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New findings

May 22, 2012 - 12 comments

As I sit and try to type this, the pressure in my head is almost unbearable. If I write down what's going on with me and vent my frustrations I think that may help my mental state..
I had made a call to Seattle on Sunday. I finally got in touch with a NS on call. After I told him what was going on and about the findings of my CT scan and my recurring fevers that go up to 102, he was very worried and instructed me to go to the hospital or urgent care.. He thought that perhaps a doctor in town would evaluate me and then call up to Seattle to arrange a medical transport. Although I was very reluctant because I just spent 3 days in the hospital and they did NOTHING for the swelling on my brain, I went per his orders. He was very confused as to why there was nothing done at the hospital while I was an inpatient and why they discharged me knowing I have viral meningitis, viral pharyngitis, cerebral edema, and fluid on my brain... I was told that there was nothing they could do. While I was in the hospital I was on a constant potassium/saline drip and pain meds hourly. I was never given any steroids of any kind. I did have an LP 4 days prior and they found that I have a tear in my dura in my L-spine so they did a blood patch to seal up the leak. That was very unpleasant.
Back to what I was saying..
I went to the urgent care in Vancouver and during triage the nurse was puzzled as to why I didn't go to the ED. I told her my concerns and the way I have been treated by most of the medical staff in the ED and in the hospital. She seemed a little sympathetic.. I was running a fever of 101 and my BP was 140/100 and my pulse was over 100.. I told her that I have tachycardia. She went out to get the doctor and then the doctor came in after reading my charts from my stay at the hospital. She went on to say that the ED doctor already did a CT that shows the swelling, and fluid amongst other findings that I can't remember what they are.. I will write down the radiologist findings though towards the ending of my entry. She said that I have been to the ED multiple times and asked if I have a PSYCH issue.. (you know if I had a dollar for every time a doctor asked me this, I would be stinking rich) Then she went on to say that I needed to be transported to the hospital in Vancouver and asked if I wanted to be transported via ambulance which I refused. She left the room and I burst into tears. You know, I should be used to being treated this way by now.. I guess people forget that I have feelings too. The nurse came in and was astounded to see me bawling my eyeballs out. She asked what was wrong, so I told her. She told me that somewhere in my medical file it was mentioned that I possibly had a PSYCH issue and was simply asking me if it were true. I told her that it was untrue and I was tired of hearing these things from medical personnel. She told me that I shouldn't let other people upset me so much. Then the doctor came in and made a frowny face because I was bawling. She said that she reviewed my CT and she believes I needed to be transported to ED for MRI. She hands me an envelope and tells me not to open it and to give it to the nurse at hospital. I leave and guess what.. I opened the envelope. She states that I have been to the ED multiple times and I deny any PSYCH issues, and I am acting very "normal" for having the worse HA ever. HOW WAS I ACTING NORMAL? I was literally bawling my eyeballs out not only because I was offended by the way I was treated, but because the pressure in my skull is almost unbearable!!!! I ended up NOT going to the ED. I think I am regretting that right now. I think I am going to call Seattle again since it is a weekday to talk to a nurse.
I made an appt with the medical records lady so I could take notes while reading my medical record. I have had a gut feeling that there was something defaming in my file for doctors to treat me the way they do. Low and behold.. I found several things that went against my true character. One doctor even commented on my "several tattoos on my upper body and back" WTH does that HAVE ANYTHING TO DO WITH MY HEALTH?
I know there is something wrong with me. This is my body. As of right now, the pressure in the back of my head is so severe that it is making me feel nauseated. My legs keep going numb for a short period of time and am having doubled vision. Just called Seattle and the operator put in an urgent message to the advice nurse so I should be hearing back from her soon. I anticipate that she will tell me to go to the hospital. There is something in my medical file stating that I have "drug seeking behavior" That hurts my heart a lot. I never seek drugs. I seek treatment or relief of my pain. Now I have swelling in my brain and I am too afraid to go to the hospital to be evaluated. How PATHETIC. I had a follow up with my PCP on my birthday.. Which was on May 18. I asked him for a new referral to a neurologist. He said that there is nothing anyone could do for me, and a neurologist would not be able to do anything for me. He told me that I was foolish for proceeding with the decompression surgery because the NS in Vancouver said that I didn't need it. He told me that he is not going to continue to give me any pain relieving meds and that I am going to have to live with this pain for the rest of my life. I have asked him on several occasions to refer me to pain management. He thinks it is unnecessary because I have chronic pain.. I should join a support group and exercise. He said there is no quick fix for me.. I just said.. No sh..it! I have been dealing with this pain for 3 years now.. I know better than anyone that there is no quick fix!!! I don't think asking for the referrals to a neuro and pain management was unreasonable. I think I am going to consider seeking a new doctor who may be more open minded to helping me manage my pain, refer me to a neuro and an endocrinologist. My thyroid tumors have grown in size and now I have something called shotty cervical adenopathy. I think that is when the lymph nodes in the neck are swollen.. I read that it could be from cancer. I was told there was some change in my suboccupital bone as well as something called sulcal effacement that represents edema. I think that means that there is swelling to a specific area of my brain. With the pressure mainly being in the back of my head where the surgery was done, I would assume that is where the swelling is. My right arm is beginning to ache.. Feels almost bruised down to the bone. I will copy the radiologist report later. I am going to wait to hear back from the advice nurse from Harborview.

