25 yr old with adenoid removal/ possible lymph node removal

[KindaWorried2008]

Sorry about the length, its complicated story....Im looking for any info or comments on what I am experiencing.... My left shoulder and arm started having strange pains and feeling abnormal, a day later my left node in my elbow started swelling and also behind my left knee.  I experienced extreme numbness below my left knee down to my foot, with tingling and odd sensations in my left foot and left hand as well, to the point I limped when I walked. The region where it felt like the nodes were swollen was very tight feeling on the skin and extremely itchy. The leg and arm were not painfull, just a very odd feeling.  I started having headaches and severe migraines everyday with vomiting, with ringing in both ears, muffled sounds and thumping in my left ear, and a few days later I felt tightness and pressure on left side of my neck. I have been extremely tired and dizzy off and on. Sinuses infections almost every week since January, very pale skin, and easy bruising.

I went to my PCP who sent me to an infection specialist two days later. I went to him and he called my PCP to have me admitted to the hospital to run "testing".  I spent 6 days of random testing starting on May 27.  I had x-rays of chest, left arm.  MRI of head and neck, ultrasound on vein on leg (to rule out blood clot), spinal tap to rule out menigitis, EKG, and tons of blood work -they used every single vein in my arms and hands, wich all collapsed and I was bruising all over for 3 weeks straight. My blood work just had elevated Sed Rate, elevated WBC of 13000, too much potassium. Im not sure about everything else, because the doctors really didnt discuss much with me. I saw a nuerologist who didnt think it was a neuro problem besides the migraines. The MRI showed bad sinusitis, mastioditis, and cerival lymphadenopahty with 2 nodes at least 2 cm, so they had me see an ENT dr.

June 9, ENT dr had me do audio testing, which came out fine.  He did the scope down my nose and throat and said I had bad adenoid tissue build up, wich is rare for a 25 yr old since they are suppose to shrink when your a child still. He said he needs to remove them with surgery and will check for tumors, ect. He sent me to do a CT scan of head and neck to recheck lymph node sizes in my neck, ect. He put me on two weeks antibiotics, nasonex, and musanex.  I went back on June 23.  He reviewed results, adenoids still need to come out, acute sinusitis still showing on CT scan, and lymph nodes are still enlarged. He felt around on my neck, said they still feel about 1.5-2 cm.  He put me on two more weeks of antibiotic (a total of 5 weeks) and wants to see my on July 23 in which He will reaccess again and if they are still enlarged (which he thinks they probably will be) he is going to do double surgery, open biopsy on my neck lymph node and adenoid removal.  They arnt sure if this is what was causing all the other left side of body symptoms.
My questions is...has any one had anything like this????  Couldnt these things be signs of something else?  What can I expect with the surgeries????? I am worried!

[hillgate]

listen...all of you. viruses and fungi account for more conditions than bacteria by far, and your lymph response is generally one of the first/only symptoms you get besides these disseminated conditions that 'come and go'.
doctors won't say much about viruses, because they don't understand them. even virologists and infectious disease docs are really quite clueless. they prefer to remain, and keep you in the dark, because they are terrified of what they'd find by shining a light... i'm sorry so many people have these chronic issues and are randomly medicated. blood and urine tests/cultures can detect a plethora of microorganisms, when specifically assayed, but many doctors will flatly refuse to run them, because they know treatment is limited, and they are immediately out of their depth. no one likes to look like an idiot, least of all an md, whose judgement is the only actual indication of his credibility. they would rather neglect your condition than misdiagnose/treat it, because that puts the onus on you. my honest recommendation is making a list of recurrent symptoms, documenting chronic conditions with photographs if possible but with exact dates and times, putting this evidence together in a simplified format, so their eyes won't immediately glaze, and putting your collective feet down. don't trust a diploma. don't trust them at all- if you took your car in for transmission work and all they gave you was an oil change, you would have some questions, and they deserve answers. not until patients take responsibility for their own health and become informed, then require their physicians to pay attention rather than collect checks will we have a chance of fighting what is a pandemic of viral and fungal infections. do your research, be thorough, and don't expect help- demand it. yes, we can...

