Shoudl I be wary of physical activity or anything? I know I'm probably better off asking my consultant but he's a pita to get hold of

Thanks, Ryan.

Yes that part I forgot to mention, "Urgancy." Sometimes, especially when the cyst is below level of injury, not always do they cause much trouble nor are in need of surgery. In my case I had a cyst progressing below my injury and another starting to progress above which was affecting the use in my hand and arm. Also I experienced a big weight loss, increased spasms, and the dysreflexia and the outlook was that it was only going to get worse so I had it done. For me, it was a 12 hr surgery (it's microsurgery and takes time...but you wouldn't think it was more than a second lol.) I really kind of pushed things and was out of bed in 5 days and out of the hospital in 2 weeks total but recovery at home took almost a year to get back to normal. They split the muscles that I use all the time so getting past the pain of cramps and weakness in the neck and shoulders was tough.

Like I said, do the research and ask many questions. Good luck! Let the battle go on!

HAd the appointment witht he neurosurgeon today!

Was quite scary!

He described my scan as quite amazing. The whole picture of the cord was this long black line all the way up to the brain stem with literally mm's of white eitherside (whats left of my cord he said). It was really distinct and really quite scary!

The good news is he did tests and my strenght and stuff is good.

Because no previosu mris have been done they don;t know if it's still developing or what...so for now they're not going to operate but I'm going to have another scan in 6months and regular check ups with him to keep an eye on it...

At one point he told me that if it was left and got any worse it could destroy the parts of the brain stem that control swallowing etc. and kill me...whic wasn;t nice lol! My eyes started to swell a bit I must say! Being told that at 19 is pretty intimidating...but also he said if I need the surgery now then he would do it tomorrow.

anyway for now it's being left as I'm not excperiencing any loss of function or anything and it's being kept an eye on and scanned agin in 6 months

Thanks, Ryan.

EDIT: Heres a pic about as close to mine as I can find...I woudl say mine was probably more obvious than that whihc is sayign soemthig :S http://www.uottawa.ca/academic/med/hendelm.../syrinx_mri.jpg

Hi Ryan,

I thought that I had dreamed this post as I was sure I saw it the other day, only for it to seemingly disappear!

Anyway, so sorry for the late reply to your update.

It must have been a bit of an ordeal to see the scans and hear about the extent of the syrinx. I am sure that its been a bit of a shock and frankly a bummer. Doesn't seem fair does it? However, I think that its important to focus on the good bits, or you will drive yourself mad if you are anything like me. The facts are that although you have this extensive Syrinx, you are going to be monitored. I take it that any new symptoms must be reported and I trust that if that was to happen (playing Devil's advocate here), you would be seen pronto.

Also, I know its easy for me to say all of this, seeing that it isn't me its affecting, but I think that I would find some sort of comfort so to speak in the fact that people like Gustifer who posted above have similar "prognoses" and have had them for quite a few years ( and hopefully will continue to).

Its also reassuring ( looking from a Medical/Nursing point of view that is) that you have good strength and probably upper body reflexes and then like. Hopefully in 6 months you will be telling us that they are happy that all is well this far etc..

ok, I have waffled way too much so I am sorry about that! I just wanted to let ya know that I have been wondering how you went on/are doing.

Take care, ok,

K

A bit of an update!

Got another letter requesting I go and see a second neurosurgeon. Just got back and this guy is a spinal surgeon.

I am going to have another scan in a couple of weeks just to make sure that what they believe is the cause of the syrinx is the cause, although he said he would be genuinely stunned if it wasn't. Once that has been done he wants to operate.

Apparently everytime your heart beats it pumps cerebral fluid into your spinal cord and I've been advised not to do anything like weight training. I was about to start the gym this evening too!

Apparently the operation will put me out of action for two weeks but I have exams and uni to think about which is the only concern of mine, but then this is a bit more important I guess.

Thanks, Ryan.

Ryan

Been reading your thread, its much like a nice blog, and just wanted to wish you luck with the next scan and probable operation.

You may only be 19 but I'm very impressed with how you are dealing with it.

Take care, & hope the nurses are great eye candy to aid recovery!

I xx

Just to say good luck from me too Ryan.

I'm gonna fence sit for as long as I can with mine as at C3-4 it's got some big ol risks & I'm very incomplete, just seem to be suffering a lot more with pain & some function but it's not so bad for me to 'jump' for a while.

Anyhow, good luck & keep us posted.

Gaz

Hi Ryan,

Good to hear that things have been going on behind the scenes ( ie the Neurosurgeon contacted a Spinal Neurosurgeon etc). It sounds like this dr has good knowledge etc by the way that he has given you good practical advise as well as how long you will be 'out of action' in the hospital I would think.

