Friday, July 14, 2006

Frustrated

I’ve been unwell again for several weeks. I wish that I could say that I have been on a sunny, warm and fun-filled vacation with my family. However, I’ve mostly been sitting in bed.

As soon as I stopped taking antibiotics, my symptoms returned. Chronic pain, stinging and swelling in my jaw and neck below the extraction site are a part of my daily life. The lymph nodes on the left side of my neck are tender, painful and swollen. I also have been running a fever from about 99.5 - 100.5. I’m also having headaches, pain running down the left side of the back of my neck and pain in my left ear. The back of my throat has a few white patches on it and some redness and lymph node swelling, which is more pronounced on the left side. Depression is beginning to set in because I’m beginning to lose my patience and hope.

It will take me a while to outline the battery of tests that I’ve been through…

• CT scan of my head and neck looking for an abscess, which was unrevealing except for swollen lymph nodes and a nodule on my thyroid and a cyst in my left sinuses. This test was done a month ago after I had been on Clydamycin for five weeks.
• Stool sample to test for Cdiff infection following colitis symptoms, which was negative.
• CT scan of my abdomen to rule out complications related to antibiotic induced colitis which developed from having been on Clydamycin off and on for more than two years to treat the infection in my gums pre and post extraction of my two left wisdom teeth. It was normal.
• Ultrasound of my thyroid, which revealed that my thyroid was normal and the nodule was benign.
• Camera/light on a wire cord was fished down my throat through my nose to look at my throat.
• Bone scan of my head and neck, which revealed increased uptake in the left side of my neck and brain, but it was not read as osteomyelitis
• Skull X-ray to rule out the cloudy reading/uptake in my brain was read as normal.
• Two EKGs, which were normal.
• Chest X-ray, which was normal.
• Echocardiogram, which was normal.
• Dental scan, which showed the swollen lymph nodes but no issues visible in my jaw.
• Battery of blood tests and cultures were all within normal limits and showed that I do not currently have a systemic infection.

I found all of the tests frightening, several of which required injections of dye or radioactive materials and my body being enclosed in a claustrophobia inducing machine. I’ve been exposed to a lot of radiation. I’ve had lots of blood drawn. Most of the tests were done at the hospital in which my mother died last year, which is still fresh in my heart and mind, so it’s emotionally challenging to even approach the giant brick monstrosity and it’s professionals who were unable to save her life after she was diagnosed with acute myeloid leukemia.

I could complain for much longer about having been sent to the ER three times by my physician (once for a CT scan of my head and neck, once for back pain from colitis and once for chest pain which I believe is related to the jaw/neck infection)--and for having seen my oral surgeon, regular physician, an ENT specialist, a periodontist and an infectious disease doc, all of whom have not come up with a treatment plan or any answers for the reason I’m having these symptoms.

I’m not sure how much longer I can endure this pain. I don’t want narcotics to mask the pain. I want someone to figure out what is causing my symptoms and fix it.

The consensus of the doctors was that I should get a second opinion from another oral surgeon. I called the guy who my physician recommended and the receptionist told me that they would not see me. She told me it was their policy not to see patients who had work done elsewhere.

I believe that my current oral surgeon is a nice guy, but he doesn’t seem to be taking me seriously. He also seems somewhat defensive. I was told after my second recurrent infection post surgery that it was unrelated to the extraction. I patiently explained that the pain that I am having is most definitely coming from the same place where the tooth was removed, deep under my gums and radiating in my jaw. There is obvious swelling directly under the site on my neck and the lymph node chain is quite swollen and tender all the way down my neck and into my upper chest. The left side of my jaw is also visibly swollen and my face and neck are asymmetrical. The muscles on the left side of my neck are protruding due to the lymph node swelling. I am having obvious intermittent chest pain. A few days ago I had pain radiating from my chest into my left shoulder and down my left arm and into my wrist. My chest feels like it is throbbing on occasion. If I follow my lymph nodes down my neck and the same line down my chest with my fingers I can follow the pain on the left side of my chest. It does not feel like chest wall pain, but rather like arterial pain.

My family doctor is the guy who initiated my tests and referrals to specialists. He isn’t particularly warm, but he seems to be trying to help me find the answers. The specialists all seem to point me back in the direction of my oral surgeon who suggested that I rest, eat well and eat lots of yogurt. He told me that I needed to stay off of antibiotics due to the fact that I developed colitis from taking Clydamycin for so long. However since I have discontinued it, my colitis has resolved, but my lymph nodes have become more and more swollen and tender and the aching pain has become more acute in my jaw. It has gotten to the point where I cannot even sleep on my left side because the pressure on my mandible causes me pain.

