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Newly diagnosed Chiari and very confused - help please!
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Newly diagnosed Chiari and very confused - help please!

Hey everyone, this is trully a wonderful site - have had a good look round and I think it's great the level of support available here... Amazing!


I am newly diagnosed 26 year old female living in London and waited to share my brief story and ask for some advice as well.... I took part in a psychology experiment at UCL university in London for a friend which required an MRI of the brain whilst carrying out tasks. I did this and then forgot about it. Two weeks later, I got a call from the study organiser saying that he had found an abnormality. He called me in next day to look at scans and discuss. He gave me disks of the MRI and recommended I see a neurologist as he thought I had chiari of around 10mm.


Through my GP, and luckily work private health care, I saw Dr Weeks an AMAZING Neurologist in London in November. He looked at the MRI disks but said the quality of images was poor. He said we needed to get another MRI then discuss after that. I then fell down some stairs at home and ended up in NHS hospital trying to find source of severe back pain, so ended up having full spine and head MRI. The spine was clear so I was let out of hospital to rest at home for 6 weeks (just musculoskeletal pain)... Whilst at home, Dr Weeks called and asked me to come to London to see him, still in a lot of back pain.


I went up on Wednesday 19th with a friend to see him. He said in summary, and quoting MRI scan:


He had read my MRI in full and I did have Arnold chiari type 1
I have bilateral pointed herniated tonsils of 20mm extending to the inferior margin of arch of C1
Shallow posterior fossa
Retroverted Dens
Lower cervicomedullary junction at upper margin of arch of C2
Partial effacement of CSF at cranio cervical junction
Distortion of inferior aspect of forth ventricle


He asked me about symptoms, and genuinely I think I am doing pretty well in life except for the following:


Migraines since being a teenage that sort of come and go I.e. a really bad one about once a month, generally headaches 1/2 times a week
Recently nausea when I wake up unto about lunchtime not related to drugs or food
Always had very tight neck and shoulder muscles that cause a lot of pain especially as I work in a high pressure office job
Bad Headache from taking number 1 or number 2, which s bad but goes within an hour
Had clinical depression diagnosed in October, and started therapy


That's about it.... Then he said he is referring me to a neurosurgeon as the size of the herniation is about as bad as it gets before causing lasting damage, even though i only have fairly mild symptoms now. I have an appointment to see Dr Sanj Bassi on 8th Jan about this.


I'm really just trying to come to terms with the whole thing, but mostly how having this apparently huge herniation can possibly cause so much when on the surface I really am not doing so badly - especially compared to the horrendous pain many of you have felt.


So, a few questions, if I might?


Do you think it's likely a NS will want to operate on a 20mm size herniation?
Do you think the symptoms I have listed seem akin to those of early stage chiari?
Do you think these symptoms are likely to get worse if we don't act now? I.e. if I don't have major symptoms now, but do have large tonsils - is that enough to operate??
I've had a very adventurous life in general - for example two sky dives and climbed Kilimanjaro at 20000ft. Do you think any of that could have made it worse? Most of these have taken place in last 3 years...
Has anyone heard of Dr Bassi or been operated on by him?
Given I had little symptoms before, do you think it is likely I will make a speedy recovery?
How long is it likely before I could go back to a pretty stressful (and long hours) office job after a surgery?


Anyway, I know it's a long post - but I really feel very confused about all this - especially when it came totally out of the blue.


Any replies would be much appreciated! And I wish everyone a very very blessed and happy Christmas, in as little pain as possible.


Many thanks.


Jess
11 Comments Post a Comment
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Anyone out there??
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Hi Jess. Thank you for sharing your story here. I think that many of your questions are ones that we all had early on -- except for the one related to climbing Kilimanjaro, of course!

As you may have read here or elsewhere, the length of your herniation is typically less of an issue than the width. A very thin tonsil, despite being long, might leave plenty of room for CSF to flow around it. However, it seems from some of your symptoms that you may have obstructed flow. A crucial next step is a CINE MRI, also called a flow study, which will indicate how much your CSF flow is restricted.

Regarding your questions about recovery, everyone is different. I would say that you would want to plan for at least several weeks of doing not much at all. I have had four surgeries and I don't leave the house for anything other than medical appointments for the first 6-7 weeks. Right now I am close to five months post op and am just getting ready to start working again, which is typical for me. After my third surgery I was back at school and internship after about 10 weeks, which felt like way too soon. Going back to doing too much too soon can lead to complications, as many here can attest to. Again, everyone is different, so it can be difficult to plan for how long you need to be off work. What some of us have done is to return to work more slowly -- a few hours one week, a few more the next, etc.

I hope this is helpful and I'm sure you'll get more responses after the holidays. Keep us posted on your progress!

