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jenningss
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 1/1/2009 12:33 AM (GMT -7)   
I would love to hear from anyone with Fibro that has experienced a tonsillectomy as well.  My ENT says that the CPAP is useless for my sleep apnea because my tonsils stay so large that I can't get enough air.  Any advice or stories of past experience would be appreciated.
Thanks in advance.

Mazfire
Veteran Member


Date Joined Oct 2008
Total Posts : 1683
   Posted 1/1/2009 3:52 AM (GMT -7)   

you came to the right place! my story is bad though, so im giving you a heads up, and remember, everyone's journey is different.

OK- well after a a lifetime of tonsilitis i finally found an ENT who was horrified that they were still in me- they were huge and literally blocking my airway. they were also pus coated and inflamed. I had the surgery, only to end up in hospital for 2 weeks, as i haemoraged on the table, then got a staph infection in the wound. i have had 9 surgeries for various issues, but this surgery was the most memorable. because the surgeon's view of my tonsils was obscured by all the blood, he failed to cleanly remove ALL of the tonsils. he left the stumps/roots of them behind (which i didnt find out from him- i found out about 6mths later when i came down with tonsilitis- ?- and went to a doctor who suggested i have my tonsils removed- needless to say, i was shocked, as i HAD them removed 6mths prior)

it turns out i actually had a real crappy surgeon, as he never told me of any complications and let me believe that aside from bleeding, the surgery was textbook. it took another doctor to note that i still had tonsils- not as big as before, but still tonsils. i spent 2wks in hospital and the staph infection masked the fact that remnants of the tonsils remained. i drank milkshakes and played video games (they only had a free bed in the pediatric ward and i was 20- i had a blast) also he was meant to remove my adenoids at the same time- he did mention that this 'slipped his mind during surgery as my bleeding out wasa concern'. tool.

i had the surgery at the hospital i then worked at as a nurse- my background in nursing told me something wasnt right- but i was that bombed on milkshakes and pethadine that i just soldiered on.

Needless to say, as i write this to you, aged 28, i currently have tonsilitis. i cannot put into words how angry that makes me. i get it 3-4 times a year like clockwork. i have surgery scheduled in April for a "throat scraping" where they dig out the leftover tonsils and make sure they get the roots as well. the tonsillectomy did NOT improve my sleep apnea, actually it improved nothing at all. to combat the sleep apnea i had major sinus surgery last year that was very successful and has made a huge difference.

But having fibro makes recovery from any surgery a more difficult task- but like i said, im 28, ive had 9 operations, not including day procedures, im sick as hell, but i work full time (now a high school teacher) and refuse to let the fibro kick my butt.

sorry that story was morbid- but thats my experience-

i hope you find the relief you need,

Maz XX


            'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)                  
 
Panic Disorder, Agoraphobia, CFS, Fibromyalgia, TMJ disorder, Endometriosis, PCOS, Chronic E.N.T infections, Reactive Arthritis, GERD, Sinusitis, IBS,  Allergies, Glandular fever, Migraines, Anemia, Chemical/Noise/Light sensitivity, Trichotilomania, PTSD, Seasonal Mood  Disorder, OCD, Benign Vertigo,  Impaired immune system. Tachycardia, tinnitus, low clotting factor= bruising. Tendonitis, Bursitis.
Meds: Zoloft 150mg. Xanax 4mg. Celebrex. Mobic. Panadeine Forte. Digesic. Nexium.
Multiple surgeries- I bear the scars of my poor physical health.
Age:28. First diagnosed at 14. Proud Aussie.
 
 


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 1/1/2009 5:06 AM (GMT -7)   

I also had a tonsillectomy nightmare.  I had them out when I was thirty years old after spending three or four times in the hospital on anti-biotic I.V's for infections so bad that they traveled up to the roof of my mouth and down my throat.  I had many bad infections as a teenager also and missed a lot of school.  I got out of surgery and immediatley started to hemmorage.  I choked on the blood and couldn't breathe.  I remember the nurses coming in and holding my arms up in the air thinking this would help me breathe.  What???  Finally after a day of choking and bleeding they decided I had just lost too much blood, took me back to surgery and with no anesthetic 'propped' my mouth open and went into my throat with a blow torch to cauterize it.  Then I went back to my room and had two transfusions.  When I went home I couldn't eat anything but cool liquids for two weeks so the scabs in my throat wouldn't break open.  I choked on every swallow.  I also had three small children at home.  I lost 15 pounds in a month.  It was the worse surgery I have ever endured and I have had many.  I would suggest that if you need to have them out, do it when you are young as the blood vessels in the tonsil tissue become enlarged and closer to the surface as you age.  That image they always give you of waking up from surgery with a big bowl of ice cream on your tray??  Not!  Sorry my story is so morbid and like Maz said, everyone's circumstances and journey's are different.  If your life is in danger you don't have any choice, but my suggestion is if you are over twenty years old...don't wait to have it done!

donn


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 1/1/2009 10:46 AM (GMT -7)   
Hi, Jennings, and welcome!  I had my tonsils removed when I was four years old so I can't help you there.  But, my adult neice, 32 years old, had her tonsils out a few months ago and had absolutely no problems.  You just need to check out the doctors before you have the surgery.
 
