Thank for this forum and taking the time to answer my question.
I am a 31 year old white female from the northeastern US. I do not drink or smoke. I work in an office-type setting and I am in too much pain to exercise regularly.
Since I fell on the ice four times in February of 2005, I developed back pain. Though this went away through physical therapy, I developed left-sided headaches in or around April of 2005. In the November 2005, it spread to my neck and shoulder. This prompted me to seek physical therapy, which consisted of various exercises, and only made the problem worse.
On 26 Aug 2008, I had a total parotidectomy due to a 5 cm deep lobe tumor. After the sugery pain subsided, I was free from the head/neck/shoulder pain for about a month.
Since then, the pain has gotten worse, however two additional locations have started to hurt. It is now on the side of my head (between my eye and ear) and deep in my neck. It has accelerated to a boiling point, much like it did right before I was referred to the ENT who performed my surgery. I feel like my body is trying to tell me something. I have the pain all day; morning, noon and night. It makes me nauseous, and today I had virtually no appetite.
I have tried Tylenol, Advil and Advil PM. At this point, they are all barely touching the pain. I am now trying Naproxen and it isn't working too well. I tried hot and cold compresses; they only aggravated the pain! I missed some work this week due to the pain, and last night, I only got one or two hours of sleep because of it.
I've had other scary symptoms, like a short bout of amnesia (this week), a near fainting spell (a month ago), tons of confusion, and other annoying symptoms, like difficulty with word-finding, concentration, and speaking. It wakes me up sometimes, too.
I saw my PCP on Monday and she referred me to a Neurologist. My appt was supposed to be next week, but my problems were so severe that I called the office to see if I could get in sooner. I had an appt. today. This is what he had to say:
He wrongly assumed that I was diabetic because I was obese and take Metformin. (I take it for Polycystic Ovary Syndrome). He advised me that the headaches were caused by a number of factors; mainly the blood sugar issues (which I do not have; all my blood sugar tests have come up normal), my psychiatric issues (I have Aspberger's Syndrome), my weight and all the meds I take (Abilify, Topamax, Lexapro, Metformin and Simvastatin). What really surprised me is that he had his mind made up before he even examined me!
The examination consisted of mostly reflex tests of the arms and legs, and two or three short neurological examinations that one of my previous PCPs had performed on me. He never palpated my head or neck.
He also didn't order any tests, saying that the tests would not add anything, because he found nothing in the examinations he performed.
I feel disappointed. My questions to you are: Should I get a second opinion? If so, what are some possibilities it could be? I feel like I was given the "run-around", but then again, I'm no doctor and I didn't know what to expect.
Thank you again for your time.
I must apologize. I posted this in the wrong forum. I am new to the site and didn't realise that I was in the peer support forum, versus the "Ask a Dr." forum.
Please remove my post. Thank you.
Definitely get a second opinion! This doctor doesn't even sound like he/she is even listening to your issues at hand.
If you are in that much pain, no over the counter meds are going to be able to give you any kind of relief; you are going to have to find a doctor that can give you some reason pain relief so that you can get back into somewhat of a normal sleep pattern, and possibly eliminate the confusion, amnesia, and concentration issues which could very well be caused by the sleep deprevation.
Next, I would highly recommend getting a head MRI to make sure that there isn't something else causing that pain you described between your eye and ear. I would tackle these issues as soon as possible. I am not a doctor, but this is ny personal advice after reading your post. Please post back you findings,
Thank you for your help. Anyone feel free to chime in with ideas, etc.
I admit I was confused when I first posted here, as I did not realise that this site was split into two types of forums. I am usually good at navigating the web (heck, I design web pages freelance), however my pain-related confusion has spilled over to this site! :(
I am meeting with my PCP on Monday morning to let her know what happened, and to ask her for a new specialist.
Thank you again!
I saw my PCP today and told her what happened. I then asked her about seeing a different neuro, as well as the possibility of myofascial pain (I came across this possibility online).
She advised me that my symptoms "don't fit the pattern of myofascial pain". She asked if I was still having muscle twitches/spasms in my left arm, and I told her "yes." She also pressed down on the lymph nodes of my neck and had me bite down, and open up.
She said something about it not being "cluster headaches" because I have had headaches for four years, and they have gotten worse in the past two weeks. She also said that it was not a "temporal" somethingorother and I do not recall why...I'm not 100% sure, but I think she also ruled these both out because the pain is one-sided.
After examining me, she decided to refer me to another neuro. The ladies in the office faxed my chart over and now it's a waiting game. I was told that I would not receive an appt. this week, as it takes that long to get set up in their system.
At least I am heading in the right direction. I told a few people about this doctor and they said good things about him.
