I would sent (USPS) the CD of CT scan in immediately to his office. If you dont have the CD, request radiology group via release for to send to him right away. In the meantime Lauren may take a few days to get back to you. They send forms out via email to fill out as well as all insurance info,etc. which I did immediately so when the disk came in, they had all my completed paperwork and then you are put in the que.
Alot of rhuemologist do autoimmune testing which wouldnt hurt but if the area swollen, I suggest like what I had was injection of steroids to knock it down to reduce swelling and a nerve block to kill the pain for now although they seem short lived you get some relief. I laid in bed for days with ice packs on the side of my neck and skull. Pain meds hardly touch this. You just need to get to the right doctor who knows how to do these type of injections. A few years ago, I was given loading doses of dexamethazone (steriod) orally which seemed to help some at the time for swelling and inflammmation. This last pain flair it did little and once tapered down, it all came back. I hope you get some relief soon. Where do you live?
Hi dharmadel, I have nothing to add to the excellent advice you are already receiving except to send my support and âhang in there.â There will be a light at the end of this tunnel, although few of us anticipated that the tunnel would be lengthened by of all things a pandemic.
Another ER visit, another Dr. saying absolutely nothing is wrong. I tried SO HARD not to go there I donât want to get sick!!! SO, I need to get this new scan and go from thereâŚand I guess check with Dr. Samjiâs office and see if I can afford this!
If you have a CT scan w/o contrast, that shows your elongated styloids & the condition of your stylohyoid ligaments, you wonât need to get another scan. If you had one done w/ contrast, Dr. Samji wonât accept that so you will need one w/o contrast.
Thank you for replying. It was w/o contrast. I also have others w/o contrast. I have a feeling my styloids are really thick as well. My salivary gland is huge and creating a mucus plug (I can feel it) and it is pushing on my neck. Normally i clear my throat a lot and swallow it. today it is pluggedâŚfeels like someone is stabbing my neckâŚI am having motor function loss in arms and hands and every one in a while my legs jerk. I wish someone would just listen to me. About what I feel in my body. although my GP is awesome I must admit but he is retiring!. he got myt scan stat. He could not get my brain from the system because it was an outside mri place, but it says changes not normal in person my age, consider ichsemia or embolic reasons (back in 2017)âŚi am not gonna look up spelling my hands are hardly working. After the scan yesterdday the guy aSKED IF I HAD BEEN DIAGNOSED WITH EITHER. I said diagnosed? He said yes. I said No and said no more as i have been told to say less. less is moreâŚoops on the caps! Thoughts? OHâŚalso, when I sit on the toilet (sorry) I tend to lean forward, and every single time I can hear my veins/possibly corotid artery? bubbling like they are being cut off?
could not get brain scan from systemâŚsorryâŚWould Dr. Samji do a written work up of the scanâŚas in could i pay for him to write up a report as he does that in the first place?
First off, Iâm really sorry to hear you had an irregular brain scan 3 years ago & no one has discussed that with you. It is possible that if youâre having vascular compression caused by ES, & your head was in a position where the internal carotid artery(ies) or jugular vein(s) were being compressed during the MRI scan, the blood flow to your brain could have have been slightly interrupted. That would account for the diagnosis of possible ischemia (reduced blood flow to the brain) or embolism (something blocking proper blood flow to the brain i.e an air bubble or other body substance). Youâll need to contact the MRI facility that did your scan & request a copy of the scan & written report. You are entitled to them. They supposedly keep those records for 10 years.
The mucus plug & salivary gland problem sound miserable. Iâve had the mucus issue before so now how uncomfy that can be. The salivary gland is also in an area Dr. Samji deals with so you should send him a copy of the scan that shows that along w/ your CT scan.
Dr. Samji wonât want your brain scan as that is not w/in his specialty. He is a throat/vocal cord cancer specialist & skull-based surgeon which is why he knows so much about the area of the neck where the styloids are. He likes to receive the CT scan (in CD format - as per Snapple2020) & the written radiology report. He will review your CT scans, measure the styloids himself, & make a judgment regarding ES from that. I expect he would give you a written report of his opinion if you ask for it.
I canât say that the problems in your arms/hands & legs are related to ES, but it is possible. It could be the enlarged salivary gland is pressing on the accessory nerve & maybe some others that are creating at least the upper body problems.
As far as the sound in your neck when you lean forward from a seated position, it could be internal carotid artery or jugular vein since compression of either of those generally occurs only when your head is in certain positions (different positions for different people). Do you get dizzy/light-headed, tinnitus or a headache during/after you hear the bubbling sound?
I think Iâve answered all your questions. Please let us know if you have others.