BUT,  I did have my entire colon removed, due to Crohn's disease, after developing fibro and that surgery went great too!  I had 89 staples in me after surgery and, a little over a week later, I was Christmas shopping at the mall for six hours each day...until I had to go back to the hospital to have the staples removed!  Again, I made sure I had a good surgeon and a good hospital so it was quite successful.  Five weeks later I had a New Year's Eve party for 40 people for their help while I was sick.  (I was 42 years old at the time.)  So, not all surgeries are bad with fibro. 
 
A positive attitude helps immensely!  When I went into that major surgery I was excited about getting better and going on with a good life.  I healed very quickly and I believe it was my attitude and faith, along with a good surgeon. 
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 1/1/2009 10:56:01 AM (GMT-7)


kwicker
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 1/1/2009 5:21 PM (GMT -7)   
WoW. The tonsil thing. I had tonsilitis my entire child life. At 23 I finally had them out due to the fact that I was missing so much work. I was in bed for nearly 3 weeks. No more sore throats until around the time I was diagnosed with fibromyalgia at 37.
I really believe although you feel so lousy you have to keep a possitive attitude. (I'm now 51 and do daycare). I always feel much worse and tired on the weekends. I think because I can lay around. You have to keep busy with things you really enjoy. I do scrapbooking because my family loves looking at my albums (My boys are 21 and 25). It doesn't require any physical work and the rewards are great.
Good Luck to you.

Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/1/2009 5:52 PM (GMT -7)   
I would still like to see a tonsil pole, but don't know how to do one. Not that it would have any meaning without a control group of healthy people.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 1/1/2009 10:35 PM (GMT -7)   
I had my tonsils removed when I was three years old. All I remember was being so terrified on the gurney they had to strap me down.

I had chronic sore throats until the age of 20 or so. Then they went poof. When my chronic fatigue acts up my throat is sore and my glands swollen. Rest helps me to overcome this.

Donnaeil

Oh, I have sleep apnea. I use a cpap machine.

ambi1204
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/3/2009 10:54 PM (GMT -7)   

I have psoriatic arthritis and on wednesday january 28, 2009 I had my tonsillectomy.

Im so glad my arthritis is controlled by the pain killer "hydrocodone". I take 2 table spoons every 4 hours.

this is my 6th day and i feel so depressed, it might be a side effect to the meds.

its difficult to swallow, and i have nightmares that my teeth fall. my tounge is swollen, and i speak like a deaf person.

I really thought i was going to heal fast. but i still haven't been feeling good. I sleep most of the day only awake 1 hour every four hours.

my diet consist of 6 table spoons of soup, vanilla 1/2 fat ice cream, lots of ice chips and water.

I've lost 12 pounds now. and its not a fun way to loose the pounds.

I don't have no one to stay with me, Im all alone since everyone works.

reading is a no no, my eyes cross and i feel sick to my stomach.

my boyfriend will call the doctor tomorrow, and ask for medicine that doesn't make me sick. I've puked about 4 times in the last few days. it hurts so much.

i just wish this is all over soon. its like torture.

 


steelladie
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/1/2009 9:35 PM (GMT -7)   
I have Fybro and have had my tonsils out at 34. It was a very painful procedure after the second day. I don't know that it made my fybro any worse, but the pain was pretty bad for over a week. I think being older was harder. I can say however that I hardly ever get sick anymore other than the daily pain that I have. I never get respiratory infections or a cold. Which brings me to another question, with fybro has any one experienced not getting sick much at all. I am just wandering if there is a link. Also, wandering what are some more natural ways to deal with it since I am on daily pain meds and would love to not take them. Any help would be appreciated, thanks so much!

austin73
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 11/2/2009 3:22 PM (GMT -7)   
I just had mine out this spring - right after being diagnosed with fibro.  I didn't have any horrible experiences.  Nothing worse than what they told me to expect.  I am 35 and they told me that it was going to basically suck and it did.  I was off work for two weeks and on hydrocodone the entire time.  I was taking it every four to six hours.  The throat pain was INTENSE but I am glad that I did it - no more sore throat every day.  I really didn't have any big flare or anything along with it - but then again, I was pretty heavily medicated so I might not have noticed. I slept most of the first week away I think.

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 11/2/2009 6:15 PM (GMT -7)   
Hi Jennings,
   I had my tonsils out 6 years ago at the age of 49 (I think I must qualify as the oldest?). Other than when
I was waking up trying to catch my breath because the anastesia clogs up my nose it wasn't bad. UNTIL
I sneezed and thought I blew my throat out. At midnight on a Friday night there isn't any place to go other
than the ER. The dr looks at it and says "Did you try ice cream?" ( and I think to myself...are you nuts? the
ice cream builds mucus and makes it worse in older people.)"No" I squeaked "I did ice water and it didn't help it".
"Well, there's not much I can do for you" and then he signs me out. No antibiotics, no antiinflamatories, nothing
but a $700 bill that isn't covered by insurance because it's not life threatening.
    Ice cubes and fruit juice frozen bars saved me as I knew what the ice cream would do. Other than the
aforementioned incident it wasn't too bad, I just talked funny for about a month.
   If anyone is having a problem with tonsillitis try using acidepholis. I used the pill form and every time I
ran out I'd end up with another infection. It kills off the bacteria that causes tonsillitis and strep throat.
                    Nana Monster
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