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Avatar universal
by Londres70, May 22, 2012
What a CROCK dear.  I feel for you.  Urgent care is definitely out of the scope of help for you.  

You don't need to take notes from your medical record; just ask for a COPY of your medical record (s).  Keep a file at home of ALL your medical records.  They are YOURS and you are ENTITLED to copies by law dear.  Note the physicians documenting all this BULL about you and cut all ties with them if possible.  Plus, LEGALLY they have to have a PSYCH EVAL on record stating that you are indeed PSYCH.  Plus, this ALLEGED "drug-seeking" has to be WELL documented; that's one that can be difficult to prove as pain is subjective.  Once this BS is in your chart other doctors MAY follow suit unfortunately.  Sounds like you are being judged as well because of your tattoos.  What a shame.  

Time to "clean" house.  DUMP the PCP; what an A S S.  Can Dr E. recommend anyone or refer you to them (Pain Management, Neuro and Endo)?

As far as your treatment at these hospitals/urgent care.......WRITE A LETTER TO THE ADMINISTRATION ABOUT YOUR VISITS.  (as soon as you are better of course)   Alot of hopsitals also have an Ethics committee that views these kinds of situations.  I would look into that too.  LET YOUR VOICE BE HEARD.  

I sure hate you are going through all this.  Ask around in the Chiari forum for advice and recommendations in regards to this too.  

This makes me SICK to my stomach.  I am so sick of this "some-called" people calling themselves doctors and refusing to give patients PROPER AND DECENT care.  

What's Harborview?  Another hospital?  



1968463 tn?1374757813
by Rahe28, May 22, 2012
Oh my sweet Krystal !!!! How I wish you lived here !!! Even the worst hospital does not treat people the way that you have been treated !!!! I am just dang MAD !!!! I bet if you looked I have steam coming from my ears !!!!! I just got back from my pre-op....now keepo in mind that I am going to a hospital that accepts medicaid and also is a teaching hospital. Tulane University hospital !!! They were so unbelievably kind. They catered to my daughter and I's every wim including hunger and thirst, and turns out that this is standard. They also have no problem if you have a child with you to help you and tend to your child. They were so nice, and it just angers me sooooo much to hear someone in pain due ot absolute poor care !!!!! How dare they ! Why...when there is proof in black and white are they not taking you seriously?????/ Any you are right....what does a tattoo or ten have anything to do with your medical care?? The nurses today thought my tongue peircing and tatoos were neat and actually called another nurse to check it out. I am just so fumming at the lack of respect toward you as a person all together...more less a person in need of medical attention !! I am soooo sorry...I know that the last thing you need is someone yelling about this....It just upsets me so much to see a sister  chiarian struggling so much. My whole family has added you their nightly prayers...and my kiddos always ask if there is an update on you when they come home from school. My son Logan just wanted me to tell you that he prays for you all the time and that if you want a tatoo you should have how ever many you want and hospital should still take care of you. He is such a sweetheart. Anyway...I Just want you to know that I am constantly wishing for you to recieve better health and better care . Best wishes my friend...<3 Rahe

Avatar universal
by deadmemory, May 22, 2012
I looked into receiving my medical records and they charge over one dollar for one page. All together it will cost me over 400 dollars that I do not have. My medical insurance company has limited me to this particular PCP and he dictates all of my care. Dr. E would not be allowed to refer me to pain management or to a neuro or endo. I will write that letter to the hospital administrator, that is a great idea, L thank you! Harborview is indeed a different hospital. It is located in Seattle, WA.. 3 hours by car up north from where I live. It is where I had my surgery. Yes, I do need to get rid of my current PCP. I was shocked by his bedside manner as he has always treated me with dignity and respect until quite recently. Yes, I have had multiple visits to the ER because my health concerns are never addressed. I don't want to mess around when it comes to my brain and spine. Now, unfortunately I am too afraid to go to the hospital now because of the way I have been treated. I don't know what to do anymore. One doc says I am a pleasant young woman, and another says that I got "enraged" when I was told I wasn't going to get Vicodin. This has never happened. Vicodin doesn't even help my level of pain anyways so that accusation is totally outrageous.
I can't even go to the other hospital in Vancouver because I am to go to this particular hospital that has been mistreating me. I tried awhile back and they just sent me away. I do not want to set up another appt. with my PCP because of obvious reasons. I am very concerned about the brain edema findings. It is even more concerning because of how my head feels. I feel like I am on a hamster wheel, running and running and going nowhere. I am never mean or condescending or vicious to medical staff when I do go for an eval but because of my kind demeanor, it is being perceived like I am faking, because I am acting "normal" I guess I am going to have to act like an irrational b-tch and take my pain and frustrations on the nurse and docs because then MAYBE they will think that is not acting NORMAL. GEEZ, I despise feeling bitter and volatile. This is not my nature. I don't think I can ever be mean to a nurse or doctor despite everything that has been said against me. I am upsetting myself...
Thanks for the advice L, you're amazing