Hi Isaiah,
I absolutely believe that my styloid and irritated gland affects my veins/arteries. When my head is bubbling I can feel them and hear it inside bubbling on my ear canal. My Neurologist ordered that test. Before that I was already diagnosed with Dysautonomia and autonimic neuropathy. This whole puzzzle has cost me my job and my livlyhood. I remember now that this has happened in the past. Except it has always previously affected my tonsil. I think it was pushed out, pushed on and I ended up in the hospital every single time. And told to have my tonsils removed. Severe dehydration, huge abcess, etcâŚSo I think I have possible two things playing off of each other. Styloid and salivary. ENT wants me to go somewhere I cannot because we are under an order to stay in placeâŚhe thinks is a RHEUME issue. I was supposed to be tested for auto-immune issue but never was. The plug area is very close to tonsilsâŚkinda right behind and upâŚwhen it drains it changes my voice. I think my styloid has caused a lot of problems for me my whole life. I think it just happens to be happening at same time as gland issue, just because. Hurrah! OH the reason I know about that brain scan is I finally went and got my scans and reports and there it was. I have 3D slicer images that show the styloid and my jaw and vessels (I donât know which ones) in between the twoâŚlike you can see that the styloid is touching them. Having word recall issues too, btw but my head is pretty dang full.
If you go bigger size you can see itâŚthe tip comes out at the bottom of some very tangled or overlapping âstuffâ. Add inflamed salivary gland and wa-lah. Itâs all getting pushed into a very tight space. I am scared to death. No one is listening.
I agree your styloid does look long & thick. The âstuffâ looks like vascular tissues to me, but those wouldnât show up unless your CT was done w/ contrast. Since you said it was just a straight CT scan (no contrast), I canât account for the âstuffâ that partially blocks the styloid process. Sometimes there is what are called âartifactsâ that show up in CT scans. These look like something significant but are truly nothing noteworthy. Perhaps what we see as blood vessels is an artifact? What does your other styloid look like? I assume the CT scan shows both sides. Iâm no good at reading slices but thatâs what Dr. Samji is good at.
Autoimmune disease can be tricky to diagnose & always to treat. Itâs a balancing act w/ meds, diet & lifestyle to get good results w/ remission. Rheumatoid arthritis (RA) is generally diagnosed & monitored via blood tests as are many other autoimmune diseases. As far as the autonomic neuropathy goes, ES can affect the nerves that cause the symptoms for that. Iâm not saying you donât have it, but you might find significant symptom relief once that styloid is removed.
Regarding your salivary gland, even if it is a separate issue, if itâs ultimately left in place, I think that having the styloid gone will help it recover at least to some extent.
I vote for sending your CT to Dr. Samji & letting him give you his opinion. Do contact Lauren first to get an appointment set up & a concise list of what you need to send so the process is expedited.
They are very long & thick, so I do think that youâd be better off without them!
I donât know how the system works in the US with your medical notes; it sounds like every time you go to the ER the doctors are influenced by something in there, which is what youâve said yourself, & are not looking properly at your CT scans, & ignoring your symptoms too, especially the swelling. If Dr Samji just reviews CTs & doesnât see all your notes, then hopefully youâll get his unbiased, expert opinion as to whatâs going on. Unfortunately I think it looks like the best option for you, as anyone locally seem to being blinded to whatâs wrong with you.
Best wishes, I know itâs really tough for you, try & keep strong for your familyâŚ
I have to find that ct scan and the addendum that actually states the lengthâŚI am cleaning my room (house still not fixedâŚbad contractorâŚand we are still living out of bedroom) and I know it is here somewhere! I do not know if I am ready for a surgery at this time and we are under a stay at home orderâŚthat is why I asked if he would do a consult and write up?
He does phone consults, yes. I doubt many doctors are seeing patients face to face right now anyway? Surgeries are getting postponed too, but if you could use the time to be getting a plan into place, that would be good.
dharmadel,
Dr. Samji will given you a written consultation report so you can take it to another specialist in your area. Pressure on your nerves and arteries in neck could mimic some symptoms of dysautonomia but doubtful given you have diagnosis as well as the neuropathy. I have the same neuropathy issues along with Ehlers Danlos. My daughter has severe POTS / Dysautonomia and the neuropathy also which we have been dealing with for many years. She did 10 day inpatient study at Vanderbilt where e also discovered she had significant low blood volume, neuropathy,etc. After many specialists over the years, she gets weekly saline infusions to pump up her blood volume. In the past, nephrologist also recommended salt pills. You mentioned the dehydration so that is why I mentioned it. Wondered how your dysautonomia was being managed. There has been some talk (lab in Germany) among the specialist in states about some auto-immune factors trigger it.
