Surgery for C1 C2

My daughter has recently seen Dr. Durhani and within 10 minutes of meeting told her she needed spinal surgery. I'm still not 100% sure of what he plans to do. All I know
is that I'm not sure it's a great idea to fuse a 20 year olds spine. My daughters main complaint is debilitating headaches. Does anyone have experience with this surgery or Dr. Durhani. Any alternatives??

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Have you read the Driscoll Theory at Prettyill.com? Please do! Authored by a doctor, EDSer, and the mother of EDSers. Her name is Dr. Diana Driscoll. Please check it out. She has done some amazing research, and for many.... She has discovered alternative treatment that is simple an non-invasive. Please read it before you make any decisions about surgery! She has helped SO many people on this site. We love her! Please keep us posted!!!

Unhinged

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I would for sure get a second opinion. I am always leery of surgery as the first option.

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Hi Suebp, there is a Facebook group called EDS Neck Surgery Group. The administrator is Candace. It's a closed group so you have to send a message to Candace to ask if you can join...just tell her about your situation. I have received SO much information from the members there. Quite a few have already had neck fusion surgery and some have children who have had surgery. I'm not sure how many have had surgery from Durani, but I know there are some. I hope to meet you on that site!

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I would be curious to hear how you feel/what you think about Dr. Durani. Is this the same doctor out of Cincinnati? Dr. Neilson and Dr. Tinkle have referred me to him because of a report from my physical therapist. When she tries traction (pulling slightly on my head away from my body) my head goes numb and sometimes down to my toes. I actually find it pleasurable because it makes my whole body feel better - but the doctors don't seem to think it's in my best interest. Both the headache doctor that Dr. Neilson sent me to and this Dr. Durani want to see a cervical MRI done - and that is being scheduled, but I'm very leery myself about any invasive procedures being done on my neck/spine. I would like to get rid of my daily headaches though. By the way - I'm about 40 years old and have had the headaches since I was 14.

~Beth

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As a nurse with a long career (halted by EDS stuff) ~ the bulk of it in pediatrics with some other things like psychiatric nursing and home care nursing and some adult care as well - I always stand by parents in their 'gut feeling' as being almost unfailingly correct.

So without even commenting on particulars - if you are sort of anxious about this - enough to write here about your concerns I'd say trust yourself and that gut instinct and what it's telling you.

Then if I back up and try to comment on the particulars - I am very cautious with neck surgery as an approach for better function in life at any age. For starters - many things in the realm of neuro/neck and their radiculopathies will self-heal without doing a darn thing. Then if you add to that - some milder or alternative approaches a bit beyond doing nothing - some have shared that anecdotally themselves and their loved ones have been helped.... Then given a person's age - that too changes and different periods of the lifespan incur different challenges such as hormonal shifts and even just plain growing to full maturity size. These factors can also influence or effect symptoms.

Once you have a neck surgery - bets are it that it won't be the only one in a lifetime. Having a limited range of motion of your head is not desirable but with these fusion surgeries things that were simple like driving a car - can now be challenging - having to shift and move your entire upper torso to look in the direction at a young age is something to factor in as it could be an end result.

You've undoubtedly heard too that the additional and new movements the body needs to learn - and additionally any joints adjacent to the fused area take the load and with their motion increased - the situation I've read is a set up for those areas also getting fused in the future... Once a spine takes the trauma of a surgery - the game is never over so to speak.

Then it's important to factor in the real possibility of a less than desired outcome.... this is not to totally deter you from surgery if it's absolutely necesssary... but it doesn't take much reading on the internet forums like Spine Universe for one - to read of people truly regretting they ever had the surgery done. Their issue not fixed and worse - new pain that doesn't go away - as nerves are tricky at times.

Within ten minutes a surgeon decides surgery is something to be wary of. This is their approach to healing hurting humanity - a different discipline will push their agenda - its' just the nature of things - they eek out a living on cutting - others by other means - not a put down but just a fact --- you need to proceed very cautiously ---

The good news is that it seems you have plenty of time for second opinions. I don't know where you live - but the doctors at Mayo Clinic are salaried so that the push to do surgery is a bit more grounded I believe. A surgeon still loves to do surgery - but the push or pressure is less if it isn't dollar motivated.