Avatar universal
by deadmemory, May 22, 2012
Thanks, Rahe.. Your kind words and the sweet words from your children and family have touched my heart and made my eyes leak!

Avatar universal
by Londres70, May 22, 2012
Rahe, you are a super sweet person.  

Sounds like Tulane is the place to be.  I know Tulane is known as a "top-notch" University.  

Avatar universal
by Londres70, May 22, 2012
Thanks dear, only trying to help a friend.  :<)))

Is there any way to appeal to the insurance company about having this PCP managing your care?  I would include the part he REFUSES to refer you to any specialties and he is refusing to address your pain issues.  He is the ONLY one that you can see?  That's nuts.  

Well....take notes and especially document all the physicians who documented that BS in your medical record and STEER clear of them.  

I am so hoping and praying this nurse calls you back from the other hospital and you get the help you NEED AND DESERVE.  Hopefully, you can get off the "hamster wheel" soon.  

Well, the PCP probably is pissed that you went against his advice and had the surgery.......my response......it is YOUR body and you can MAKE whatever decision you want in regards to your body.  To withhold pain meds........that's lower than low.  It is like he is telling you to "get lost."  Hey, can he discharge you from his practice and then can you be reassigned someone else?  Sounds like he doesn't want to deal with you any more because you had this surgery.  I would talk with your insurance company about that directly and/or send them a formal letter pertaining to your concerns/problems.  

Then, Dr. E is on vacation......GEEZ!

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by specialmom, May 22, 2012
This sounds awful!  What I find most outrageous is a comment about your tattoos.  Ugh.  

I will say a prayer that you get the care and help you need.  Peace and may you feel better soon.

1968463 tn?1374757813
by Rahe28, May 22, 2012
Oh, it's no problem sweetie! They make my eyes leak too :) My daughter told the OR nurse today that she was going to take care of me after they do my suyrhegry. She would bring me trees (brocollli~ my fav) and lots of flowers and coffee...lol. She is only ...but you would swear she is at least  talking to her. I am hoping that the nurse ca;lls you back and starts to get something done. I know seattle is hrs from you ...but at this point I really hope that if they say go...that you do. I would definitely make sure and write the  hospital like londres was saying . Someone definitley needs to be spoken to about their utter respect for human compassion and need. There has tobe abother PCP that you can see. Call your insurance...because as londres says it does sound like he doesn't want ot deal with you anymore.

Tulane is so wonderful. to be honsest I had no idea they were so amazing. I will continue to seek medical help from then whenever needed for my children and I. I got a   patient directory today so that my friends and famly  would know how to navigate the hospital. I really wish there was something I could do for you krystal....being so far makes it so hard to support each other.

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by selmaS, May 22, 2012

Krystal,
First- Happy Belated Birthday!...I know it was not the one u wanted...and I am so sorry u r in pain, so I am sending prayers for ur next Birthday to be pain free : )

I just do not understand what ur NS is waiting on....y hasn't he told u to come up there for treatment or at the least for him to check u over? Ignore all the ignorant staff that has no idea what chiarians go thru pre and post op....I feel there is no place for  them to have a job when they have no compassion and say such things, I wonder how ne 1 of them would do in our shoes.

Rest up and try to relax the best u can....

1006035 tn?1485575897
by skepticalpeach, May 22, 2012
How terrible! You should consider seeking help from the Mayo Clinic in Rochester, MN. They are very good and world renowned. It sounds like what us endometriosis sufferers have gone through for years..."it's all in your head, you're imagining it." Fire them and get someone else!

1006035 tn?1485575897
by skepticalpeach, May 22, 2012
Also, might I suggest taking someone else along with you to all of your appointments? Doctors take you more seriously when you have someone else by your side.

Avatar universal
by nsalem656, May 23, 2012
I have a suggestion on the pcp front. Insurance companies let you see genocologists without referrals usually and let the geno send you to who ever you need to see. I think your better off with an obgyn then the pcp you have now.

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