I am assuming that all of the doctors have refrained from starting antibiotic treatment due to the fact that my tests have been unrevealing and because I had a bout with colitis that could return if they restart antibiotic treatment.

I am also allergic to amoxicillin/penicillin, which limits me to other more expensive drugs.

I am concerned that the infection will continue to worsen without treatment. However I have been told that there is no definite evidence of an infection by my family physician as well as my oral surgeon who suggested that my pain could be muscular in nature. However, that does not explain my chronic low-mid grade fever and pain, as well as the lymph node swelling in my neck. It also doesn’t explain why when I bite down I hear a crackling and fluid sound deep in my left jaw and feel fluid pressure behind my jaw bone and leading all the way up to my left ear. The entire left side of my jaw is also tender to touch.

My pain has never completely resolved post extraction, nor have the symptoms of infection other than while I was taking Clydamycin. Every time I discontinue the drug, my symptoms return and increase until I begin taking medicine again.

Post my second oral surgery in the beginning of June (ten months after my extraction), which was done to check for bone fragments and to clean/rinse out my gums and check the top of my jaw bone, I had inflammation and swelling in my jaw. The jaw inflammation and swelling from the procedure almost completely resolved. After I discontinued the Clydamycin on June 14, the jaw pain and lymph node swelling began to increase. I have been off of Clydamycin since that time.

My oral surgeon chose to do the second surgery despite the fact that the CT scan that my physician ordered didn’t show an abscess or any mass.

I was given one course of Metranidazole post Clyndamycin to treat the colitis. It resolved as my jaw pain increased.

After I took my last dose of Metranidazole, I woke up with hives all over my legs the following morning. I don’t know if it was an allergic reaction to the medication or a reaction to the radioactive material which was injected for the bone scan two days prior. It also could have been due to anxiety, although on the rare occasion in which I get hives from being anxious there is usually one or two on my neck rather than several all over my legs.

I am not currently on any antibiotics. I feel like I might require a dose of IV antibiotics to resolve the issue in my jaw, neck and chest, but I haven’t been given anything due to the unrevealing tests.

On the day of the second surgery, after my oral surgeon completed the procedure he hoped that this it be the answer to my long standing problems, although he stated that he saw no visible abscess and he said the portion of the bone he saw looked healthy. He questioned whether I could have a problem in my mandibular or parotid arteries or some kind of other issue, although he doubted it.

He assured me that my body had the ability to heal sans antibiotics and that I wasn’t going to die. He also told me not to see any other doctors, since they would likely prescribe more antibiotics. However I had to see my regular physician after I had several days of abdominal and back pain and mild diarrhea after discontinuing the Clydamycin. It took me a few days to realize that it was likely antibiotic induced colitis and that I would probably need Metranidazole. At that time, my physician also initiated most of the other tests regarding my dental issues.

Osteomyelitis was questioned, which was read as negative by the hospital physician. I don’t think that the films were seen by my oral surgeon.

During my visit to the hospital for chest pain, the ER doctor ran a battery of blood tests and cultures, which were within normal limits. I also had an EKG and chest X-ray which were both normal.

I contacted a periodontist due to a suggestion by my orthodontist. The periodontist told me that he would help me find some answers. After a brief exam and extensive discussion, he wrote me a prescription for Doxycycline which helps slow down the process of periodontal disease, but told me that it wouldn’t really treat my problem if I had some kind of infection. I dropped off the prescription at the pharmacy, but never picked it up. He recommended that I write down my case history, which is the reason I am writing this. He was the most kind of all the doctors who I have seen. He seemed to understand my distress and offered empathy. However he was unable to help me directly.

I most recently visited an infectious disease doctor referred by my physician. I briefly repeated my case history. I explained that I had had bouts with pericoronitis in my lower left gums around my erupting wisdom tooth off and on for about two years prior to having the tooth extracted. I finally had it removed after my mom died. I put it off at first due to fear of having it removed (and hope that it would resolve once my tooth finished pushing through the gums) and then because I was visiting my mom at the hospital every day during her sudden bout with blood cancer.

His was response was to explain that my temperatures are not in an alarming range. It was 99.6 at his office and has been about 100 each time that I visit my regular doc. It has remained in the same range each day when I take my temperature at home. My temp when I’m well is about 97.7-98.6. The ID doctor also told me that he had no idea about the mandible and to explain to my oral surgeon that while I value his opinion and help, would he please recommend another oral surgeon for a second opinion if he had no other suggestions for me. He stated that there is an obvious problem and pain and he acknowledged the swelling in my neck, but he said that he didn’t know why it was there. He also recommended that my oral surgeon take a direct look at all of my films and tests and told me that he might have access to a computer for the hospital which would show all of my tests. He suggested that I start taking something stronger for pain. I told him that I didn’t want pain killers, that I wanted the source of the pain resolved.

