frustrated

mother-earth
0 Recommendations

It started with a chest pain in December 2007, which took me on a journey of Doppler, chest x-ray, four CT's , countless blood tests, broncoscopy, GP, specialist and surgeon's. I have enlarged lymph glands in the mediastinum growing and spreading. Eight months nearly and still not confirmed,could be Sarcoidosis, Lymphoma, frustration part is no surgeon will operate on me because I broke my neck in a MVA a few years ago, and it is not stable so no one is prepared to take the risk at this stage. Apparently they are telling me the only way to get a accurate diagnose is though a mediastinosopy. So my frustration is the wait, the absolute life change I'm experiencing because I'm unable to lead my old life. I have read so many dicussions of other people and I have had more answers in this support network then I have with Dr's. Just need to know what I'm dealing with , I'll go insane!!!!!!!!!!!!

15 replies

alifay

I was told at one point that they could do a biopsy using a Cat scan and going in between your ribs to get an lymph node.Paradox can probably tell you more about this.
Good Luck,
Alice

Michele5

Have any of your CT scan showed changes in the size of the swollen lymph nodes? I was going to have a mediastinoscopy but the surgeon said it wasn't necessary because the lymph nodes had shrunk, therefore ruling out lymphoma.

Michele

mother-earth

Hi Michele5 I had three CT of the chest and the last one said they had grown and there was more, and that the disease was progressive, they won't treat me because they can't operate, because I have disc protrusion in C65/6/7 after MVA where I fractured my neck in seven places, if your lymph nodes have shrunk how did they know you had sarcoids , did you have a biopsy.
Mother Earth

dieveg

Hi. I was told I had Lymphoma back in May after several months of "unexplained" symptoms, I had a chest xray and they immediatley called me back for a scan, it showed 6 LARGE lymph nodes in my chest I consultant challenged the Lymphoma theory and sent me to another hospital for a biopsy, I was sedated and a tube inserted down my throat, the pain I was in after for a week was awful but the results did show Sarcoidosis, I was told that my Lymph nodes are pressing on my gullet and Lungs thats why I have a "blocked" feeling in my gullet and am breathless and coughing, Like yourself I have found out more yesterday by joining and looking at the different sites then any info the hospital have told me, they said they will start me on steroids but want to "wait" to see if it clears itself, theve not mentioned what steroids and I've had to look them up and read the side effects.
MIND YOU I'm glad it's this and NOT Lymphoma
Diane

Sara2

Yes sometimes we get initial wrong diagnoses. I ended up in the ER one time and I was first told that I had lung cnacer, then I was quarentined thinking that I had TB! Hang in there and have faith!

Cheesypops

I just had mediastineoscopy...and I am aware that certain Physiological characteristics on some patients cause the Surgeon to have to enter in from the side.

I was told this would cause a short hosp stay (2days) as they would have to use a chest tube for that entry.

Not sure if they would intubate, but I am suprised that there isnt someway that the could get the sample needed. Albeit a more painful way, but the ends would justify the means I would think.

Best of Luck

micheleb

I was first offered I think what they called just a needle biopsy, where they would numb an area on the side of your chest, under your arms and stick a needle in and draw a biopsy from one of the growths. Than, they came back and said that my growths weren't in a good position for this and they would probably collapse a lung if they did it-no thanks. But maybe yours are in a better position for this procedure, I wouldn't think your neck issues should have any bearing on this. I opted for the mediastinal biopsy but I have no structural issues like you do. I agree though, there has to be another way to get a sample without having to mess with the area around your neck?

yankeefan

I was hospitalized in May of 07 because my kidneys were not functioning then they did the chest xray and told me I had lymphoma. They were trying to get my kidneys under control for chemo and they went ahead and did a bone marrow from my backside? and a needle biopsy under my arm pit but they had to use an ultrasound I think to find it. Anyway they were able to tell me it was the sarcoid with just those tests. I don't know why they can't try that at least on you. I am so sorry they are putting you through that. It is awful anyway but the unknown just makes it worse. I would ask about the bone marrow or needle biopsy.

mother-earth

Thank you for all your answers, I so appreciate having other people out there that knows what it is like, I'm certain I have Sarcoids, not Lymphoma , it seems that everyone seems to have gone down this path. More I get to read from all of you, the more relaxed I have become, I just haven't had the best of Dr's advise, which makes it frustrating. Who would of thought you would give a sigh of relieve if you were diagnosed with sarcoids......
Thanks again....mother earth

DebiT

I had a biopsy of one of the lymph nodes in my neck. I had the diagnosis within a week but so far no one is treating my condition either. The rheumotologist said I should maybe wait and see. The ENT doesn't treat sarcoid even though my main complaint is a constant sinus infection and inability to breathe through my nose or to catch my breath at times. My Primary says that we need to take it slow since this disease affects major organs! TAKE IT SLOW?! I am having Pulmonary Function Tests done this week and then an Echo Cardiogram and THEN the Pulmonologist will see me. The Chest CT Scan I had shows numerous enlarged nodes. I guess we can assume that I have sarcoid in my lungs. But yet no treatment. I am hoping for answers from the Pulmonologist and at least some idea of how to deal with this. I can't imagine that I am going to feel the way I feel now for the rest of my life. It scares the crap out of me. I'll be 38 this week I have two little boys to raise and can't afford not to work. My desk job is exhausting at this point!

Michele5

Mother Earth,

To answer your question, my doctor isn't 100% sure I have sarcoid not having found granulomas in the needle biopsies (bronchoscopy and endoscopy). I guess that happens a lot, where a positive biopsy cannot be found. My symptoms point to it and other tests have ruled other things out so my doctor is about 99% sure and I'm in the wait and see mode (no treatment at this time).

Michele

dieveg

It's the wait and see method that makes you more anxious I find, It was an ultrasound guided needle biopsy I had and was warned that they MAY not get enough of it to determine the diagnosis BUT luckily they found the granuloma's. I truly hope you get the answers soon as I found this unbearable, Debi T I've just turned 39 and this exhaustion for me is a nightmare I don't work a the mo but my 3 yr old is a whirlwind and I can't keep up with him even tho' he has a disability as well HOW your coping with a job is beyond me, Hope your well soon
Diane

mother-earth

No I'm not working, I wrote what I do, briefly but I haven't been able to work for a a few months now, I've been so sick for eight months, but the last four days I feel a little better, is this usual...hope it lasts a little while so I can get some things done that I have just been looking at, and I'm talking every day things...
Thanks for the kind words....

jbrock

Hi MIchele;

I had one ( I can't remember how to spell the word) and it wasn't bad at all! I didn't have to stay overnight. The surgeon put me to sleep and when I woke up I had a small incision alonged with my clavicle in the middle of my neck. I was told that was the best way to insure an accurate diagnosis. I do have a small scare which is barely noticeable unless i mention or point it out.

momof10

Hi all,
I just had the mediastonoscopy (SP?) this past monday, I didn't have to stay overnight and I don't feel too bad,, only the same way i've felt for the past two months. I am absolutely exhausted all day.. I could easily go back to sleep within two hours of waking.. I have 4 children at home ages 8,13,15,16 and a one year old baby girl I am fostering.. She is an easy baby and thankfully the older children help alot. I haven't even talked with a dr. yet to see what treatment I'll need.. does anyone wish to share what is the next step after the biopsy I had on monday.. they also thought I may have lymphoma...
thanks,
becky mom of 10

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 348,756 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,792 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You