Dizziness Primary Symptom In 6 Year Old Boy?

General Parents and Caretakers of Children with Chiari
1

Update on little Sammy.... we met with the head of Duke Pediatric Neurosurgery, Dr. Herbert Fuchs, yesterday. He was very kind and seemed very knowledgeable. Sammy's primary symptoms is dizzy spells that can occur up to 10 times a day, and sometimes get so bad that he needs help on stairs, or help doing things, or won't play because he feels "off balance". His other symptoms include, in order of severity and occurrence: arm and leg pain, arm and leg tingling, right sided headaches... but the MOST life impacting is the dizziness.

We have taken him to an ENT, and opthalmologist and a cardiologist, none of whom found a reason for his dizziness in their area of expertise. Dr. Fuchs acknowledges that dizziness can be a symptom of Chiari, but (in 28 years) has never seen a child present with this as his primary symptom. Based on the process of elimination, and the other symptoms, he recommends decompression surgery. This will likely happen at the end of July... but he cannot guarantee it will fix the dizziness, so- of course- my husband and I are in absolute parental hell.

What if we are wrong? What if we decompress him and the symptoms continue? Should we put him through this when no one is absolutely sure???

I guess my question is this: Has anyone ever seen Chiari present with dizziness as the primary symptom? If so, did you decompress yourself or your child? If so, did it help?

We are so concerned about putting him through this, but we don't know what else to do. When it gets bad our 6 year old can sit calling for help to go down the stairs, and the look on his face of resignation and sadness is something no child should have.

Thank you in advance for your time and opinions... I am so grateful to have this group for questions and support.

2

This was one of Julia's (10 year old 5.8 herniation no syrnx) primary symtpoms, she was decompressed on 5/15. (decompression surgery, c1 laminectomy and duraplasty). She was admitted twice before due to fainting and dizziness. She would tell us she felt like her head got heavy and felt off balance. I will say when she was first diagnosed with Chiari symptoms started filling up the check list. Looking back she did experience the classic "chiair " headaches after coughing or sneezing but we said "growing pains" as it was happening now we know it was Chairi related. SHe also had blackouts, tingling in her toes and just espisodes when she would lose coordination, we just thought she was clumsy- My husband and I were in the same exact place you are (cardio-normal, ent-normal, endo-normal)- even neurology at first said normal, the chiari 1 was an incidental finding according to the first doctors we saw. We decided to go ahead with the surgery to alleviated the progression of her symptoms. She still has chiari and always will, surgery is not a cure but a treatment. We just wanted her to have the best chance at a pain free life. She has not complained of any chiari pain since the surgery but we are only 5 weeks post op. I know how you are feeling right now so I am thinking of you and praying for strentght for your family as you go through this, I know you will make the right decisions for your little one! Much Love,

Nicole (sorry for any errors, I am a horrible speller!)

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Hi,

I wanted to share something with you in regards to the dizziness. Dizziness is one of my chief complaints as well. I have an acquired Chiari due to, starting with a large brain cyst and shunt. When doctors allowed my shunt to overdrain for too long - months, my brain began to sag and I developed a "significant" chiari, of over 8mm. Dizziness has plagued me for years and have contimplated the decompression surgery, but have been told by neurosurgeons that they are afraid they will make my sagging worse, so they won't touch the chiari. I've been told I needed to go to the Chiari Institute in NY to see if they can help me. But have not yet. I went through a divorce last year, lost my insurance for a while....and just one thing after another. But....if I could get rid of the dizziness, that alone would be worth it to me. Stairs for me too, are very hard. Driving can be tough, and have to not drive on days I feel bad. Anyways, I would say that it would be worth going through the surgery to get rid of that. I hate not having balance etc., just things that most people take for granted. And your son would have a much better quality of life - I am so sure, if he could get over the dizziness with surgery. That in and of itself would be a huge feat and a positive outcome for him. I speak from experience with that.

