is surgery the best option ?

[h_r]

I was diagnosed with Chiari 1, 5 months ago with a herniation on 13mm and a 5mm syrinx,
My Neurologist said that, due to my symptoms (painful headaches, tinnitus, dizziness, painful limbs, numbness in my hands, tremors and irregular eye movement) that surgery was my only option. I then went to the NS, fully expecting to get a date for my surgery, but I was told that I would be given another MRI in 6 months. I'm now at the stage where I am going for pain relief injections in my back. My new MRI is due in November, and my surgeon said if there was a difference in my condition that he would operate.
I'm concerted, like I'm sure may others are, that the operation will worsen my symptoms rather than relieve them. I'm aware that there is no cure for Chiari, but it would be pleasing to have some of my symptoms lessened. It is comforting to hear so many success stories after decompression, but I'm still worried about the risks.
my NS has told me that surgery would be better now rather than later as I'm 17 and at such a young age, the surgery is harder, but there is a shorter recovery time apparently, although I'm not all that sure how that would work.
I'm also concerned that I'm traveling abroard on a long (about 12 hour) flight next october, and if my surgery is some time next summer, will i beable to take this flight?
thanks in advance  (:  

[n40066]

; )

[*Stormy*]

LMAO....that's all I have to say :)

[h_r]

Hey, thankyou so much for the information on the medication and the English based doctor, i will 100% be looking in to that as soon as i finish typing this message :)
thankyou so much guys, your all brilliant
Hannah - Rose x

[n40066]

i do amitriptyline with cyclobenziprine!  what a cocktail we all make!  lol!

[*Stormy*]

Hello,

There are a few UK members here but I am not sure how often they come on. However, when a friend of mine in the UK was checking out the possibility of having Chiari she went to this NS and she said he was excellent and was well versed on Chiari. I have also heard a few UK members here mention that they are going to see him but I don't know if they have yet. His name is Dr Sanj Bassi - he works private or NHS. If you google him under that exact name you'll easily find loads of info for him. He's based in London.

Also, I am on Amitriptyline in addition to the Lyrica. So I am not sure how well Ami works on it's own (my sister said it didn't help her at all) but I did find that it helped taking the two of them together. So, you may not want to give up on the Ami but ask your Dr instead about trying something along with it. Plus, they do start you at a really low dose b/c it is actually an anti-depressant but your dose may be too low to be helping you. It does pay at some point to try and find something that works, I was really stubborn and didn't want to take any meds for a long time and then realized I was causing myself unnecessary pain. Now, with the meds (and being post op) I find that I have a lot more good days than I did before. Hopefully you will find something that works for you!
Carolyn

[n40066]

i believe there are two other young ladies on here from the uk but i can't remember their names to save my life right now......selma??  help???  lol!

[h_r]

Hey guys,
thanks again for getting back to me, your all so amazing, i'm so glad i found this forum :)
i'm already on amitriptyline, and i have to say i agree with LisaRiu, i"m not impressed with it at all (and i've been on it for nearly 2 months now, so i'm sure that if it was going to work it would have done so by now)
i'll debate letting my hair grow, but i do have to say that i'm quite a fan of it short, its just so much easier to ,manage haha.  
i'm pretty sure that i'm going to go forward with the surgery if i'm offered it again after my next MRI, but i'll look into finding a specialist - on that note, anyone know of a Chiari specialist in the UK at all? i've looked in to NS in the states, but there is no way my medical endurance will cover me going abroad.
Thanks again everyone.
- Hannah - Rose x

[pr1nsis]

Hi!

I wanted to let you know that I'm 26 and am on day 15 post surgery!  

I too, read a lot of horror stories on the internet and wanted to share a positive story with you!  I was in the neuro-icu ward for 3 nights (it should have only been two nights - but the hospital didn't have a regular room available for me).  I went in on a Friday -  surgery was about 2 1/2 to 3 hours - and was released early on Monday morning!  Sure, the pain isn't 'easy' but i would personally take a few bad days to help get me back to feeling like myself again!