In my very particular situation an EDS neurosurgeon finds surgery of the neck the best option to help my symptoms but Mayo finds it unneccesary - both wish to help me.... and as I have two completely different approaches offered - one do nothing or explore other options vs. surgery for a 3 level fusion... well I'm playing the waiting game. If and when things become so bad that I'm wheelchair bound - I'll ask for a repeat of evaluations - and I may get yet a third opinion. It baffles me how very brilliant people can be so opposed to each others 'obvious' conclusions...

There are many reasons for headaches (as I'm sure you know) - one that was explained in my case was a mild sleep apnea condition - which isn't too worrisome - but the bad part that gave headaches I was told was the Oxygen Saturation levels dipping to 70% which should be about 100%... Another possibility given was blood sugar and blood pressure issues... And then again I do have that gnarly neck MRI series that could be contributory I suppose.

Hope this helps you to be able to slow way down and take your time even if it's numerous opinions you get. You cannot replace a neck - as you can a hip or knee or shoulder... so any time getting informed up front will be worth it's weight in gold in the end. Writing down all your questions - seeking out other opinions - asking about failure rates - pain experiences in EDS patients - who will provide post op pain control and for how long? How many have they done on EDS patients - how long do they typically hold in hypermobile patients - you sometimes have to be blunt, succinct and in their face ... if you don't get the answers that bring you that peace inside - keep going...

Blessings to you and your family

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Beth, I'm 43 and have had chronic headaches since I was 23. I've been on social security disability for six years now because my headaches are truly debilitating. I'm seeing Drs Francomano and Henderson the first week of June...traveling all the way from Tucson, Arizona. From what I've read online and the Facebook Neck Surgery Group, fusion isn't necessarily the answer for headaches. Some people who have had fusion are worse, some are the same and some are better. Like you, I feel better when my head is lifted off my body. I would give anything to have that type of relief full time. Fusion somewhat mimics this type of action; however, once you are fused, your neck muscles still have to work, but in a different way. Also, the pain could move to a different location on the spine. I've discovered this on my own with using braces, i.e.. I brace my wrist but then my elbow hurts. I brace my elbow but then my shoulder hurts and so on.

If surgery is recommended for me I will consider it as I have other neurological problems that I might benefit from. My 17 year old daughter had her lumbar and thoracic spine fused last summer (T9-L3) from progressive scoliosis. She really didn't have the option; it was either do the surgery now while you're young and healthy, or do it later when your curve is worse and you won't bounce back as fast. She's not that happy with how her body feels after the fusion. So, I've had a little sneak-peek on how fusion works, even though the neck is quite different.

Getting fusion would be, in my opinion, the end of the line in terms of choices for potential headache relief. I've tried everything else except for an occipital ablation and a C2 C3 stimulator implant. I've asked for a pain pump, but those aren't possible for neck pain and headaches because the leads retract. I think that choosing fusion is a leap of faith for those whose quality of life is very poor, like mine. There really isn't a concrete answer or promise of relief.

Regarding Dr. Diana, she is truly wonderful and has great suggestions for testing and treatment. She recommends Diamox for headaches. I've asked three of my doctors to prescribe it to me and, collectively, we've tabled it for now. Diamox reduces your brain fluid, which if you have excess brain fluid, would be a good thing. However, if you don't definitively have excess brain fluid, you would create a deficit, making the headaches potentially worse. Brain fluid could take up to a month to "refill" itself. So, I'm waiting to see if Dr. Henderson will order tests regarding brain fluid flow, amount, etc.

I feel for all of us, chronic headaches are miserable. Big hugs.

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Great post by Dessert1st! She said everything I was going to caution you about.

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Thanks so much to all who have responded. I truly appreciate your words of support and kindness. One thing I didn't mention is that while my daughters headaches are dibilitating, the pain is secondary to the soreness in her neck from holding her head up all day. Is this common as well?

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Yes, it is. It's my understanding that we develop tight bands of muscles to support our body parts. These muscles spasm and strain as they are being asked to do something they weren't intended to do. So, in your daughter's case, are her shoulders tight too? When I first started my journey, I was told I had tension headaches because my muscles in my neck and shoulders were so tight. This; however, is ridiculous, because my muscles were always tight no matter what the circumstances (vacations, lounging and even sleeping!) The headaches can be caused by many things, but if you have cervical instability, the occipital nerve roots get trapped in the tight muscle bands in C2 and C3 causing pain at the base of the skull radiating forward to behind the eyes. This type of pain can also be caused by Chiari Malformation so that has to be explored too.