If you need to consult several physicians/surgeons about it....I would. But to watch your child struggle to get up or down stairs would be tough. I know that if it were one of my boys, knowing what I know now....in a heartbeat I'd get him the surgery to help him be able to live life the way it is inteded and not suffer or struggle. Not saying he won't still have some struggles....but dizziness is a hard symptom to fake, look past and overcome.

Good luck to you all.

Maria

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Dizziness, double vision and memory loss are the main symptoms that make we want to go absolutely crazy. I am going through with the surgery on July 12. I can let you know after I have it done. I now walk with a cane and hard time working because the screen is hard to read with the vision problems.


I wish you all the best of luck and pray that Little Sammy gets better soon.

5

My Chiari symptoms have seemed really mild until just three weeks ago. Now, though, things have changed dramatically.

Dizziness and leg pain are my biggest problems these days. The leg pain has been constant since June 4. I am on day four of dizziness. I first really noticed it Monday, while driving, and it made me feel quite unsafe. If an emergency required it, I could just get in a car and drive for hours, but I wouldn't want me on the road. I don't feel safe.

So, maybe dizziness isn't the symptom at the top of most Chiari lists. But, it seems like it is certainly on the list.

No, no one gives you comfort on whether the surgery will cure things. It is maddening, but understandable. On the other hand, it seems very clear to me that without surgery, things get worse. I haven't seen it confirmed, but it seems also as if sooner is better than later for surgery.

People talk about taking months and years to recover from surgery, but I wonder if that is really true. My healthy 15-year-old just had very similar surgery to drain a cyst, and is recovering disgustingly fast. So, the surgery itself, while difficult, doesn't seem to be the biggest issue. The biggest, longest part of Chiari recovery may well be recovering from the long-term symptoms. If this is so, then, again, surgery earlier is better than later, and should lead to better long-term results.

It is hard to subject your child to surgery. I just think, though, that surgery is the only real hope for improvement when Chiari is the root of the trouble.

Good luck with your decision. The way I handle these things is to let it sit for a while. Pray about it, if that is something you do. Wait a bit. I think it will become clear. Then, be strong, be prepared, and you will get your Sammy through this.

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I'm so sorry you are all dealing with this! I can't imagine a child dealing with these issues! I am 35 and those were my biggest complaint of my symptoms. I felt I could live through the pain, but the dizzy and passing out or feeling like passing out wasn't ok with me. So I did have decompression surgery, in the hopes that it would help those. You are correct in understanding that surgery isn't a cure, but a possiblity that some things might be helped. I found that for a while my sypmtoms were better, not gone. Then about 7 months after surgery I started to feel a little of the small "off balance" symptoms again. Nothing like before though. THen a year after surgery a major episode of black-out and dizzy spells. it has mellowed out again for the last year. I do think I feel better in some ways since surgery, but I still have symptoms. I would still do it again. It didn't hurt me, as far as making it worse so I find it ok, not a success, but ok.

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My daughter's cheif complaint is not dizziness but headaches. I don't neccessarily know about the dizziness part, but as far as the unsure part I am right there with you. They are not entirely sure the Chiari's is the culprit for the headaches, but are continuing with a decompression surgery on Tuesday, because it might help. The position we took on choosing to go ahead was that we either trust the doctor or we don't. If we trust them, then, after verifying his credentials and what not, we would let him go ahead with the surgery (they don't do brain surgery for cookies and grins). If we don't trust the doctor, it's time for a new doctor and see what they say. We trusted our neurosurgeon because for so long he said he really didn't want to do it. Yes he was a surgeon, yes surgery was his bread and butter, but he did not want to do anything surgical if there was hope that ANTHING else would work. If your doctors are saying this is a shot in the dark, but it is our last shot in the dark, and you trust them to care for your child as if it were their own, then go ahead. If not, ask more questions (what would you do if this was your own child? Is there anything else, however remote a chance we can try first?) and if you are not satified move on to someone else.

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hi Dr. Fuchs also did my surgery, hope to chat with you more later.Ward

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hi Dr, Fuchs did my surgery also will like to talk with you more thanks