I know that its easy for me to say, but with regards to exams and UNI, there are options. You can get extensions to coursework and also have rescheduled exams ( do then when others do resits etc). Looking at it on the bright side, you will get lots of time to focus on some of your studies when you are at the stage where you are in the hospital waiting for the surgery, and in the period where you are recuperating!

It must be daunting ( an understatement!) but one way to think of it is that its better to get it over and done with and sorted. At least you know where you stand ( pun!) and can then concentrate on your studies ( plus having a good social life and the works) without wondering if symptoms are going to develop or if they are going to call ya in for surgery out of the blue.

Previously, you mentioned that you hadn't really shared this situation with your mam etc. Did you decide to tell her yet? I hope that she takes it as well (as a Mam can!) when you do! ( sorry for the nosey bit, just as a Mum I think of that bit too!)

Oh, and I agree with Izziwhizzi, you have a fab/mature outlook esp when we compare it with the stereotypical one for lads your age, huh (I hope that doesn't sound condescending?!)

Let us know how you get on etc,

Take care,

K

Thanks for the replies!

I did tell my mum in the end lol! Well she found the letter in my house when she was round anyway!! haha!

As for school I thought I could try get the op to coincide with half term so I don't miss too much plus if I get myself completely in order and organised before I go in it will limit the damage ( at the moment I'm pretty unorganised as per).

Gaz - Good luck with yours mate, I don't know what yours looks like but mine is pretty developed, I wonder if it's due to the fat I used to go to the gym and lift weights that would give me a headache from straining as to why mine's developed so fast in light of what the neurosurgeon said...who knows...atleast I don't have to feel bad about not going to the gym now i guess

As for eye candy I was in this hospital when I first had my accident in the same department (neuro) and it's a university hospital. Some of the nurses were stunning so I hope I'm fortunate again and end up with the hot ones

Thanks, Ryan.

Just a bit of an update, had the MRI the other day but not heard anything about it yet.

Was a scan of the entire cord so took ages! And they didn't give me music

Went to see the consultant/neurosurgeon again today!

Having an op done. Basically theyre going to open up my cord clear the debris and fibres from the cord and then stitich it back up again iwth a bit of cow stomach. Not putting any tubes or anything in. He said there's no real risk of making my injury worse as it's at that level. The only risks are bleeding and infection, which they will give me antibiotics for. Having the op in 2/3 weeks and will be in hosp. for 3-5 days then I get to go home. The stitches will be removed after 12days.

I'm glad it's finally going to be sorted

Hi Ryan,

It must be a relief! I mean, you are bound to be apprehensive, but it sounds like the Neurosurgeon is confident and has gone through the risks of surgery with you. Sounds like it will be around Easter, so hopefully you won't miss too much of College etc, as I know that you were worried about that. Let us know when ya going in and if you need anything sending to the hospital for you! - oh and how you go on too..

Take care,

K

A bit of an update....

I was given an operation date of the 13th may...

My exams started on the 12th may so obviously I couldn't do it...

I phoned and told them I couldn't do it and haven't heard back since...

I phoned today and hope to hear from them soon...I'm definitely noticing things getting worse...

I'm getting burning sensations in my arms when I lift stuff, particularly in my left arm, and my hands and wrists also seem to have this permanent dull ache...Plus my hands are really shakey...

Need this sorting asap...I've got an exam on the 12th june and have a holiday booked for the 18th july so I need it sorting before then!

Hi Ryan,
thanks for all the info you've given on this matter.

Within the last month I've been aflicted with this strange buzzing sensation throughout my body, including some added heavy spasms here and there in the legs, and recently a buzzing in my ears(also could have to do with injury level, and level of possible syrinx).

Because my injury is higher, I'm loosing more strength in my grip/arms as time progresses.

Also, no fever, no raised blood pressure . . . no other symptoms to speak of besides this strange, low voltage, low shaking, weakening feeling.

So far I've had UTI, blood tests, and EKG done. The doctor thought he saw something on the EKG so has set up an apptmnt. with a Cardio Dr. I truly believe my heart's fine, and this cyst thing may be what's bothering me.

Doctors and tests are EXTREMELY slow around here. It's taken me a MONTH to get to where I am now, with my own self-diagnosis. I'm not really sure how long it'll take to set up this MRI but I'm sure Ill have to play the game and get this Debutamine Heart Stress Test out of the way before I can progress toward the spine.

Ok. Sorry for crashing your thread, Ryan . . . but I'm hoping you can enlighten me some more on your symptoms.

