Chiari Surgery - yes or no?

General
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Hello -

I joined this forum over two years ago when I was first diagnosed. But then I was told my dizzy/balance issues were more severe than typically seen with Chiari.

Has anyone else ever been told that? Do others have what they would consider pretty violent dizziness with head movement?

Long story short in the last two years I’ve been diagnosed with Dysautonomia and POTS and vestibular migraines. I had a neuropsych eval done that showed diminished fine motor skills particularly in my dominant hand in addition to cognitive impairment.

Then I was reading an article that said diminished fine motor skills can be a sign of Chiari and a light went on. Because Dysautonomia and chronic fatigue wouldn’t really explain worse results in my right hand than left.

Anyway, saw my neurosurgeon again and wore a vista collar again for two weeks with no improvement. He said I do have brain stem compression and he would do the surgery but I would have to go in knowing we could have excellent to no results.

The surgeon is Dr. Dan Heffez. I feel confident in him as far as the research I have done.

I am very limited by my symptoms. I am no longer working. I can’t drive on the freeway. I have dizziness daily. It’s difficult to get through a grocery shop a lot of days and I can only go to certain stores. Lots of visual disturbances. Constant tinnitus. Pain on/off in the back of my skull and neck and eyes. The list goes on.

I would be grateful to hear anyone’s thoughts based on their experiences.

Thanks
Kaitlyn

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Yes it can be related to Chiairi. My dizziness comes with my headaches and especially when I need to look up for any amount of time. Clumsiness also comes with it. But what you need to do is to see if you can get an MRI done to see if this is what you have, don’t want to give you any ill advise but our support is with you. Wishing you all the best!

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Thanks Tazz! I guess I wasn’t clear. I have had an MRI and I do have a Chiari. It is on the smaller side - 3 mm but it is causing brain stem compression. Dr. Heffez’ research shows that size is not connected necessarily to severity of symptoms and he contends that the 5 mm clinical requirement is not an accurate assessment. Thanks again!

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Hello Kaitlyn,

I know how you feel about dizzy/ balance issues and it is related to Chiari. You are not alone!
When I was diagnosed that was the first symptom I had and it is horrible!! My whole life I was over 100% coordinated, athletic, in contact sports, and always active.

Then in March of this year it hit me like a brick wall. Had to stop everything I loved! I have constant pain, lightheaded, dizzy (especially with more movement), double vision a couple times, migraines for weeks if I do too many tasks in one day, blurry vision, itchy eyes, about to fall over a lot, breathing difficulties (probably have POTS, have every symptom but never been diagnosed), seeing black spots, constant tinnitus, jump easily, memory loss, foggy brain all the time, ringing in my ears, spaced out, a limp when I walk on my left leg, weakness, numbness in my face, tightness in the chest, face spasms, and the list goes on.

Since my diagnose with Chiari Malformation I, I have seen 5 neurosurgeons and every surgeon says my Chiari is highly Severe and I have only a little bit of brain flow. They also said its severe because my symptoms have hit me faster then normal Chiari. Especially lightheaded and dizziness.

I am going to Dr. Dan Heffez and having surgery on Nov 28th this year! He is an excellent surgeon and is very knowledgeable with his research/studies. As you already know because he is your surgeon as well. Terrified of procedure, hospital, and especially needles/IV’s but I know I will have a better life with reducing my symptoms. Even though there is a chance not improving, you just have to look at it, in a positive light knowing you’ll get better. Hope my comments have helped you out.

I hope your pain improves for you. Good Luck with everything and I wish you the best!

Ashley

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Good luck Ashley I am wishing you all the best on your surgery.

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Kone I can relate to the dizzy spells and hope you get the answers you need. I know the last neurosurgeon told me I don’t have another year to wait for surgery because it could cause me more neurogical damage. So I’m just waiting and hoping i could do it in February because I’m in the middle of packing and moving.

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Hi Ashley -

Thank you for the validation! I know a lot of Chiari patients have headache as their primary symptom and I do/have Chiari headaches. At times so bad I have had to go to bed. But I don’t have them on a daily basis and I think that is what is discouraging Dr. Heffez from guaranteeing me more of a result. But I think I have pressure in the back of my skull more than I realize. I think I have learned to tune it out just like the tinnitus and some of the other symptoms we live with daily. Of course when they are extremely bad you can’t tune them out. I would say my dizziness is a more primary symptom for me than the headaches. It is more troublesome and more debilitating. I am trying to weigh this all out and make sure that it makes sense to have the surgery.

I appreciate your input and validation regarding your symptoms and knowing dizziness was your first symptom as well makes me feel a bit less crazy :)~

I understand what you’re saying and sorry for your hopefully very temporary loss of activities. I also was super active and athletic my whole life. 7 years of martial arts training, ranked in 3 systems, yoga, weight training, hiking - active all the time. Always in motion. I have actually gotten some benefit from having to slow down though as well. My body did not give me a choice on that one so I have made the best of the last 3 years while sorting this out. Funny you use a brick wall analogy - that is what I always say. I hit a brick wall.

