I am reaching out to those with DISH

I’ve found heat, hydration and exercise can mitigate the majority of my pain. Electric heating pads in bed and sitting.

I don’t know for sure that dish is causing any issue, but I have to have a root canal and he said that the tooth pulp was filled with calcifications. So I don’t know if it comes from that or the fact that I’ve also had hyperparathyroidism and have had a parathyroid removed. Also, I see that people with higher uric acid levels, which is not unheard of for people with dish, at increased risk of calcifications in teeth. Just thought I’d ask.

I thought I replied to this last night, but I guess I did not send it.
I have to have a root canal and I was sent to an endodontist. He explained that the pulpy area of my tooth was blocked by all these calcium deposits. So I also read that this could happen if you have several different conditions, and two of which I may have, I’ve already had one parathyroid removed because of parathyroid disease and that is an increased risk of doing this to a tooth. I also have elevated uric acid levels which can increase the calcifications. But elevated uric acid levels are also seen in dish patients.
So that’s what made me think about it, but I can’t find anything much published other than a support group that has mentioned that it can affect your teeth. Just thought I would ask.🙏

@dishpain I wanted to mention issues that can happen with parathyroid disease and bone density. My elderly mom has had osteoporosis for years and it became severe. She had a high blood calcium level because parathyroids were pulling calcium out of her bones and she did have 2 parathyroid glands removed. She has had osteoporosis related fractures. Have your doctors discussed bone density with you?
Jennifer

Hi Jennifer. Thank you for commenting. I am watched very carefully because of all my conditions. I get bloodwork every three months and I do have routine bone density. So far since the one parathyroid was removed in 2019, my calcium has been under control and parathyroid hormone Has also been in normal range. I am also in healthcare and for myself, and try to make sure I watch out for things. I do so appreciate you pointing this out not only to me, but to everybody else who reads these posts. 🙏

I was diagnosed with DISH in 2018. My initial symptoms were stiffness throughout my body . I gradually began losing some range of motion in my neck, and developed bouts of dysphagia. I was hospitalized, unable to swallow for 15 days ,and doctors decided I needed surgery, however when they came in to talk about the surgery, I was able to swallow, and was discharged the following morning. I have had stalled swallowing difficulties, lost range of motion in my neck, and a curve in my spine, and chronic low back pain . The only medical treatment I received was steroid injections, which were actually helpful in providing some pain relief. I have just dealt with the pain throughout the years. I am now 71 yo . Still drive, enjoy water aerobics, enjoy my family, and able to function well with the activities of daily living. This has been my journey !

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.

@rwhite44
Nothing is intrusive. My sister needed to have an endoscopy and they wouldn't do it because of her neck. She is now totally fused and stiff. If she needed to have anything done they could not do it. If they put a breathing tube down they have to be able to move your head to accommodate that tube. It would depend on how they would anesthetize you.

Ugh, that sounds awful, and I'm so sorry your sister's situation is that severe.
I know that with some cervical fusions, it can narrow your esophagus pretty significantly.
I have almost choked several times because of it, but I'm still able to have endoscopy and have been anesthetised so I guess I should be greatful for that small win.

I'm hoping that this complication won't ultimately be THE thing that causes some significant issue that leads to a bad outcome for your sister. I can only imagine how frustrating and scary that is for you as her sister.
But at least you have each other to lean on, and I'm sure that means the world to her.
Wishing you a good '25. Hope your sister is finding ways to keep pain at a minimum and staying as healthy and positive as possible!

@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