Claire
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So sorry no one has responed, but it's the holidays and people are gone.  I'll try to answer some of your questions as I have experienced them or others will be on to direct you to the right place.  This is an excellent site for support and info.  I'm glad you found us even though in sad circumstances.  I can't inmagine finding out about Chairi in the way you did, and finding the hernanation as yours is.  As others will tell you it isn't the hernination that really matters it depends on if it is causing blockage.  Mine was at 7 or 8 but I had blockage which created problems.  The fall you had probably didn't help your matter any.  It's sounds like your pretty active which is so nice to hear.  Now that you found out you have Chairi I suggest you take it a little easier though.  I wouldn't fall out of a plane any time soon :)  even though that sounds pretty cool.
As far as if the NS wanting to operate it will be your decision and it's not an easy decision for any one.  As my NS asked me "Is it affecting your life"?.  It all depends on the person I surpose.  As far as damage if left unattended.  I can say for myself.  I have nerve damage in my mouth which isn't very easy to deal with, but it's due to the blockage I had, but now after 2 1/2 years after surgery I still have to deal with.  I know it's a hard decision to make, but one that will come easier for you once you have seen the NS.  Finding a specialist here is the key and how comfortable you are with the NS that matters the most.  I do suggest this that helped me. Two things acturally.  1 is start making a list of syptoms (symptoms) or questions that you have so you will have this ready for your appt.   Also having a health partner helps you because a lot of times for me any way I didn't remember or hear 1/2 of what the NS had to say once he said surgery. As far as your Dr.  I don't know, but I know Selma has a list of NS referrals on this site which you can go to to reference, but it is by others expereinces with these Dr. not they are the best.  Others have had good experience with them which does give you some direction.  There are others on this site that will direct you in the right direction on this. As far as how long it takes to recovery or how long before going back to work, it all depends on the person.  As for me and my story.  Sadly to say, I had a very active job very physical and due to this I have never been able to return.  I was 47 when I had surgery, and ready on others stories, being young and healthy does make a difference.  Having surgery isn't a cure for Chairi.  I have to say I was pretty active before surgery, but had no choice in having surgery due to the pain and how it was affecting me and my family, but after surgery I still have syptoms (symptoms) and pain everyday.  As I said it all depends on you and your recovery.  I had to end up having 4 surgeries in all and I know this was a BIG set back for me.  So for me I kind of set myself up for disappointment because I had it all planned out on how I would have surgery. Go back to work.  Something I loved and I miss very much, but you have to do what is best for you.  I hope this helped you a little bit and helped ease some of the confusion.  I know how difficult this can be hearing you have Chairi and reading up on it.  It was pretty scary to read, but it is manageable.  I am happy to see you found this communtity, because we all have been or are going through what you are dealing with and we are here to help and support you.  Your not alone in this journey and know you now have a Chairi family who cares for you.  Wishing you the best in your upcoming appt.  
Linda :)
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Thank you both so much for the support and answers, it's really helpful to hear.i know this syndrome isn't a one-size-fits-all but that's good to understand.

I'm not sure if the neurologist was referring to the size of the herniation or the overall flow when he said 'this is as bad as t gets without causing lasting damage'. When we looked at the side view MRI of my neck the white fluid line totally stopped where the tonsils are on the right hand side, and he said the retroverted dens/odontoid is putting pressure the other side - I wonder does that get worse as well? Anyone have experience of if they do anything for this?

I'm not a melodramatic person at all - but it seems to me it's quite amazing I don't have anything more than headaches at this stage. Which makes it an even harder choice between a seemingly totally normal life and a sort of ticking time bomb, to having the surgery - and I could feel worse after than i ever did before surgery!

I haven't seem any reports on here or elsewhere online of Dr Bassi my neurosurgeon - but he works in the same practice as Dr Richard Selway who has been mentioned positively a few times so I could see him as the second opinion....

Do you think any of the skydiving/climbing mountains could have made it worse? When I climbed Kilimanjaro I took diamox the whole time and felt great - only normal headaches. When I climbed a 14000ft in Colorado this summer I felt horrendous.... And I got really car sick and huge headache which no one else in the party got? Also, after I fell down the stairs in November, the whole evening I felt really sick and big headache. Which is why I didn't think I had any back problems until ages afterward....

Ps - if you go to YouTube and search Kilimanjaro kristy jessica 2011 machame - you will find the video we made of our climb since we were raising money for charity....

Appreciate all the help!

Hope you're all having relaxing and pain free holidays

Jess

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Hi Jess,
Thank you for sharing your story. It sounds as if you are able to manage very well with your herniation, It seems to me that your physicians are trying to prevent permanent neurological damage. Only you can make the decision as to when surgery is right for you. I am having sugery at the end of January...and am very hopeful that I will only be out of work for 6 weeks or so, but like you said..this isn't a "one size fits all" syndrome. I am glad for you that you have physicians willing and able to help, that's half of the battle for most of us.

Thanks for joining the forum. Keep us posted.
Michele
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  HI and welcome to the Chiari forum.

U got some good info from the other posters already....sorry I was MIA for a few days....

Since u r in the UK u can look at a list of Drs for Chiari on the Ann Conroy Trust...and the list is only here for u to use to research Drs it is not a referral....but u may want to see if the Dr u r going to made the list.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569

One question I saw I do not think the others commented on was the retroflexed odontoid....there is corrective surgery they can do if when doing the PFD it is still causing compression of the brain stem.

