Is there an end all be all cure?

Can this be cured? Im so scared of surgery but Im sure thats what Im looking at. I found a surgeon in WI about 2.5 hours from me....from the help of a member on here. Im going to call tomorrow and see if my insurance is accepted there. Fingers crossed! x

I’m scheduled for surgery in the morning, over the last 2 days everything’s been squared up, paperwork, bloodwork and such to prepare, and it’s really happening. Honestly I’m terrified, but ready at the same time. And I’ve not suffered with this or had as much pain for as long as some on here have. Good luck with your pursuit of a surgeon :slight_smile:

It's cured if you get as much taken out as you need taken out. That varies for everyone. But there's a very good chance you'll be cured.

I feel like my son is cured. He did have to do both sides and they won't do them at the same time so it was 2 separate surgeries. He is not the only one. I have read of others who were cured too - some on this site and some on another site.

and no meds anymore!!! My son needed Tylenol 1 time post surgery and that was it. Now he is using ibuprofen today for some swelling in his neck.

Please let us know how your doing after the surgery, I wish you best of luck~



Redirish98 said:

I'm scheduled for surgery in the morning, over the last 2 days everything's been squared up, paperwork, bloodwork and such to prepare, and it's really happening. Honestly I'm terrified, but ready at the same time. And I've not suffered with this or had as much pain for as long as some on here have. Good luck with your pursuit of a surgeon :)

How exciting! Keep us posted. Will be thinking of you. xo

Redirish98 said:

I'm scheduled for surgery in the morning, over the last 2 days everything's been squared up, paperwork, bloodwork and such to prepare, and it's really happening. Honestly I'm terrified, but ready at the same time. And I've not suffered with this or had as much pain for as long as some on here have. Good luck with your pursuit of a surgeon :)

I will be thinking you!! Best wishes...keep us posted as you are able!!!

Redirish98 said:

I'm scheduled for surgery in the morning, over the last 2 days everything's been squared up, paperwork, bloodwork and such to prepare, and it's really happening. Honestly I'm terrified, but ready at the same time. And I've not suffered with this or had as much pain for as long as some on here have. Good luck with your pursuit of a surgeon :)

Lisa,

I too am scheduled for surgery. It is on the 9th. Redirish and I are going to kind of keep each other updated along the way. Maybe this will be helpful for you. I wish you luck on finding a good surgeon!!

Good luck!! Will be thinking of you too! Are you guys having just 1 side done at a time? Are they removing all of it or only a certain length? Did the doc say they think it could grow back? Sorry for so many Qs :/

krista3 said:

Lisa,

I too am scheduled for surgery. It is on the 9th. Redirish and I are going to kind of keep each other updated along the way. Maybe this will be helpful for you. I wish you luck on finding a good surgeon!!

Lisa…who is the doc in Wisconsin? I’m in Michigan and there are zero who treat ES here.

The one thing that happened to me is there were variable side effects that I was not told. The last 10 yrs I have researched and found out that many people suffer post op symptoms. Some of the lucky ones are completely cured. Hope your doctor has done many of these. I had one doc pretend he did it. He went in orally went he needed to go externally. My bone was to long.


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Ivy said:

Lisa....who is the doc in Wisconsin? I'm in Michigan and there are zero who treat ES here.

You had yours out 10 yrs ago?? Has it grown back and is causing you more problems?

dnurs4u said:

The one thing that happened to me is there were variable side effects that I was not told. The last 10 yrs I have researched and found out that many people suffer post op symptoms. Some of the lucky ones are completely cured. Hope your doctor has done many of these. I had one doc pretend he did it. He went in orally went he needed to go externally. My bone was to long.

Hi Lisa,

How're you doing? Is your insurance sorted, and are you going to go ahead with surgery?

It's hard to make a decision , I know, but sometimes if they're left too late, there can be so much nerve damage that a complete recovery isn't possible. Sometimes they can grow back, but not always. Good luck with your decision!


Yeah Im debating but really thinking surgery is in my future. Im so scared of it tho. :( Ugh they can grow back!? WHY!? :( I dont want to have it come back. I wish I knew why we have these. Is it cuz our D was low? Is it cuz we took Vit D to bring up our levels? I read D can cause calcifications. I wish we all knew so we could prevent it
Jules said:

Hi Lisa,

How're you doing? Is your insurance sorted, and are you going to go ahead with surgery?

It's hard to make a decision , I know, but sometimes if they're left too late, there can be so much nerve damage that a complete recovery isn't possible. Sometimes they can grow back, but not always. Good luck with your decision!

Hi Lisa,

Did you have the surgery? I also live in Wisconsin, can you please give me the name/hospital you found that knows about this? If you had the surgery, how are you doing?

As far an insurance, if you didn't know already...Often if YOUR Hmo facility can't provide the operation you need your doctor can put through paperwork to get you accepted somewhere else. I have had to do that a couple of times. Then you pay what you would have paid under your insurance with your HMO.

It is interesting that you mention vitamin D. What have you learned about that? I was Vitamin D deficient for years and have been supplementing in high doses. The last time we checked my levels were at 62 and my pain was reduced,...but Dr. did a 24 hour urine calcium test and I had quite a bit of calcium in my urine, so now I wonder if I've been hurting instead of helping myself.

It gets confusing sometimes doesn't it?

Where do you live in Wisconsin? I am in the Southern part so could go to Madison doctors unless they don't do this surgery. I had a great brain surgeon for my MVD surgery for trigeminal neuralgia in 2013 but now wondering if it was really trigeminal all along or not, or both.

Hope, if your calcium is high, the body shuts back on the vitamin D. To increase the D before checking the Calcium level is a bit sloppy. Sometimes our D3 is just low. Other times it could be low because we have high calcium levels. Control the calcium and the D3 will take care of itself. Too much calcium leads to things like kidney stones and calcification in the soft tissues and arteries. I am not a doctor but have wondered the same thing so I did some research

FYI High calcium, low vitamin D, are also linked to Eagles, but not directly. Please get checked out for Primary Hyper Parathyroid, I did not say thyroid, I said hyperparathyroid. 4 glands behind your thyroid that regulate calcium. There is a link Hyperparathyroidism is rare but not as rare as Eagles.

I was diagnosed with hyperparathyroidism and Thyroid cancer at the same time and I had the lump Eagles for years but did not worry about it. I ran to the ENT and asked him what the lump was. I had been going to him for sore throats for months before and he could not find any thing wrong. I should have asked about the lump.

Others with Eagles or thyroid disease or parathyroid tumors seem to have some of the same issues. Eagles being the most rare of the connection. check out www.parathyroid.com . The website is arrogant but the doctor is an expert and just a little arrogant. Also check facebook for parathyroid awareness, though the parathyroid.com website is the official expert website.

High calcium if it is from a tumor cannot be resolved with Vitamin D and can make you very sick. Any doctor who can operate on Eagles ought to know about primary hyperparathyroidism, but make sure you find a surgeon who operates on this pretty often, check out the website thouroughly and see if any of this applies to you with the high calcium.