1. < Spine Health

I am reaching out to those with DISH

Posted by blondie46 @blondie46, Jun 30, 2023

I have recently been diagnosed with DISH and I see that an old discussion was active at one time, but I would like to talk to those who have been living with this disease for a few years and find out how you are doing. My diagnosis was just recently, but when my doctor emailed me about the results of my test for something else, he sent me the symptoms of DISH and it was an instant "OMG" so this is what I have been living with for 20 years and no one told me what it was. 20 years wondering what it was that caused my voice to instantly change, why I can not sing anymore, why my throat hurt, why I would wake up in the middle of the night because I could not swallow. I have tendons and ligaments that have turned to bone and osteoarthritis/ rheumatoid arthritis all through my body and now I find out about DIME, A whole new set of problems with my neck and spine. It is not a fun life, but a painful one.

How are any of you living with your diagnosis?

Interested in more discussions like this? Go to the Spine Health Support Group.

rwhite44 | @rwhite44 | Jan 8 11:52pm
In reply to @rnlorena "@rwhite44 I have a question for you. What caused you to have fusions done in your..." + (show)
@rnlorena

@rwhite44 I have a question for you. What caused you to have fusions done in your neck? Did you have any pressure in the lower part of your head or any issues in the neck. I am curious because I get a certain pressure in the lower back part of my head. I do have stenosis in my neck but between a surgeon and a radiologist the two have different opinions on how much stenosis I do have. It is quite frustrating really. @rnlorena

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I have a degenerative disc disease and was unaware.
Played contact sports in my youth (football, lacrosse, hockey, streetball, skateboarding, etc) so had a little pain in the neck from time to time, but thought it was wear and tear.

When I was working at age 30, I had a few hundred pounds of product on a dolly, pulled it towards myself, turned it, and pushed off and had the most excruciating pain in my neck.
Thought I had pinched a nerve or something and after a few days of not getting better, sought a diagnosis.

After telling me about the degenerative disc disease, and that at 30, imaging showed the spine of a 50 - 60 year old.
I opted for a conservative course of physical therapy as intrusive procedures on my spine terrified me.

18 months of PT. INTENSE PT, thinking if I just work hard enough it'll get better, but it kept worsening.

They finally did a Myelogram and Discogram and discovered how bad things really were.
I was 3mm from collapsing my spine at 3 levels and being paralyzed.
The 3 days I had to wait for a surgery were the longest scariest days.

I would inquire about more specific diagnostic testing with a spinal specialist that's not wholly focused on surgical outcomes.

Fusion causes additional stress above and below the fusion, and after a number of years, you just have a new problem to deal with.

Hope you get a clear diagnosis locked in. It would sure help make better quality of life decisions.

Nerve stimulator units have been helpful to a degree with my extreme pain, but not sure that's an option for you, and they of course have their own baggage...

Best of luck, and please feel free to reach out with any more questions.

Oh, and just for info's sake, my fusion hardware was all done on the front of my neck.
So my information is based on that, don't want to waste any of your time if that info isn't helpful.

Best of luck with better health in '25.

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tallyteresa | @tallyteresa | Jan 9 11:17pm
In reply to @rwhite44 "I'm sorry, did you say your sister cannot be anesthetised due to cervical fusion? Is her..." + (show)
@rwhite44

I'm sorry, did you say your sister cannot be anesthetised due to cervical fusion?
Is her entire cervical region fused? Sorry if that's intrusive, I only ask as I'm regularly anesthetised and 4 levels of my cervical spine are fused, C 3-4, through C 6-7.
Had my first 3 fusions in about '02-'03, and they are anterior, had the 4th in '18 -'19.
Have been under a few times since then.

Just wanted to know if that was on the horizon for me if I have to have more fusions in the neck.

Hope your sister is doing better.
Spinal issues are hell on those who have them, and the fallout for the people who love them is brutal.
Thanks for being there for her.
Dealing with pain like that is always better when you have support.
You're a good brother, and apparently person.

Have a great '25.

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Hi
Dont normally come on Connect, but saw DISH and thought I would peek as someone who was diagnosed with it myself 3 years ago. I have had 4 cervical spine fusions now, 2 3 years ago and 2 more about 3 months ago. My neurosurgeon at Mayo Clinic expects to clear me for a different surgery in a couple of weeks at a follow up appt. The 2 surgeons involved in the next one(s) are disagreeing about timing. Incisional hernia guy is good to go with the neurosurgeon's recommendation; another who has to do something else in the same area that can and would normally be done at the same time is saying he wants me 6 months out from the most recent fusions. How long did you have to wait post fusions to be put under please? They each tell me they want to be sure enough healing has taken place for the spine to be stable to intubate me, but none of said it will be a problem nor has the neurosurgeon suggested that if I have to have more fused that I could not be put under, but will confirm that. Both times I have had the fusion surgery, he has removed osteophytes though they dont like to because they grow back. But one was so large, it was making it hard to swallow and I was losing my voice.

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1 reply
rwhite44 | @rwhite44 | Jan 10 1:57am
In reply to @tallyteresa "Hi Dont normally come on Connect, but saw DISH and thought I would peek as someone..." + (show)
@tallyteresa

Hi
Dont normally come on Connect, but saw DISH and thought I would peek as someone who was diagnosed with it myself 3 years ago. I have had 4 cervical spine fusions now, 2 3 years ago and 2 more about 3 months ago. My neurosurgeon at Mayo Clinic expects to clear me for a different surgery in a couple of weeks at a follow up appt. The 2 surgeons involved in the next one(s) are disagreeing about timing. Incisional hernia guy is good to go with the neurosurgeon's recommendation; another who has to do something else in the same area that can and would normally be done at the same time is saying he wants me 6 months out from the most recent fusions. How long did you have to wait post fusions to be put under please? They each tell me they want to be sure enough healing has taken place for the spine to be stable to intubate me, but none of said it will be a problem nor has the neurosurgeon suggested that if I have to have more fused that I could not be put under, but will confirm that. Both times I have had the fusion surgery, he has removed osteophytes though they dont like to because they grow back. But one was so large, it was making it hard to swallow and I was losing my voice.

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I'm so sorry to hear about your condition.
Unfortunately, the quickest time between a fusion (my 4th level, with a laminectomy) and being put under with a full tube situation was about a year.

And the surgery that had the anesthesia a year after my last fusion was a nerve stimulator implant, so not a terribly long complicated procedure.

The biggest issue, I find, is differing opinions between different branches of medicine on when it's OK and when you should wait.
I try to tell myself they are erring on the side of caution, but when you are the one needing treatments and surgeries, you do tend to be a bit less patient.

Best of luck. I sincerely hope you get some relief, and some piece of mind, as anesthesia could be a big something down the road.
Best of health in '25!

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