Is surgery recommended with only exertional headaches as symptoms?

Hi Everyone,

I had a neuro surgeon appointment on Jan 23rd 2014. I have a 20 mm herniation which seems to have increased since the MRI we took 2 yrs back (about 12 mm). My symptoms are stabbing headaches while laughing which gets worse when combined with physical exertion like dancing or some sport. Some amount of whooshing sound in the mornings. 2 months back my Neurologist recommended diamox and the headches got better in terms of intensity. The neurosurgeon we met recommended surgery but I always thought of surgery as a last option. I was wondering about if I can wait till the point where I develop more symptoms other than headaches and which are not yet neurological and then go for the surgery? The doctor seems to believe that these symptoms sometimes progress rapidly and he recommends surgery sooner the better. He also did not rule out the chance that the symptoms might not progress any further and I might not need surgery for the next 10 - 15 years also. I am 30 yr old now and I am very confused if going for a surgery is a right choice for me now or just wait and monitor the herniation closely by taking regular MRI scans? I am worried about the 1% chance of any surgical failures and having to go back to surgery again and another 5% chances of any csf leaks etc that can result as a side effect of surgery. I am looking forward to hear any suggestions from this group. Any advise from your experience can be very valuable to me at this moment.

I am also planning to consult another NS for a second opinion. We live in NJ and are looking for any good NS suggestions in the Tristate area. I have seen wonderful recommendations about the chiari institute and I will try my best to get an appointment from CI. I will post another thread for suggestions about recommended dosctors

Thank you

Krishna

Hello Krishna,

You are in a good place and I am sure this forum will provide you with some helpful insights. I am sure you know that our condition is asymptomatic and our level of herniation is as individual to us as our symptoms. Having fears and anxiety about a possible impending surgery is normal. Your concerns are valid and there are complications associated with surgery of any kind. You are educating yourself and thus going about your journey with knowledge; you are already leaps and bounds ahead of multitudes that came before you. I think getting several medical opinions is the right action plan. Certainly, consider your NS medical opinion when making your decision to have or not to have surgery, but I would not let one medical opinion be the the determining factor. I too believe that brain surgery should be a final consideration and only after careful deliberations. Your post paints you as young and active, I hope your condition improves and this lifestyle endures. I am glad to hear you found some relief for the head pain.

Best wishes

Dennis

Thank you for your insight on this Dennis. You have been very helpful :).

The main thing in making a discision is choosing the right NS,one who has and does many decompressions each year.It is surprising you are not haveing headaches lots more with a 20mm herniation,only you will know when you have tolerated all you can endure.I had a borderline chiari but so many symptoms for so very long the herniation was not bad but the symptoms were life altering,there’s a lot to be concidered.The chiari 0 is a rather new concept but the herniation has been the measure for a long time in some cases,such as mine,the symptoms spoke much louder than herniation.The surgeon is the decision that matters more than anything else,my journey was 28yrs.because I couldn’t find the right Dr.of any kind,there were many!Good luck in your search for a chiari SPECIALLIST you are fortunate to live near the Chiari Institute.

Here are two in Manhattan: Mark Souweidane and Saadi Ghatan. The first is at New York Presbyterian and the second is at St. Luke's Roosevelt. My son will be having decompression surgery in 2 weeks with Mark Souweidane.

Krishna, yes, symptoms can absolutely progress very quickly with out warning. But…if you don’t have a syrinx or sleep apnea and no major neuro deficits then I don’t think you would necessarily need to hurry into surgery- unless you are being advised to do so by an NS. But I think you should have an NS that you trust lined up in case you’re situation changes quickly. An advantage of having time with your situation is that you can find the best NS, plan the best time to take off work, choose the best insurance plan, and get acquainted with the other conditions that tag along with Chiari. I second choice to see TCI because they have a reputation for screening for EDS and cranial cervical instability while they asses your Chiari. Also, different NS have different track records as far as infections and CSF leaks with decompression surgeries.

Jenn

We put the same question to our Ns… My wife’s primary symptoms being headaches that she can manage… And often dizzy / poor balance.

He said, “if it was me… I wouldn’t have such a major surgery for symptoms you are able to manage for the most part without medication”

Krishna,

I'm in a similar boat. I have a 15mm herniation and either pseudotumor cerebri or hydrocephalus (doctors argue on that one), and while I have symptoms that can be very severe the worst symptoms come from strain and exertion. I have been trying to figure things out for years, but have never gotten a straight answer from a doctor, and live far from true Chiari specialists. I have an appointment Friday with a new neurosurgeon, the best I can get with my insurance, so it will be interesting to see if he agrees with my previous neurosurgeon who wanted me to get a shunt at the very least. It's a scary thought, and I often wonder what the best option is myself. I tend to agree with everyone who says the doctor makes the difference. I've never been to a neurosurgeon who gave me the confidence that they really knew what they were doing with me, and could positively change my life, so I waiver. Keep us all updated on what you decide!

XOXO

Danie

For me its a matter of how you feel but at 20mm I would seriously consider the worst. Say auto accident or such… is it worth the risk to not treat? Weigh all your senarios very carefully. It is your cognition and mobility at risk.

I recommend Dr. Rekate at The Chiari Institute on long Isand. NJ is close and they are one of the best !

If your CSF flow is blocked or poor then yes regardless of the size of the Chiari they do recommend surgery because of the dangers of not having CSF flow.