I left his office on Tuesday morning feeling kind of numb and hopeless.

I don't make an appointment to see a doctor unless I feel obviously ill for an extended period of time. Until my wisdom tooth issues began, I very seldom saw a doctor. I think that a lot of people overuse antibiotics and that my body will usually heal by itself. I’ve been lucky not to have had anything more serious than colds or sore throats. After my mom stopped making me see the doctor as a teen for every sore throat, I have rarely seen the inside of a doctor’s office other than for my children’s routine physicals/shots.

The past few weeks have been extremely stressful and emotionally draining. I feel guilty because I haven’t been able to take my kids to the pool or elsewhere. I’m kind of glad that it has rained so often. The yucky weather made me feel a little less like we were missing out on enjoying the summer sky.

Thankfully my dad has been taking my daughter to her swim team practices. I have managed to make her swim meets. I especially didn’t want to miss her first one. I figured that I’d feel sick at home or poolside. I wanted to cheer her on and hug her after every lap. She is a fantastic little swimmer. I’m very proud of her.

Fortunately my son has been helpful. His silliness and hugs have given me strength. Hugs from both of my kids melt my stress and leave me feeling temporarily giddy. I love the smell of their hair. I’m so happy to have two affectionate and adorable children. I just wish that I was all better so I could give them a better me.

My son is flying to Florida on Sunday with his buddy and their family. They will be enjoying Disney World, beaches on the coast and lots of sunny activities for one week. I am glad that he will be getting out and enjoying life even though I will miss his big affectionate and amusing presence.

My sister is a registered nurse and she is concerned about negligence in regard to my treatment. Her best girlfriend is also a nurse and works in telemetry at the hospital and they convinced me to listen to my physician and orthodontist who encouraged me to be conservative and visit the ER for the chest pain. They also both think that I should just be given some IV antibiotics, but I told them that the docs won’t recommend it and the insurance won’t pay for it without positive test results.

I am not concerned with placing blame. I just want someone to offer genuine help and concern. I need the help of a medical professional to find a way to resolve my health issues. I feel like I’m being treated like a hysterical female even though throughout this entire ordeal I have remained polite and patient with each and every doctor despite my chronic and worsening symptoms.

I calmly told my oral surgeon that I was worried. He told me that he has seen lots of patients near death from infections and the last time that I saw him three weeks ago, I was nowhere near that sick. I have been told that I don’t look that sick by my regular doctor and the periodontist, but I certainly feel quite ill.

I’m left feeling like my body is being poisoned by pain and bacteria with no answer in sight.

I have a follow up appointment with the ENT office on Monday. The doctor I saw last time diagnosed me with thyromegaly and told me about a nodule on my thyroid. It added to my concern about my jaw, neck and colitis issues, which turned out to be nothing worth worrying about following my ultrasound.

My regular physician explained that they may want to do a biopsy of my lymph nodes in my neck. However, I don’t believe they are the source of the problem. It’s coming from my jaw. The infectious disease doc said that the chain of lymph nodes in my neck is a response to the problem. But nobody seems to have any answers.

I think that I have done everything in my power to try and heal. I have rested as much as possible. I am drinking plenty of water and decaf hot tea to sooth my throat. I have eaten yogurt with active cultures at least once per day and maintained a well balanced diet. I have tried to go to bed early most nights. I gave up the one drink that I used to try and remember to have some evenings to try and prevent heart disease. I read that I shouldn’t drink alcohol while taking Metranidazole. The drink had been giving me some brief relief from the pain in my face and neck. I had to give up my regular exercise program due to the acute pain from the colitis and increasing pain in my jaw and neck. However I have tried to do some gentle yoga for relaxation. I take a daily multivitamin. I don’t smoke or use any recreational drugs. I brush after every meal and use mouthwash and did regular warm salt rinses post surgery. I use warm compresses to try and reduce the lymph node swelling in my neck about 3xs per day. I have been taking warm showers twice per day and allowing the warm water to run down my sore neck, which helps relieve some stress.

8 comments:

Anonymous said...

Jess, go to Mayo Clinic. You need to be treated holistically. Each doctor works together there...if you go to individuals they treat what they know...and don't look beyond it. Your insurance will pay...you need this.