Add another symptom to my list: sleep paralysis. I kept waking up scared and paralyzed last night. Also: I would start to fall asleep, and as soon as I would, I would feel scared. The slightest noise would scare the daylights out of me and wake me if I started to sleep, too.
I eventually fell asleep, but it took forever!
I *never* had SP before, save for one or two scant occasions.
Today I tried different things to see if the pain would come/go away.
I noticed that: Drinking cold drinks brought on the pain a little bit. Listening to music through headphones brought on the pain quite a lot. The latter could have been a coincidence, as it was late in the workday when I listened to it. I put down the music as soon as the pain kicked in. I still have the pain now, although it's wearing off a bit.
My point: I think the pain may be sensitive to sound.
Perhaps another tumor has grown, like the other one did, only in another place, and it's causing your symptoms. As for your headache going away right after your surgery, that may have been due to the medications you might have been taking just following the procedure. I think you should have a CAT scan of your brain AND your neck (the cervical spine). This is because there's a chance when you fell on the ice and you had back pain, the physical therapy was not enough to rid yourself of whatever caused that.
Even tho this is not the ENT problem you had before, I think I'd go back and see that surgeon... he did good for you before, and he just might have a clue about what's happening now. In the meantime, in case it is not a tumor, but rather your neck muscles wrenched somehow, then go to a professional massage therapist a couple times a week and have them work on your shoulder muscles... sort of like the physical therapy you had before that helped you.
By the way, those sleep difficulties have to do with your weight... I gained a bunch of weight a couple years ago and had the same thing, and sometimes when I get a cold it happens. This is from the airway being compressed. So, I sleep with an extra pillow, but could be you might also benefit from using one of those positive airway masks a few times a week.
Please get a CAT scan, and if you have to do it through a neurologist, simply go to a different one than the last guy you went to, and BE SURE to tell them verbally (records are sometimes incomplete) about your falling on the ice and your tumor that was removed, because I think those may be the keys to what is happening to you.
Thank you for your response!
I will be sure to tell the new neurologist about the falls and the tumour. I am still waiting for the referral to come in the mail (I was told it won't be this week).
I saw the ENT who performed my surgery a few times afterward about the pain and he basically wanted to throw pills at me. He said that the tumour he removed cannot come back so quickly, and gave me no insight into what could be causing the pain.
I hear what you're saying about the tumour coming back in a different spot. If it did, then it was out of my ENT's range of specialty and would explain why he was hesitant to explore further.
Thank you for the sleep info. FYI: I had a sleep study done last summer and they found no sign of sleep apnea. I still wonder if something else is going on sleep-related...I haven't had that problem since that one night...I have been sleeping better these past few nights...hopefully it will last. :)
I had a CT scan of my head and neck when they looked for the tumour back on 1 Aug 08. They only found the one tumour (the one they removed). Perhaps something else has grown since then???
I still have not gotten the referral in the mail yet.
Today, I had to go home early from work due to the pain and fatigue. :( It was so bad I could not concentrate. Not only do I feel the head/neck/shoulder pains, but I feel intense pressure in my head as well.
I must also add that I feel these sensations that I can only describe as a "watery" feeling, as if fluid is flowing through certain parts of my head. It usually occurs in the area of the pain, and usually right before / after pain occurs.
I also feel pain/pressure in and behind my eyes (mostly my left one). It also itches and burns. I think I have had this for awhile, but only started noticing it recently.
I am going to go lie down. Any and all feedback is appreciated.
Thanking you in advance,
I went to the eye doctor today.
I explained to her about the pain I have been having. She ruled out glaucoma and uveitis. She said that my visual field was normal and so was the pressure in my eyes. In fact, my eyeglass prescription did not change since my last visit, almost two years ago.
She concluded that my eyes were not the source of the problem.
No clues still as to what is wrong with me, but at least some things were ruled out. I guess I will keep on keepin' on.
I'm glad you're going to the neuro, sorry it will take so long to get in there. Ask him to also look at the scans in regards to your fall on the ice, to look for possibly a pinched nerve or fractured bone or torn tendons and ligaments, just to make sure it's not a spinal problem that was missed, since you report back pain.
While you're waiting to see the neuro, when you're in a drugstore that has those blood pressure machine booths, see what yours is, should be 120/80 or lower. If it's a lot higher on either number, it could be your symptoms are caused by high blood pressure, because that can make your head hurt.
I hope you will also have your shoulders rubbed out by a massage therapist for about four visits or so, as I had told you before, just in case it's wrenched muscles from your fall. It's such a simple and inexpensive thing to have done, but it may really make you feel a whole lot better, I hope.