I have a friend that just got diagnosed with a 5 mm Chiari on each side and she has blocked csf on both sides and some symptoms but the doctors are very concerned about her if she doesnt have surgery.

I pray you find your answers and peace. Bless you.

@Lynn Messer: Thank you for your suggestion. I hope I will get an appoinment in TCI soon. I read from your profile that you have been considering surgery as an option. Hope you will find relief soon.

@Tama: All the very best for your son's surgery. Please keep us posted. Thank you for the references. I will check them.

@jcdemar: My NS recommended surgery. I have some pain in the upper part of the spine. I have MRI's of the spine schedules this saturday. I will get more information then. I really see a point in what you say about how I can use this time to plan better for the surgery. Thank you for your suggestion.

@Maxpower: That's my predicament too. Reading about how this is a major surgery and how it changes life, I am not sure of the right thing to do. Also read that surgery is a treatment and not a cure. With 20mm herniation though I am also worried about any emergencies which may arise.

@Danie: I am sorry to know that you do not have any true Chiari specialist in close proximity. I am slowly trying to accept that I might need to undergo surgery. But would like to get a second opinion before deciding on it. I will keep you all informed about my experience. Good luck with your search.

@pebbles: I do agree with you on this. I want to avoid any neurological sysmptoms at any cost.

@theodore45: Thank you for the recommendation. I did read about Dr.Rekate from TCI. I will try for an appointment.

@Jozy: I had a cineflow mri and in normal position it doesnt show any CSF blockage. But there could be a blockage in certain positions when I exert myself and thats when I feel the increase in pressure in my head and the stabbing headaches. Thank you for your kind words. I hope you and your friend find some relief soon.

Thank you all again, this has been a very supportive group and I value all your suggestions.

I have the same minimal symptoms as well and debated surgery this summer. I am 37 so don't want to wait too long but was just diagnosed last summer. Symptoms didn't pop up till an auto accident. After a few months of pure h#ll the symptoms are off and on now. Dr supported waiting but since I do have blockage (two actually) I am going to go ahead with it. The older you get the harder to recover from surgery. Good luck with the decision, Sylvia

Hi Cristine, hope you are recovering well.

Hi Sylvia, all the very best for your surgery.

Other than stabbing exertional headaches and whooshing sounds, I have some soreness in the spine in the upper back espl when I sit in front of the computer for long times. It could be because of wrong posture too. I have my spine mri scheduled this saturday. I will get more information if the upper back pain is related to Chiari. Yes other than these currently I do not have other symptoms. But the only dilemma is my NS and neurologist both recommed surgery to avoid any complications that may occur in future due to the length of the herniation. Also they feel the sooner I get it done the sooner I will recover. On the other hand, I am worried if I will be making my situation worse than now by opting for surgery (as I am comfortably able to manage my symptoms so far). It seems like a tough decision to make. I am waiting to get a second opinion.

I had surgery on Tuesday. The dr said I was much more crowded that he thought I would be. My CINE Mrs showed very restricted flow
My only real symptom was exertional headaches. It’s too early to see if it helped or not, my dr seems pretty confident it will.
hope this helps!
Hayley

Hi Krishna. I’m new to this forum but not new to Chiari. As far as surgery is concerned, it’s not the length of the herniation that is the problem, it’s the width. If the herniation is too wide, it’s blocks the CSF flow to the brain and causes all the symptoms. They find this through a CINE MRI. I would ask about any obstruction in the CSF flow. If it’s obstructed, surgery is the only option.

Hope this helps.

I will say that the attitude that so many NSs and Neuros.have is that the herniation is the measure for dx.In my own case there has been a long and life altering ordeal,if it was not by my own rreasearch and my searching out a NS that is a specialist.I would still be hurting with no way out.If there was only some way to get this information to reg.neuros.but it seems they are not interested,their education on chiari must be pretty limited.It seems that the chiari 0 theory might be catching on in the specialist circles but not at all with any other Neuros.My suffering and many others suffering is due to dx by herniation and I know from personal experience that how this causes so much harm and Dr.s take a oath to patients not to do harm,without meaning to they are and do cause a lot of harm to us.I had decompression 15+ months ago and it has been a good improvement,but still there is dysautonomia that is not an unusual problem.If I was dealing with someone who is not a specialist I would get no help with this either.I have an appointment for a CT scan to look for cerebral fluid buildup just hopeing it will not come to a tap to relieve pressure,symptoms are hard right now but this is part of chiari because chiari has no cure only treatment some people get better results than others but the condition is still present.Please remember me in your prayers,if you pray,hope these symptoms can be treated and things will get better.I have unloaded on everyone,hope you all don’t mind,thanks to you on this site for a place to go it means so very much.

Hi Krishna,

Hope you are good! How did you finally decide? I am in the same boat regarding whether to even consider surgery or not.any feedback would be great at this point.

Tc,
Deepa

Dr. Frim briefly discussed his thoughts on surgery with me last week regarding my daughter. His absolute must do surgery requirements were central sleep apnea on sleep study or aspiration on swallowing study, drop attacks or syrinx. After that he said it comes down to decision about quality of life. We didn’t discuss it more than that since we are going to address my daughters CSF leak and then reevaluate her Chiari symptoms.

That sounds like a smart plan. Bless you both!