[urchin]

hi, i've been trawling round the internet searching for someone like you-- i am a 40 yr old, with a wife and 2 young girls. i have my own business and 2 yrs ago,2007, i started having back problems and arm problems. the back problem has been recurrent, since 18yrs, and after an mri scan showed disc degeneration at L4+L5 discs, but no nerve compression.
so this did not account for for-
numbness in left foot, and pain radiating down left leg from groin.
tingling in both arms; burning sensations in both arms

symptoms kept getting worse, and have been prescribed-
gabapentin (700mg) 3 times per day.
dicloflenic sodium (50mg) 3 times a day
tramadol hydrochloride(100mg) 4 times a day
omeprazole(20mg) once a day
oramorph (10mg) 4 times a day.

kept going from doctor to doctor, no luck on getting to the bottom of the problems.

increase in symptoms included-
limb paralysis. burning sensations in finger joints.nerve pains.

was diagnosed with carpal tunnel and cubital tunnel, but these did not explain all my symptoms.
given another mri scan for cervical spine area, which showed C3/C4/C5 disc degeneration, bulging and narrowing- but still not explain all the neuropathies i was experiencing.
had a sore throat in jan 2009. given antibiotics to treat as infection as one of my neck nodes was up.still up in march 2009, so went back to doctors,who were concerned. within 2 weeks i had the node out(4.5cms diameter), adenoid tissue biopsy(abnormal tissue), ct scan showed large lymph nodes in arm pit, chest abdomen. awaiting results for biopsies- ent specialist reckons it is lymphoma-

other symptoms presented, but without realising any importance of possible lymphoma-

itching on arms
weight loss, for no reason
severe ongoing headaches
blood in phlegm
thickening of parotid and mastoid area, with lessening of skin sensitivity

sorry about length, but you are the only person with any symptoms close to mine.

[kalbre98]

I have been dealing with very similar sytems that you have had however not to the same severity that you have. I have been to the Victorian Royal Eye and Ear hospital in Melbourne, Australia (as I had a matoidectomy done 16 years earlier when I was 19) and have had a ct scan that showed up issues with my previous ear problem. However when the build up of debrie was removed from my ear from the emrgency department I was refered to the outpatients clinic 5 weeks later and it was there that the ent specialist took the time to do an endiscope up into my nasal cavity to check on my sinus and estascian tubes as I was still having various symtoms tha were not linked to my ear (mastoid issue). The ent doctor and one of her associates both discovered abnormally enlarged adenoids and called in the senoir supervising ent specialist as well to look at both my adenoids.with the endiscope camera. All 3 doctors agreed that it would be best to get me in to surgery as soon as possible to have my adenoids removed and to also have them biopsied as well. When I asked my specialist what was going on she tried to tell me only about the biopsy. When I explained to her that my younger brother died last year of brain tumours at the age of 26 and that I wanted to know what ALL of what was going on what the possibilities was she then explained that it could be just naturally enlarged adenoids that could be a geneic trait which is a possibility as alot of people in my family have large tonsil and adenoids. Option 2 could be Lymphoma which is basically Leukemia (which my grandfather had so that was also a possiblity or 3 an adenoid carcinoma which is a type of malinoma cancer. So I was sent to have all the blood test that you no doubt endured in your story I have also been sent to have the cat scan  with the contrst from the neck up to look at my lymph nodes as well as my sinus (adenoid) area and you think anyone will give my either of those results? Like you being left in the dark. However I am not going to have the surgery unitl I have been given the results of the bloods and catscan as if it shows up that my lymph nodes are enlarged (like yourself and by the way I have read that anything over 1.5cms is abnormal and can indicate lymphoma so if they are still giving you the royal run around ask to see a specialist in that feild to be safe) My theary is that if my lymph nodes are also abnormal and they are needing to come out as well that I might as well delay the adenoidectomy and wait unitl they can do the whole lot at once that way I am not having to go through the whole surgery , being knocked out and recovering thing twice as I have 3 kids to care for as well. So I have been a little bit luckier that I had another previous issue that was involving the same group of specialists to have a look at my problem so I didn't get too much of a run around however I can empathise as when I was 19 and had my ear problem (which was a cholestitoma in my middle ear, mastiod , look it up very, very nasty and I had the worst scenario of it) I went to 7 different doctors the eye and ear hospital emergency 8 times and was told repeated that it was only an ear infection here take antibiotics like you are being told and eventually it took for me to nearly overdose on pain killers and to be crawling on the floor in order to get from my bed to the toilet for the hospital to admit me and even then they misdiagnosed me. the only way they could diagnose what they eventually found was to cat scan me which is what I asked every doctor all along to do and all of them refused and it caused this problem to be dragged out for 6 months when it could have been found within a week. Because of that I now have no middle ear bone structure on my right side and when I go swimming I end up with ear infections in that ear as there is a perminent hole in my ear at my ear drum to assist with cleaning my ear adequately to reduce further infections.and it was on the verge of giving me mastitis and permanent brain damage as well as a permanent paralise face on the right side. I sometimes still get the vertigo when I get tooth problems, ear infections or flus. If you haven't got an answr yet don't give up keep seeing different doctors someone will get it right and hopefully the info I have given you can help. If you have already found the problem (as it has been a while since you left this message.) I hope that the problem was found and that all has been resolved so that you are healthy and feeling good again. 25 is too young to be feeling so sick all the time. Good luck.
From Kalbre98