The best way to understand how the odontoid is affecting u is to make a circle with ur pointer finger so it sits at the base of ur thumb and the knuckle of ur thumb rests on the first knuckle of ur pointer finger......consider that open space the foreman magmun.....
now take the pointer finger from ur other hand and from the bottom slip it thru holding ur hand with the circle with ur thumb parallel with the floor and the pointer u slipped thru in to the first knuckle and pointing toward u and downward.....see there is space above and to the side... this pointer u slipped inside the circle is representing ur odontoid...now slowly turn that finger to point in the opposite direction it is now...see how the open space narrows...now imagine ur cerebral tonsils hanging in there as well...and as ur turn u turn into ur brain stem....

Not all odontoid bones r retroflexed completely around and many times the PFD gives enuff room to restore flow and nothing more is needed...and yet others may have that compression into the brain stem where they do need to use traction to relocate how ur head is settled onto ur spinal cord to keep it above the odontoid bone....a fusion is usually done when this is the condition.

  As u found out we all have similar yet very different experiences with this condition.

Please keep us posted on ur journey.
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Thank you Michelle and Selma! Michelle - thanks for the support and I agree... It seems to be they are trying to prevent long term damage to me too....

Selma - that's very helpful indeed and I can see why my MRI is showing this hour glass brain stem because the tonsils and the odontoid seem to be pressing from both sides. I will definitely be asking mr Bassi about both the herniation and the odontoid...

I don't think I have any more questions at the moment but I will keep you all posted after the 8th.

Really appreciate the support - I'm getting a lot of blank faces elsewhere!!

Jess
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Hey all, just come back from seeing Dr Bassi. Well, first and foremost he has great people skills for a doctor, and most importantly he really knows this area well. He says he sees hundreds of people with this, and 99% don't require any treatment, the good news for me is that I don't need surgery at this time. Although there is lots of crowding, he said the fluid has managed to get around the other side well enough, and that my retroverted odontoid is within normal range. So there is no build up of fluid in bran or spine - so essentially my body has been able to adjust flow from birth to this, and that it would have been like this in the womb.... He said I should come back in 12 months for another MRI and if no change then that's it forever! He said my weekly headaches and headaches on strain and sore throats and back pain is all chiari but since I can cope, surgery isn't good idea.

He seems very very sensible to me and explained everything so clearly.... It was hard to take it all in as my neurologist was convinced I needed surgery.... I guess the surgeon is the right one??

Thanks for all the support here, I was very nervous beforehand but looks like my life doesn't need to change really... Just cope with current symptoms.

By the way he also said I can still sky dive as I'm more likely to have other injuries from that than chiari related! He said I can do all types of activities, have a baby etc. was very encouraging....

He also said that it won't get any worse from now, and my body seems to cope. If I was going to have a syrinx I would have had it by now (26)...

Does this tie in with everything you guys have heard before?

X
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  At ur age I may have gotten some info like that if MRI's were done...but I did get worse with age and did not get a dx until I was 48...so things can change and to say it was like this as a fetus,.,no kidding it is congenital we all had it from birth....that does not mean it will not change if it doesn't in a yr.....I had my symptoms cycle over the yrs, but as I got older the bad cycles lasted longer and I got new symptoms....

This Dr may have known what to say for u ...but I would still want another opinion.....especially since he did not feel sky diving was an issue...JMHO
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That's what I thought... Given I'm not asymptomatic it seems to fit that I may not be like the rest of the 99% who don't know.... Maybe I should get a second opinion, trouble is my family and everyone now just think 'great, that's over now - what was all the fuss about?!' which I can sort of understand.... Except they are not the ones with it!

I think what he was trying to say with sky diving is that you have more chance of just dying all together than something chiari related - which could be fair! But I didn't understand why he wouldn't want me to be cautious of trauma.... Bit strange
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Hi there. So glad that your symptoms are mild at the moment, but the others are right. This condition does have a tendency to get worse. When I was 26 my symptoms were mild too, although I wasn't diagnosed until 2009 when I was 36 years old. I knew there was something wrong, but my doctor always found ways of explaining it all away. I used to go in with a huge list and be told to just mention 2 things as there wasn't enough time in the appointment. So, I could only ever give them part of the story. I do still manage extremely well considering that I have pain throughout the day. I think I've had this pain for so long that it is now my 'normal'. My advice to you is to research Chiari and keep an eye on it. Also the bit about having a baby......just be careful because if you are already experiencing headaches when you go to the toilet, how do you think you'll feel when you're in labour. I had a terrible migraine whilst in labour and 'something' happened when I'd given birth. I can't explain what happened, but to me it felt like I'd left my body, then I heard somebody shouting 'breathe'. I am attempting to get my records to see whether anything was logged at the time. Sorry to have to tell you that, but I feel you should have all the info from the people who have to live with this....not the professionals. After all, there are so many doctors etc out there that don't believe Chiari is a problem. Good luck
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