Chiari Online Support Group

Newly Diagnosed - Does everyone have surgery?


#1

I was just diagnosed a week ago with Chiari I. I've had lyme disease for many years, and headaches are nothing new to me. My neck pain and headaches at the back of my head have been much worse recently after a water park ride with my son.

My doctor ordered an MRI, and it showed 4mm Chairi I. I work full time and function well (for now); I am grateful for this, but it doesn't seem to be the norm. The few people that I know of who were diagnosed with Chiari have all had surgery. Are there any who haven't? Is it possible to avoid surgery?

I've done so much research, but I'm overwhelmed! Does this get progressively worse or can it get better? How can I manage the neck pain and headaches? No OTC meds seem to help.

I appreciate any guidance!


#2

Txgirl09, I don’t know the answer to this but wanted you to know you are not alone. I am newly diagnosed and am trying to sort everything out as well. It can definitely be overwhelming but I am learning that my research is very much necessary, as I have had to be my strongest advocate and even educate my doctors. It is crazy.

I too seem to get the feeling that if you don’t do surgery, then you just stay medicated with no full relief from symptoms. I just want to feel better, not hurt, be able to think straight, and get my life back. I saw this Pinterest Post that said something similar to “you know it’s bad when brain surgery seems like a good idea.” I am soooo there! I don’t even care about possible complications anymore, I just want relief.

I hope you find some relief, answers, and help. You’ll be in my thoughts!

BTW, I am also a TX girl!


#3

I haven’t had the surgery yet, my neurologist earlier this year had said that I need to do regular MRI checks on size change. I will see Friday morning with family doctor to see if change in size. If so will have to go back to neurologist.


#4

I have not had surgery, been living with Chiari 5mm, Ehlers Danlos syndrome and Dysautonomia for awhile now. Not everyone is a good candidate for surgery. Some if us who also have ehlers danlos syndrome especially are poor candidates.
Educate yourself to be a better patient as well as making the right decisions for you.
Your doctors will do a lot of tests that need to be done before committed to surgery. To equip yourself with reading and doing a lot of research, watching some of the videos that are available over the Internet, and talking with others who are going through the same issues really help you.
There is a lot of information now more than when I was first diagnosed but remember the Internet is a very useful tool, but there are some stuff you will need to filter, so use the better informative well known sites.
Everyone is different and have different outcomes, if you and your doctor decide on surgery. Surgery is a treatment not a cure. I know a lot who have had surgery and some of them have excelled in feeling better, some have symptoms still, and some are no better or worse after surgery. Getting a neurosurgeon who have experience and has a good reputation. Recovery time for some is better than others.
Listed here are some really good ideas for dealing with pain and discomfort. Talking with your doctors, have your questions in hand, and if you do not understand their terms, ask the, to explain in term you can understand.
For me, some days are ok, some days I have a lot of joint pain from the Ehlers Danlos, other days that are hot, I try not to go out much, because of the Dysautonomia. Chiari headaches can be helped with sleeping, ice packs and medication.
Keeping your communications open with your doctors will also help. Support from your family and friends is much needed. We don’t look sick so most people think we are fine, as you know we can get pretty ill fast.
Good luck and please look up some of the helpful tips listed.


#5

The problem is that for many if not most, there is not a clear connection between the Chiari and the symptoms. For every person walking around with symptoms the are 4 with as large or larger chiari walking around with no symptoms.

The surgery was popularized by Chiari Centers, headache centers, and a few out and out crooks. Because the condition itself is NOT unusual, the chances of a headache patient having achiari are pretty good. Association is NOT causation. Some of the less scrupulous docs even started using a unproven test CineMRI) developed to measure cardiac flows to sell the surgery.

In the world of neurosurgery, chiari surgery is as the appendectomy is to general surgery. Simple quick and profitable. It was actually a surgery looking for a disease. Originally it was going to be a cure for Fibromyalgia.

That all being said there are times where the surgery is an absolute necessity. It’s usually a pediatric issue but certainly occurs in adults. Other than the headache quacks and a disgraced NY surgeon (once very popular here) fewer than 20% are surgical.

Incidentally as one of the most common neuro conditions Neurologists and Neurosurgeons are familiar with it. Because it is so rarely the problem, some tend to dismiss it too quickly a second opinion is always in order and tie breaker if it’s a split decision.

TJ


#6

Thank you all. Lots of good information here, and I truly appreciate it.

I’ve done tons of research on my own, but love hearing feedback from others in the same boat. Thanks again.


#7

Living with Chiari, Ehlers Danlos and Dysautonomia, you learn what each symptom and which illness it goes with.
Sometimes all three can hit at the same time. You are your own best judge for your treatment and that is why to learn as much as you can. Talking with others as well as having a good relationship with your neurologist or neurosurgeon. There are still so much to be learned from research and still a lot of unknowns, but one thing is for sure is the struggles and pain we endure. I have always said, if you don’t have it, then you can’t relate. You can read about it but, living with it is a different story. Each one of us deal differently. I have chosen to avoid surgery as long as I can, listen to my doctors, and don’t be afraid to ask questions. In my case I had my neurologist tell me he does not know, which is a very honest answer. May not be what we want to hear but I’d rather get an answer like that than some made up jabber.
Yes, there are some doctors out there who are after $, and that is why you should think through your decision of getting surgery, the cost factor, will insurance pay, doctors qualifications, recovery time and really educate yourself. No one except YOU are responsible for choices we make in life.
Having said that, yes I know of some really good outcomes after surgery, but remember surgery is a treatment not a cure. Some of us have no choice if we have a very large Chiari, or our quality of life is poor, syrinx or some other issues that are life threating.
To be a well informed patient is being educated in your health for decision making. Invest well in your health with being informed.