Here's the link: Mayo Clinic.

I hope you get well soon. Do look into Mayo (or a research hosptial like it that looks at the whole patient). You can't keep going like this. Obviously something is very wrong. Sorry to hear it.

Frank

Bud said...

Jess, there is also the U of Penn. Not too shabby a place. You're getting a runaround and it sucks. I want you to feel better.

PaxRomano said...

Sorry about all of this...I think I might have mentioned that for the past few years I had a ton of dental work done, and at one point I had a recurring infection. Eventually they gave me a series of IV antibiotics and that did the trick.

Good luck and like Bud said, contact the U of Penn or one of the teaching hospitals near by.

Of course, you know how this will play out don't you? One morning you'll wake up and the pain will be gone and the whole thing will just be an unhappy memory.

Good luck, hang tough and SCREAM for an IV.

jbgrinch said...

good grief I hope that you get some help somewhere. I know from having a heart attack that it is no fun to not know what is causing the problem. Ill keep you in my thoughts and prayers.

jeremy

Melissa said...

There have got to be other oral surgeons that would see you eventhough your surgeries were done by another doctor.

I'm with Bud and Pax, either go to HUP or Jefferson, or if you want to go to a really top-tier hospital that isn't as far as Mayo Clinic, check out Johns Hopkins, they're at the top of all the lists and just a relatively short drive down I-95.

Seems to me you've been more than patient, and it sounds like your surgeon is just trying to shut you up, rather than address your problems. I'm not a huge fan of legal action, but it might soon be time for an inquiry from an attorney.

neilsthepoet said...

Yes,

Please do seek other opinions.

You are a unique and wonderful creature....

Do not depart early.



Neils
11:19 pm
07/28/2006

macy said...

hi jess,r u feeling any better?i feel for u from my heart because i am going through the exact same thing for 9 months i swear,i am severely depressed from all this pain that i have been living with,i have 2 little girls and i am getting to the point were i cant handle any more pain.my problems started j severe left side shoulder pain it was so severe for like 20 minutes than the next day i had a severe throat infection the doctor put me on antibiotics it got a little better but when i finished my antibiotics the throat infection started again and again and again i have been also suffering from constant left sided jaw, neck ,shoulder, chest, arm and breast pain i swear to god it is constant and i don't know what to do anymore,i have seen heaps of doctors had ct scan of head ,neck area, mri head,neck area,they checked my heart,had chest x ray had ultrasound for the swollen gland in my left neck went to a neurologist,been to the dentist for check up and x rays ect...but nobody has a answer to my pain i am sure that something is wrong because noway i would be suffering this much pain constantly if there were nothing wrong with me right? anyways now i am going to get a ultrasound for my left breast since my left breast is hurting badly too now,i am also going to a ent ear nose throat specalist next weak for my constant throat pain, i'm so scared because i know something is wrong in my body but at the same time i'm sick of this pain i would rather find out what is going on and try to enjoy the rest of my life pain free,please somebody help me if u have any idea what is causing my pain let me know im desperate for an answer pleaseeeee,and jess plz write back to me i want to know how u r doing like i said i feel for u so badly it sucks to live with pain and to keep thinking am i dying? is something spreading in my body? and to get no answers from anyone,sorry for my long comment i know this is supposed to be about jess but because we are going through the same situation i might be help to her or she might be help to me ,jess plz write back to me and let me know whats happening with u i wish u all the best god be with u.

scrumptch said...

Dear Jess,

A friend gave me your link. I have read your entire post with the history of this jaw problem.

There is no doubt in my mind that you have acute/chronic osteomyelitis of the mandible. It means your mandible bone is infected, and to the bone marrow since it is causing systemic illness - low grade fever, lymph node swelling, localized swelling, etc.

This small corner of the intersection of medicine and dentistry is completely MESSED UP. If you or anyone, were to get an infection like this - same exact symptoms, in any other bone in your body - you would be treated COMPLETELY DIFFERENTLY. An infectious disease dr. would put you on IV antibiotics, and depending on the extent of the infection - keep you on them for 2 months - sometimes more.
The problem with bone infection in the jaw, and most other bones, is that it doesn't show up on an x=ray until there is EXTENSIVE bone death FROM THE infection.

If you were on clinda. for 5 weeks before you got the bone scan, this absolutely would effect the accuracy of it. My guess is that your jaw area would have lit up as well.
an orthopedic surgeon would perform surgery as soon as he/she did a proper work up.



I am in remission from a jaw infection. I know tons about this problem and where to get some help. Please feel free to email me;

theresahb@hotmail.com