I might suggest, too, that whomever prescribed the Lexapro to you, see will they prescribe you the EQUAL dose of Zoloft instead, and then maybe ask if you can then drop the Zoloft dose gradually (1/4 pill per week) to around a max of 150mg. The reason I say this is because I had a bad reaction to Lexapro, so it's just a suggestion that you can talk over with your prescribing doc. Also, the side effects and interactions of all your medicines should be reviewed next time you visit your family physician. And I really think you should be receiving MUCH better medication for your pain.
By the way, since the ENT said that tumor won't recur, I may be wrong about what I said before on that issue. But I think your fall on the ice has at least got SOMEthing to do with all this, and it may have created some sort of abnormality in your brain, so that's what the neuro is for, I believe, to check into that sort of thing. Plus the neuro can explore the idea I mentioned earlier in this post about maybe you tore up your spine somehow. I'm really just guessing now, so I'll leave this be. Let us know, tho, how your neuro visit turns out and how you're doing, if you return here.
HI...I am not sure if u mentioned it already as this is an active thread.
Have u had a recent MRI of ur brain w/wo contrast?
The reason I ask is bcuz it is possible for a condition to occur after an injury like urs.
Sometimes it is considered congenital, but is dormant and is triggered by a fall.
I pray u do not have this, but it is worth it to rule it out.
Thank you both you for your advice.
I was on Zoloft a long time ago, and eventually it stopped working for my depression.
I had my BP checked when I went to my PCP last week, and my readings were considerdered "normal"; a little below the figures metioned above.
I am getting a massage on Tuesday. A massage therapist is coming to my employer and I will have her work on the problem areas. Thank you for that suggestion :)
Selma: I have not had an MRI. What condition are you referring to? I am curious now.
Thank you all again!
Mom brought me to see her chiropractor today. He examined me and ordered X-rays.
Through his examination using a heat-sensing tool, he found several areas of inflammation in my neck, in the left shoulder blade and in the lower part of my spine.
Since I already had X-rays of my neck (cervical spine), I will have the rest of my spine done. He is having me go to the X-ray center tomorrow after work, and bring all the films to my appt with him at 5:30.
After reviewing the films, he will be able to determine if he can help me or not.
He advised me that problems in the spine can cause problems in the neck/head/shoulder, and that complaints like mine are very common. I am going to keep an open mind and weigh all options, both pro and con. I am not going to put all my eggs in one basket. (I am also going to my dentist in a few days to rule out anything teeth-related.)
I hope and pray that the chiropractor can help me. I am certainly willing to give him a shot! Anything to relieve the pain is worth it!
I am still waiting for the referral to come in the mail for the neurologist. If it does not arrive by tomorrow, I will give my PCP a call. I still want to make sure that nothing is wrong upstairs. :-)
I just got back from the chiropractor a little while ago.
He looked @ my X-Rays for about 20 minutes and examined me again.
We went over the X-rays together. He found a few vertebrae a little out of whack, as well as some slight scoliosis. My neck was off center as well (big surprise).
He ended up adjusting me at T1 and one of the lumbar vertebrae (I forget which).
I feel like I can turn my neck and head a little better already. However, I am still having most of the same symptoms, as well as pain that comes and goes in some new areas (like below the rib cage on both sides). I guess I will give it some time.
I still did not receive that darned referral in the mail. I guess I will call my PCP tomorrow. I think it is wise to make sure that my brain is not affected by these falls.
You said a massage therapist was coming to your place of work Tuesday (yesterday). I am wondering if it felt good and if it helped a little with your symptoms. I think you should visit that one, if you liked them, again and again, get all the muscles worked out. This is especially important since your chiropractor found some problems with your cervical spine, and he reiterated what I had been saying, that you may have wrenched that area up when you fell. I have a problem with my back and pain radiates into my legs, and I got to where I could barely walk. I went to a "deep massage" therapist, and after just two visits, I was able to walk normally again. So, that's why I keep harping on this. One massage may not "do it." Let me know how all that went and what you might do concerning getting more massage treatments.
I just wanted to let you know that I saw the neuro on Wed.
I detailed it all in my journal. In addition to eye pain, I have been having other eye-related symptoms that I thought were normal all my life. Boy am I glad I told the doc about them!
Refer to my journal for the update!
I went to a massage therapist twice and it made me feel worse!
The chiro is making a little bit of a difference, but it could also be coincidental because I lost some weight. Weight loss is a treatment for IIH, the condition my neuro thinks I have.
I still think my problem is two-fold; IIH and some slight spine problems. I'll continue to go to the chiro unless I am advised by the neuro not to.
Another update: Please see my journal for details.