I have had about three 'bad' days since i got home (two of which were caused by me not taking my pain medicine (trying to be 'tough) and one from over doing my activities the day before (i do have a sweet 2 1/2 year old who i thought i was ready to take care of).  Every day - im feeling a little stronger and little more like myself!!

As far as your hair - please look at my pictures!  my hair is past the middle of my back - and when my hair is down (or in a long pony tail) you cant even SEE my incision!  (i also feel that the hair protects it when im out too - silly im sure - but i feel it adds a 'layer' between the 'stuff' in the air and my incision!!

good luck!!  and know - that yes - sometimes the mulitple surgeries happen - but sometimes they DONT!!   (my doctor also said that once i've completely healed - that I can ride roller coasters and if i happen to get pregnant again - that a natural child birth is still an option for me.  and i read online that both of those things were out of the question for me!!)

~jb

[LisaRiu]

Hi,
I agree with the other comments about the surgery. It really is your choice, but at least you have been offered the surgery. You need to ask yourself some questions and keep an open mind. Reading about things on the internet can be extremely useful, but can also make you decide against something that could possibly change your life for the better. You are very young and have a lot of life still to live. You just want a good quality of life like everyone else. Ask the NS questions (write them all down), they shouldn't mind answering them if they are any good.
Regarding medications or treatments - different meds work for different people and I agree the side effect can be worse than what they are supposed to be treating. Yes, be aware of the side effects of meds, but dont dismiss them before you've given them a go. I am a nurse and I know that if anyone taking any med has any sort of adverse effect, it has to be reported regardless of other meds they are taking, and then gets added as a possible side effect of a drug. In truth, it is possible that 1 person in 1000 could get some of the side effects, sometimes more, sometimes less. We are all different. If something doesn't work for you - get it changed, but you've got to give meds a chance to work. I was prescribed amitriptyline for nerve pain and was not that impressed (my husband also had this for phantom limb pain and it was as good as useless), so when I was given it, i thought it'd be rubbish. It was to begin with till they upped the dose, now i am getting about 50% less nerve pain. I usually take paracetamol & codiene for bad headaches & back pain. Doesn't really solve the problem, but it relaxes me & makes me feel better.  I also attend physio twice a week to 'improve my balance & co-ordination'. They also put a heat pad around my neck for 15 mins to ease the neck stiffness - this does help at the time, but doesn't last long.
Please do what you think is right for you.
Take care
Lisa

[n40066]

hi heather!
i agree with selma...don't cut your hair anymore!!!!  lol!  they don't take that much and it can be easily hidden by the hair on top if you leave it longer!!!

find a true cm specialist and talk to them.  odds are they will suggest the surgery.  as they others have told you, your condition will only worsen as time passes and with the syrinx, you run a great risk of perm. nerve damage.  you are too young to have to live with that!!!  please keep doing what you are doing and that is talking to people and research!  when you find a dr, talk to others about their experiences with him/her.  make sure they are a specialist in the cm/sm field.  that is the single most important factor in the "get better" equation, my friend!!!
best of luck to you and i hope you'll keep us posted!
elizabeth

[selmaS]

HI Heather Rose....not too many meds that really help the issues chiarians have.....in fact many meds can cause more ringing in the ears...so do be advised to check side effects of the meds u do take.

Also in the meantime let ur hair grow....most drs work around the hair and it helps camouflage the scar.....it may take time to even out, but u can cut it at that point....wait to see what ur NS  prefers as far as hair is  concerned.

Different relaxation techniques help with the HA's and pains....see the Thursday's thread for ideas.

"selma"

[h_r]

Thank you all for getting back to me so quickly, honestly you have no idea how wonderful your help is.

I think, on a personal level i really want the surgery, but, (probably my own mistake) i've found some horror stories on the internet about people needing sometimes up to 20 surgeries, and knowing my luck, that would be me...

I was told by my neurologist when i was first diagnosed that i'd need the surgery and that i had no other alternative, so i prepared my self for the visit to the NS by cutting my mid length hair in to a 'pixie cut'.

The only thing stopping me from having the surgery is the fear that my symptoms wont go, i'm aware that all my symptoms wont be 'cured' but i'd like maybe the headaches, backaches, dizziness, and ringing in my ears to go. The symptoms are starting to interfere with my life, i don't know if i can do without the surgery.