#8

There does seem to be a disconnect with doctors. One doctor would not even let me tilt my head back and this was an Ears, Nose, Throat doctor. My voice is all over the place and my mind is so scattered and I am still trying to teach 19 5-year olds. It is NOT working!


#9

This was before I had my MRI. I had a uncontrollable nose bleed this year, had to get the vein that was the bleeder burned and sealed. It took my husband daughter and er nurse to hold me down to pack my nose. One week later bleeder still was bleeding had to get a final burn and seal again, so know what your saying.
Note, I did not tilt my head back much for any of the procedures from ENT doctors. They used a reclining chair.
Much like your dental chair.
I was undiagnosed with Chiari for several years. My symptoms was bad ear pain and migraines. Meneres Disease was what they thought I had, doctors never ruled Meneres disease.


#10

My daughter is also a teacher. With all the noise you have in class, I can see it is hard for you to sleep it off. Do they still have nap time? Feel better soon.


#11

They haven’t had nap time in years. It is crazy what they want from them now. Even worse for teachers. I never catch up. I have substitute in morning to go to pain medication doctor. I already know I can’t do it any more.


#12

I truly know what your saying. Sleep for many of us is hard to come by. Bless you. Your doing the right thing going to pain management. Our genetic doctor was very helpful in suggesting a lot of things that me and my daughter suffer with. She too has Ehlers Danlos syndrome like me.
I surely know how important a good nights sleep to us.
Let us know how it is going. She had meet your teacher yesterday, and today decorating her classroom. She had trouble sleeping too but does not have Chiari that we are aware of.


#13

Abby I am glad to hear that I am not the only one with ear aches. I just thought that with my ears being prone to some degree of infection since I was a child. So now I am wondering if it has anything to do with Chiairi because it is in and off pain in left hear depending on the strength of the headache. And the headaches are constantly on the back and left side of my head
Just wondering if anyone else has same issue. But I also have issues with C2 of my spine. Anyone have have advice on how to try to get at least a decent night sleep without taking P Ain medications??


#14

Tazz
I think maybe we all have some kind of ear problems, I hear that quite a bit. I have lost hearing in the left ear.
I have degerative disc disease in my cervical neck, probably from the Ehlers Danlos. You said you had problems but did not specify.
We are different in a lot of ways, but similar in others.
When my Dysautonomia is acting up, all I want to do is sleep, but that is the only time I sleep well. Trying to find something that works well, but not yet. Let us know if you find a remedy.
Maybe you can oversleep in the morning???


#15

My issue is Chiairi type I plus I think the doctor says it’s stenosis on c2 in the neck. Now I know with the c2 there comes with some pain in the left jaw and down the left side of neck shoulder and arm. But unsure if the ear aches and infection is related to the Chiairi or the c2 problem or both.


#16

When you go to the dentist have they ever told you, you may have TMJ? Temporomandibular joint disorder. It is joint and muscle and a group of conditions that can cause a lot of discomfort and pain. Many of us suffer with TMJ. I don’t know either if ear infection goes with Chiari or not but I know that the ear pain and jaw pain can be related to Ehlers Danlos syndrome and some doctors have found a link between the EDS and Chiari. Disc problems and bone spurs can be very painful. You might want to discuss these issues with your doctor. We blame most of ou pain to chiari but there are more conditions that can cause problems for us too.
I hope things get better for you. Let us know about you.


#17

Over the years when I was starting with all this pain, one of the things I did was go to the dentist and he did a few x-rays on the jaws and found nothing. The ear specialist few years back, before I found out about Chiairi, had said that the left ear problems were similar to what they call swimmers ears problems. But will ask the doctor to check for ehlers Danlos. Thanks


#18

Not all is Chiari, know it’s hard to believe that we have more to us than Chiari, but sometimes it is necessary.
Google the Brighton criteria hypermobility syndrome.


#19

TXGIRL, My name is Jim and I was diagnosed with Chiari 3 years ago. My herniation is a whopping 2.2 cm. I have occasional headaches but strong ones when I breath hard during physical work. For example, if I am lifting heavy materials and hold my breath and dont breath, I get a massive headache that lasts about 15 to 20 seconds then it calms down. I went to a specialist in Camden NJ, close to Philly, and it he mentioned that if daily living becomes an issue then he would recommend surgery but at this point I can work, go to the gym, etc. When I get my headaches, over the counter medications help. Ask your specialist if you need stronger meds for pain, but just b careful you do not get addicted to the pain meds. Hope this helps.


#20

Great point Jim.
Glad your doing so well. I can live with some head aches, but the fatigue sometimes gets the best of me. The dysautomonia sometimes go along with Chiari. You might want to check out some Google sites on Dysautonomia. Before I was diagnosed I felt like I was smothering and not getting enough air. When my neurologists PA said what is your most bothersome symptom and I told her, she said she was sending me for a tilt table test. I sure enough had Vasagal syncope.
Sometimes we blame everything on Chiari, but I had to learn not everything is Chiari. You may hear your doctor say that is not a symptom of Chiari, or it could be something else. Don’t be afraid to ask what else could it be.
Thank you so much for your great post.