Results Of Chest Ct---and C-spine, Mastoiditis?

[Maxine]

During my appointment with the pulminologist last Thursday he explained the chest CT results to me. He said he could only see some interstitial prominance, and it appears mild thank God. I was so worried about cancer. He said there is no cancer, and a CT would definately see that.

He will do a pulmonary function test, as I still have some struggles with shortness of breath spasms. It's hard to explain, as it feels more like asthma-------like air is being sucked out of me. Sometimes it feels like I can't get my right lung to expand fully. He said my lungs sounded clear. He asked if I ever heard anything about EDS affecting the lungs. I told him I'm just now finding out some people have had simular lung issues, and also told they have interstitial prominance.

The cervical spine CT showed some Mastoid opification, and reverse lordosis of my cervical spine, It did not report anything on the stensosis, herniated disks, or the instability. Once again my orthopedic surgeon looks at these tests and always tells a completely different story of instability, stenosis, disc disease ect. So have past neurosurgeons. Only four doctors said I have the cervical/cranial instability (CCI)----two of them being surgeons, the other 2 are my EDS geneticist, and EDS geneticist doing the study at NIH.

My PCP wants me to get one more opinion from a neurosurgeon. However, they all blow off anything on CCI. I still deal with the loose hinge feeling, and subluxating of my cervical/cranial area constantly. Tomorrow I see my PCP to discuss another visit to Cleveland Clinic.

I think it's odd that this opification of mastoid is there, as it was reported as possible mastoiditis in 2005. This is on the right side, and the swelling on my neck near clavical is on the same side. I have partially blocked CSF flow also. I can't help thinking this is all tied in together somehow. I'm still having the sharp shooting pain on the right side of my head and neck, and this spreads into my face. Basically the whole back of my head hurts, but the shooting pains are always on the right. I also have a prominant vertebral artery on that side pressing on the brain stem. This was found in 2002 by Dr. Heffez, the NSG who did my cervical spine surgery.

I'm feeling like I'm chasing my tail. I know the Cleveland Clinic won't get it eaither. The EDS and cranial/cervical instability issues are very complicated, and most patients with this don't get the help they need, or enough validation to have enough information in their records for proper ER care if something should happen. You just can't tip our heads back and intubate us like a normal person in an emergency setting. Even in an elective setting where I might have a reaction to a sedation drug docs need to know they can't tip my head back like that, as intubation may be needed for that too.

So here I sit feeling like I can't get a deep breath, and like I can't hold my head up.

BUT-------I'll work through it-----I'm just very happy the pulminologist said no cancer in the lungs.

Maxine :0)

[firewatcher]

Thank GOD for that! What a relief! Is there any possibility that your diaphragm is damaged or paralyzed? I know someone who had gallbladder surgery and they damaged her diaphragm and now she can't draw a deep breath. Could something be pinching the nerves that control the diaphragm? I have no idea how you test for any of that. Your description of trying to breathe just reminded me of hers.

[potsgirl]

Congrats, Maxine. It's also a welcome pleasure to get some good news.

Cheers,

jana

[Maxine]

Thanks for your support--

Firewatcher,

I also have thoracic spine problems, and I've had a lot of problems with that lately also. I asked about weather or no this could be causing problems, but no one really gave me and answer. I asked my PCP, and I asked my pulminologist. My pulminologist asked if I heard of anyone who has lung issues with EDS.

I told him I asked the doc running the EDS study at NIH, and she said some folks with EDS have had lung problems. My brother had a partially paralized diaphragm from his chemo----this was just a month before he died. I know that my diaphragm nearly caves in from hiccups when I drink a carbonated beverage when eating.

I have a completely desiccated disc on T-8 and 9. I also have herniated discs on c7-t-8, t1-2, t-2-3. I'm pretty tired of all of this.

I talked with the Cleveland Clinic at my PCPs request, and some young woman from their spine center asked about my different health issues, and she seemed lost. She said they will triage me, then call back in 24 hours. Tell me she's not the one who is going to relay this information to the appropriate doctors......... She did not even sound like she had any experience with medical terminology......... My PCP is concerned about the instability of my c-spine near my cranial area.

It looks like there isn't anyone there at the CC who would have extensive knowledge on EDS.

Maxine :0)

[janiedelite]

Oh yeesh, it does make one nervous when you KNOW you have more medical knowledge than the person who's supposed to "help" you.

On another note, I'm glad your CT didn't show any cancer. I hope you can get some more answers soon!

Janie

[all4family]

Hi Maxine,

I am so glad to hear that your ct shows no cancer!! woo hoo!! I am also sorry to say that I am just not soaking in what the rest of what you said means. My brain is on vacation. What is the mastoiditis?