Does anyone know any good medication out of interest? anything that has eased their symptoms pre op ?

Thanks again :)
Hannah- Rose x

[selmaS]

Hi and welcome to the forum.

First...the surgery for chiari is not a sure, a fix or a way to feel better completely...it is a means to slow progression of the condition...for many that means to avoid the formation of a syrinx....once u have one surgery may help it shrink or at least stop from getting larger.

Do be sure ur NS is a true chiari specialist...get a few opinions and go with the dr u r most comfortable with.

Waiting once u have a syrinx may only lead to possible nerve damage if the syrinx continues to get larger.

"selma"

[Jennyfoo]

Well, I'm older at 33, but yes surgery is the best and really only option. If you have a syrinx, it can cause irreversible damage to your spinal chord. CSF flow is interrupted, so your syrinx will likely get worse.

As for me, I would welcome surgery. I've still got my local, miseducated doctors telling me that my herniation is too small to cause problems, except my Opthamologist who found I have optic nerve swelling from intracranial pressure,  and recommended surgery, even recommended a surgeon who apparently never reviews her referrals or makes appts. I'm now trying to get in to UCSF.

My life is absolutely miserable is why. I have become a complete shut-in. I can't enjoy much at all. I suffer from extreme daily pressure headaches, dizzy spells, numbness in my hand and arm, weakness in my arm, severe elasticity in one of my legs, I can't communicate well anymore due to brain fog, my body can't regulate my temperature correctly and I sweat like crazy all the time so bad that I'm always dehydrated. I have 4 kids 12 and under that I just can't take care of most of the time. I'm depressed like mad after living like this for 8+ months now.

You need to find a chiari specialist. With your larger herniation and syrinx, you should have been an immediate surgical candidate.

[maryanne592]

Could you please me some more about what is Chiari, I am not sure in what that is.....

[jessbee82]

Hey,
I thought that you would like to hear from another young person.  I just turned 20 on the 1st.  I have Chiari Type 1, 8mm herniation with blocked CSF flow.
Whether or not you want surgery is completely up to you.  I haven't had surgery yet, I am however going to see a neurosurgeon in Jan to see whether or not I am able to get surgery.  If surgery is an option then I will get it, here's why: everyday I suffer from headaches and or migranes, I have so much tension in my body that I can barely stand to be in my own skin, I am very forgetful and 'brain fogs' are frequent, I have very bad nausea due to the headaches, scoliosis etc etc etc.  As you can see, I have so many symptoms that this is really effecting my life, so I will get the surgery because I am out of options.  I have had everything under the sun checked and I am at optimal health at my young age.  
As for your Doctors - I would recommend seeing a neurosurgeon rather than a neurologist.  Chances are a neurologist is going to tell you that you don't need surgery and that it may all just be 'in your head' (haha).  My neurologist told me that I had emotional problems due to a turbulent childhood and that I needed to seek professional psychological help.  I later found out that the bottom of my CT scan was cut off, so she shouldn't have made such diagnosis's as a professional.  Then I decided to go straight to a neurosurgeon after speaking with other post op Chiarians who said that a neurologist probably won't recommend surgery because it is not their area of expertise.  My neurosurgeon also told me that I do not have Chiari Malformation and I do.  Proof is in the CT scan and MRI.
If you decide that surgery is the best option for you than you need to find the right Dr.  For some reason Dr's really like to sweep Chiari under the rug.  I have found that if I didn't do my Chiari homework, speak with other Chiarians and direct my Dr on where I needed to go then I would be stuck in a hopeless world of problems and pain.  I say do your work and get what you need/want.
As for your MRI, I think that your Chiari will only 'worsen' if you continue to have blocked CSF flow.  I don't see how your herniation will 'grow' because you are almost done growing.
As for flying - this is a great question to ask your Dr.  I am asking the same question to my neurosurgeon when I go to see him.  I have read on this forum that most post op's get alot of stiffness in their neck when flying and some even have a massage appointment booked for when they arrive to their destination.  - There is a forum topic about flying for people with Chiari, I recommend finding it.