Please keep us posted on your daughter's situation. As I mentioned, I was fresh out of college when my headaches started in 1992 and they never left. You are leap years ahead by already seeing Dr. Durani.

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I just had a c1 c2 fusion in December from Durrani. I feel GREAT. No more headaches at all. He did a wonderful job, I am also on th closed neck surgery group. There is an abundance of info. You need to get on, it was wonderful to know that there were people I could turn to. I am so glad I had the fusion. Let me know if you have any questions for me, about surgery or Durrani.

Erin

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How do you get into the closed group - I have a friend with a child with chiari that is exploring surgery. I know it would benefit her.

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Message me.

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Please get a second opinion. Your concerns are valid. Are you in Cinci? I was told pre-surgery that no one else could render a valid opinion. Turns out, that isn't true. Best wishes to your family.

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Do you have someone in Cincinnati who is experienced as Durani?

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I got a second opinion after Durrani and the Cincinnati neurosurgeon I went to had never seen a 3d ct scan. This is what Durrani and Henderson use to back up there opinions. Mine was easy though, bend over, pass out. Not fun! The dr also could not pronounce eds. Not that pronunciation matters next to their surgical skill but, it sure made me nervous. This surgeon is affiliated with the largest neurosurgery group in the area, so I will agree that 2 nd opinions are needed but, that you should be seen by someone familiar with EDS and with EDS surgeries. Good luck.

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Other vary experienced doctors in Cinci will give you opinions. Dr. Bohinski, a neurosurgeon, treats people with EDS and Chiari. Please, see ANYONE for another opinion! I wish I had this to do again. I learned a lot of things from this surgery, first and foremost that just because someone says things with great authority, it doesn't make it true.

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Has anyone had experience with prolotherapy?

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I recently found out that I have C1-C2 instability and am contemplating prolotherapy on my neck to stabilize it. I have already had prolotherapy done on both of my ankles and it has really helped. I wouldn't jump into surgery, especially on the neck.

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yes and no. Had prolotherapy on my ankle many years ago and did get some temporary return of stability. I had almost all joints then "treated" by a quack doctor(because my first doctor said she didn't have enough experience to do the back/ neck) ..to include TMJ, cocyx, neck area. In my heart of hearts this second experience (multi joint) worsened my condition but I do not believe this quack doctor was administering prolotherapy in the manner in which it was intended. I would like to re visit prolotherapy before moving to surgery. My neck problems started causing debility in 1995. I am in Central FL and there are a couple osteopaths "learning" prolo, the quack doctor on the FL West coast. Those who have had success with Prolo, what state are you in and would you recommend your doctor? My understanding of prolotherapy was a good model: A Physical therapist (typically a manually certified one) would stress test the ligaments to determine which specific ligament/s failing, then the doc would inject the solution into said identified ligament. Thus a team approach. That is not at all what I received in FL. Also, there is much discussion about different mixtures of what substances are injected from sugar water to lidocaine, etc. The model I learned of prolotherapy under I have yet to find. I beleive it came out of Michigan, Washington state areas but this was back probably 6-7 years ago. Has anyone had PROLO on their NECK successfully? I'm pretty nervous about people not experienced with EDS poking around in the neck. I would hope it would be limited to very few injections per treatment (not my experience though :( ) I don't mind needles, but when you have global pain and then a bunch of needles added, my nervous system got in one bad pain frenzy for a very long time. Again, I'm sure if done properly, this would be good albeit temporary tool. My treatments were very $$$$$ also. To my knowledge there is no standard of care for prolotherapy and while the mere injection of the needle alone theoretically causes scarring and the type of solution mattering is debatable, I hope the powers that be can find an effective and more standardized manner of delivering this modality.

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I went to Dr. Ivica Ducic (Plastic Surgery) and Dr. Maureen Moriarity (Neurology Nurse Practitioner) for follow up. Dr. Ducic excises three nerves for occipital neuralgia and has another surgery of decompression. The surgery is very simple and superficial. You recover from it right away. Please google them and make an appointment. I also was prescribed Myofacial Release Therapy that took care of the headache in one day and made me so sleepy for three days. Dr. Moriarity set me up with this.
Mei Mei

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