I wish you the best with your surgery and please let me know how it goes when you feel up to it if you feel inclined. I will think of you and send positive energy to St. Mary’s on 11/28 =)
Kaitlyn

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Thank you Tazz!!! I appreciate it!!
Hope things are going well for you!

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Decompression surgery is a serious surgery to recover from, as I’m sure you already know. Unless you have underlying physical issues from the Chiari, like Syringomyelia, Hydrocephalus, Spinal Bifida, just to name a few, I would take a conservative approach. I have Syringomyelia with 2 Syrinxes.

I was 41 when I had the surgery and yes, it reduced my headaches to some degree, but I am just different now since the surgery. My cognitive ability and motor skills, I believe have degenerated since surgery greatly. Also, I believe because I was older than say some of the children or teens, twenties, etc. I read about, it was hard for me to heal and recover (I don’t know your age).

Interesting enough, all the signs were there when I was a child. However, doctors never tuned into it unfortunately. My parents would take me to the doctors with complaints of headaches, dizziness, fatigue, melancholy, etc. Blood was taken, never MRI’s prescribed, and I just got used to living like that. Until one day at work, my body started to shake, and I started to cry. It was as if I took a handful of stimulants. So, I left early that day and went to the hospital. That is when it all got diagnosed.

So, my advice to you would be to take a very conservative approach. Get second or even third opinion. It’s hard to recover from this surgery and the older you are, the more it changes in your life.

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Dizziness and balance issues of Chiari are no fun. Please refer to my posting in “Newbies Guide to Chiari” titled “Dizziness and Chiari”. The article outlines excellent exercises that dramatically help with dizziness. If you have any questions about them do not hesitate to ask me. They are physical therapy in origin and I highly doubt that any doctor will give them to you. If you are up for a little DIY care, give them a try if you are tired of posting here that you are dizzy or telling doctors that you have no balance when they have no solutions for you. I am sure that this quote is from an advertising campaign but “you are worth it”

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Catlover72 - I am sorry to hear you didn’t get the results hoped for with your surgery. I know it is different for everyone. I wish that you felt better!

Who did your surgery? If you don’t mind me asking. If you don’t want to say that’s fine. I just know that the surgeon can have a big impact as well.

It is a difficult decision to make and I haven’t made it yet. I don’t have the additional complications you mentioned, but my condition(s) is definitely disabling and has greatly impacted my life to the point that I don’t recognize my life. That isn’t to say it’s all bad. There are still things I can enjoy but they are different things. There are so many things that I used to do that I am unable to do - they are simple things that most people take for granted. I know you understand.

Thank you so much for taking the time to post. I appreciate it.

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Tazz - good luck with your move. Please take it as easy as you can. I know lifting too much is a definite on the not to do list! I hope you can have the surgery before more neurological damage is done. Best of luck!

I

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Hi gabby - thank you for the post! I am always willing to try just about anything. Exercise was top on my list before I got sick(er). I used to be so coordinated and yet, even graceful lol. I will check out your posting and see if the exercises are something I can try =)

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This week I had a cousin come over a couple times and she was a great help because my husband has spinal issues so between the 3 of us we got a lot done with his stuff. You know how boys are with there toys hehehe.:joy::yum:. But we got lot done with throwing things out. But I know if i take my time and deal with what I can each day. I was also able to take an extra few daysoff work this week which helped. Before I need to move I am going to apply for sick leave so that it won’t be so hard on me. also most of my move will take place close to Christmas and 2 of my 3 cousins who can help me with the move will be off work at that time.Thanks for well wishes.

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Good luck with them. Take them slow. It is hard to add all the components at once. They are worth the effort it takes to do them right ie Improved dizziness!

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Hello Kaitlyn,

Sorry for such a late response, been busy getting stuff ready for surgery coming up and haven’t been feeling well.

Your welcome for the validation! Yes that must be very discouraging and I’m sorry :frowning:
I know what you mean about learning to live with the symptoms, I do the same. Good luck with weighing your options if surgery is for you or not. It takes awhile to decide and every one goes at there own pace.

It took me at least 9 months of deciding after being diagnosed but 14 months of pain/symptoms. Especially when I convinced myself I do not have Chiari LOL! But I really do, I was just trying to ignore all the symptoms. I decided to do surgery because I am tired of missing out on life and being active.

Your welcome, LOL! I thought I was loosing my mind as well when dizziness is all the time!

Thank you, wow you were active too! Definitely same as me, high intense workouts and being active 24/7. You are right about having the slow down benefit, did it take you awhile to slow down? It drove me crazy at the beginning of not being about to do much. Our minds think alike LOL brick wall!

Thanks for your wishes with surgery and I will let you know how it goes! :slight_smile: thanks for your positive energy! Hope things improve for you and good luck with deciding!
Ashley

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Hi Ashley

Sorry to hear you haven’t been feeling well. Hopefully you can rest up and go into the surgery as strong as you can.

Yes it really made me smile to notice how much we seemed alike :slight_smile:

Ah yes - denial is a powerful thing! I don’t have Chiari, or Dysautonomia or POTS - until smack! There’s that brick wall again lol

Feeling tired and brain foggy but just wanted to get back with you. Get some good rest!
Kaitlyn