Thanks alot,
John

YOU GOTTA FIGHT, FOR YOUR RIGHT, TO GET WHAT YOU NEEEEEEEE'EEEEED! John, if you can travel, I'd go to Craig in Denver, CO., but if not, try and contact them cause I know they know many Dr.'s around the country that they could refer you, even if you are on Medicaid. That is why I wnt to move To CO. cause they are nonprofit and accept all kinds of insurance. It's like Disneyland to a 5 year old for SCI's where they just seem to help you and your family learn and enjoy all the great and wonderful ups n downs, lol

Gus, you got that right about the fighting . . . learned so much more than I ever thought I'd need to regarding the medical industry, and the wonderful and mysterious human body . . . and how they both seem to beat me up!! lol

Heard Colorado has great weather outside Denver . . . very temperate and sunny, as long as you stay below 2,000ft.

Good luck if you move...

I seem to be freezing no matter where I go unless it's over AT LEAST 85 ALL the time, lol. So I figure screw it. I'll live by myself, have the heater blasting, fireplace a roastin, but at least theres good help in the area. I'm sick of dealin with Dr's that don't know S T! I'll consider it my retirement, lol. For now tho, I'm headin back to AZ, due to circumstances, where at least they know what smells like, lol. Anyways. good luck my friend, and like I said in my message to ya, don't be afraid to go as high as you need to get what you need.

Ryan & Gus,
(Sorry I'm crashing again, Ryan)

I've recently been put on medicaid/ Medical ins. and joined the Scan HMO insurance end for cheaper rx, appointments, and tests. The down side is the hoops that you have to jump and the waiting game played to get things done. Ahhhh, medical games . . . what happened to when playing doctor meant foolin' around instead of self-diagnosing.

Anyway, I bull dogged my way into the doctors today and got the request submitted for the MRI!

Thanks for the info given. If I hadn't seen this thread, my Doc and I would still be clueless to what's going on with me!!

Gus,
This may be a stupid question, but does all your strength return to how you were before the symptoms weakened you? I'm thinking once the lines freed up again, than it'll be just as strong (with rebuilt strength, of course) as it was before, . . . true?
2 1/2 years post, and I felt stronger than ever, before this thing gripped me.

Also, Arizona's sure to cure your "cold blooded" issues for sure, esp. if it's Phoenix!!

Wish I was a Kennedy right now. He didn't have to wait 2 hours to get looked at. I'm going on over a month, with no surgery date lined up yet . . . but the MRI's a good start!!

To all the self-diagnosers out there!!!

Pretty major update!

I've had the op and am posting on my iPhone in hosp.

I had the op on Wednesday 18th June and have got out of bed for the first time. The operation was a lot more serious than I thought, I definitely underestimated it! I've been in a fair bit of pain and transfers, mine are normally excellent, Are pretty tough going even with help and a sliding board.

Don't see me being home for a while yet which is pretty depressing, it's like starting from scratch with sci not being independent etc.

Also beware of constipation, I've been here nearly a week and have had 1 pooh. Thus I'm pretty bloated and feel a bit rubbish! Also I am in a general hospital and they are a little clueless about the whole spinal injuries thing. They want me to go on a komode but don't get that I need to get to my ass with my hand to do stimulation. They think I'm being awkward which is really quite frustrating. It's taken a while to get them used to the whole spasm thing, which are really bad I might add!

All in all I'm not enjoying it but then I guess I just need to be patient! I'm finding itbhard having done the whole waiting and slow prpgress thing before!

Oh one other thing post op I did lose a couple of inches of sensation but that may just be a temporary thing, also I had a pretty bad burning sensation in my left arm. It did go but has returned slightly now.

Thanks, Ryan.

Another update! Quite overdue!

Had an MRI a few weeks post op and that showed that the syrinx was shrinking I've got another routine one in february :-)

I'm now at uni, transfers etc. went back to normal after a short ammount of time! One thing I have had is my spasms cause my back to arch sometimes and it is pretty painful, I'm not 100% sure it's due to the op but I think it could be related!

Thanks for all the advice and support!

Ryan.

Hey Ryan,

I'm so glad to hear that your syrinx is shrinking -- that is really great news. May your syrinx keep shrinking, your symptom relief keep growing, and your shunt remain clog-free.

For anyone interested in more info on or support for syringomyelia, I suggest you visit the American Syringomyelia Research Project site. This fine group of folks have the most extensive collection of scientific and experiential info on SM (syringomyelia) that exists.

I, too, have a syrinx. It's in my brainstem (so it's called syringobulbia instead). Fortunately, it's pretty stable and I have few symptoms from them (goodness knows I have more than enough from my regular SC damage post-tumor!) so I don't have to do much except monitor it.

Best of luck -- and keep those updates coming. There are a lot of people out here following you and cheering you on.

--HC