Suzy

[Maxine]

Mastoiditis;

http://en.wikipedia.org/wiki/Mastoiditis

http://www.medhelp.org/posts/Neurology/Mastoidits/show/13833

Something isn't right, as I have had mastoiditis listed as a possibility in 2005 MRI, and now this CT scan show opification of the inferior right mastoid air cells.

I have noticed swelling on the right side of my neck near my clavical in the last month. We addressed this with my PCP, and he did an x-ray of my chest, and soft tissue in my neck and sinuses.

I still have swelling in the same area of neck and clavical, and continue to have pain on the right side of my head, jaw, and neck. MY speech slurs, my vision gets bad at times, and at night it's very difficult to see even with my glasses on. The more I'm up and about, the worse it gets.

I'm pretty disgusted how this gets blown off over and over again.

Maxine :0)

[all4family]

Hi Maxine,

Now I really feel stupid. When they did the MRI of my head it said I have fluid in my mastoid air cell....I told you my brain was on vacation. Well I hope this all works out ok for you. I'm keeping you in my prayers.

Suzy

[summer]

Hi Maxine,

I'm glad to hear that the CT did not show any cancer. That is wonderful news.

I'm sorry to hear about your ongoing issues with your breathing and CCI. It must be really frightening - And frustrating to be continuously trying to find someone with the knowlege, and the interest (and the compassion) to try to help you. It must be so emotionally draining to be dealing with this for so long.

I can understand your concern about things like emergency intubation, etc. Do you have a medic alert bracelet indicating your cervical/cranial instability? Even though the docs and nurses in an ER might not know much/anything about CCI, you can be sure it would get their attention quickly and make them cautious, probably chosing to treat you as if you had a neck fracture. Also there would be a number they could call immediately to get info, or precautions they should take because of your condition. This would be important info for any emergency responder to know in the hospital or out in the community.

I worked for some time in an ER and can tell you that a medical alert bracelets are looked at right away. Before anyone has time to go through medical records. Perhaps you have one already.

Summer

[Maxine]

Thank you for your replies and support--

Summer, I don't have a medical alert bracelet, but have thought about it.

The trouble is proving it on paper. So far not one MRI has listed instability, but four doctors have said I have it, two of them being surgeons with experience in CCI related to EDS. Meanwhile I have the slipping, shifting, and subluxating in this area. Not a great area to have this happen. Believe me, this is not something someone can imagine, and i don't want to wait for autopsy results to prove I have this.

I don't know if wearing a bracelet would help, because even after talking with an oral surgeon about a tooth extraction, he was dismissive when talking about bracing my neck. He had talked with the geneticst at NIH, and my EDS geneticist in Cincinnati, who know about my instability, and discussed what the orthopedic surgeon said about the CCI. At first he was taking it seriously and wanted to use a halo----that's how serious he was. Then he read old notes from a visit to a NSG I had at the U of Mich. hospital, and since they Doc was an old timer, he used his notes as gospel, and blew it off. However, he did ask me to wear my hard cervical collar----"just in case". This oral surgeon was also from U of Mich. I also saw another young NSG, and it was a total joke, as this guy said not only am I imagining the whole thing, but any doctor who has told me I have instability was "putting things in my head".

I told him he needs to go back to medical school, and that he was wrong! I told him he obviously doesn't know what he thought he knew about EDS, and he should know better, as one of the targets of joint instability is the spine, and cervical spine/cranial area. I blew HIS comments off!

I don't know how much longer I can push my luck with this------------I have been very blessed so far this hasn't caused anything more serious.

I keep praying.

Maxine :0)

[Tommyhoney]

Maxine,

If you don't mind my asking, what specialist did you go to concerning spine issues, at the onset. With all my Pots and Rheum. things to deal with I've been putting that off, but now it's time to address that one too, way too much clunking, and sliding going on.

Thank-You

Tommy

[Maxine]

My orthopedic surgeon is Dr. Durrani.

http://www.castworld.org/our_physicians.html

He is licensed in both Ohio and Kentucky. He operates in several hospitals, including Cinciinnati Children's Hospital.

Keep and eye on that slipping and sliding, as I read about this in relation to rheumatoid arthritis----

It's not pretty, and I'll say a little prayer you can get the help you need for this----AND be taken seriously.

Maxine :0)

[Tommyhoney]

Thanks Maxine, right back at ya with the prayers, sounds like you've been throught the ringer.

They diag'd me w/RA last year.....but now my new Rheumy says "undifferentiated connective tissue disease" that has a nice ring to it I think......I'm afraid to go to Orthopedic about my neck, don't want surgery, and I'm afraid that's all they'll have to offer.