Chiari Online Support Group

Issue's with finding the right doc


#1

Hey guys!

Looking for a different neurosurgeon and neurologist in Oregon, hoping someone has info. Ok back in Feb.of 2014 I had my Suboccipital Craniectomy, Extradural Craniocervical Decompression surgery. Anyways I had a window of pure bliss (no to little pain) for about 3-4 weeks (March 2014) then I was accidentally given a bear hug and poof "pain free" went away. And slowly since then things have started to get bad again, although I have had about 3 falls down stairs in the last 6 months and things have kind of stepped up a notch (issues and frequency of issues). And since this last fall i had in mid March 2015 especially the head and neck pain have gotten even more worse (the kind that sometimes it feels as though there is a stick shoved up through my neck into the base of my brain, or every time I turn my neck side to side it sounds as though there is metal ball joint or something rubbing ...I don't know its really hard to explain, Or that again the pressure headaches are slowly coming back, all the different versions of headaches, and last but not least is this area of pain pretty substantial on the left a bit behind my ear and runs down the mid neck on the same side, oh and my skull is very sensitive like bruised.

Anyways my surgeon that did my surgery left like 5 months after my surgery, and the guy that replaced him believes that once you have surgery your healed pretty much and refuses to really listen to anything I am saying.I have to find a different neurologist he is the only "headache" neuro at OHSU and he doesn't believe in doing decompression surgeries.

Sorry this was a lot longer than I had intended. But my anxiety level goes through the roof when having to find new doctors. I have looked on some of these doctors lists on these websites and have tried some out in 2009-2011 and some just had HORRIBLE bedside manners. So if there are people in Oregon that have a neurologist /surgeons that they like and could give me info I would really appreciate it.


#2

What kind of surgery are you looking for? Once you are decompressed, you are decompressed. I wasn't aware OHSU only had one surgeon. Has Don Ross left? He has been highly recommended by members here. He left private practice in Eugene, and works between the VA and OHSU as I recall. Anyway he is a specialist in the area and well worth a shout out.

Most actual medical centers are do less surgery than the private for profit headache centers. Its becoming more apparent that there is a lot more to the symptoms than just the malformation. Restoring flow and correcting a syrinx may prevent permanent neurological damage and symptoms, it doesn't always correct the "pain" issues long tern or even short term. There is something else going on.


#3

No they have more than one surgeon, mine was Dr. Brian Ragel he is the one that left. OHSU supposedly has only one "headache" neurologist at this time that is according to my neurologist Dr. Hubard Leonard. And the reason that I am looking for another neurosurgeon is because none of my doctors like to do certain things I guess without knowing what the neurosurgeon thinks or whatever not 100% sure. Its just a question always asked. I honestly don't know what is needed anymore. I have 9 different doctors.

Also I knew when I had this surgery that it would probably only help the headaches. Dr. Ragel made sure to make sure I understood that. But I did have problems after surgery. I had pseudomeningocele up until recently, and with that the only thing I really noticed different was I was physically ill and whatnot. But since especially this last fall things have gotten almost as bad as before surgery. And i do have other DX's of other things so I understand that not everything is related to Chiari. I just get worried when my symptoms are so out of control and in some cases worse than before my surgery. All I want is these neurosurgeons and neurologist to listen and not treat me like a pain in the ass. I know that unfortunately I more than likely will never be pain or symptom free. But these days that this neck and head pain are so bad that I honestly cannot help but to think of bad thoughts. My morphine and oxycodone do not really help anymore and all I am looking for is to have some sort of relief. Anything I do anymore causes so much pain, I pray and dream of having some sort of quality of life. Sorry got way off topic of what I was originally asking.

I do have a few questions about my last MRI (which was about 5 months ago) if anyone can answer and help me understand hopefully what they mean. There were 4 different things anyways...1. I have soft tissue crowding in the foramen magnum ( I was under the impression that it would disappear after my surgery) 2. interval narrowing of the CSF space of the medullary tonsillar. 3. minimal extraaxil fluid along the inferior margin of the tonsils, 4. effacement of the pre medullary cistern.


#4

Don Ross is the man. for pure neurology, Richard Rosenbaum is a genius. You will get your answers.


#5

Thank you very much I will look into them.


#6

Hi Harmony! This post is pretty old so I assume you’ve found a neurosurgeon by now. I recently had my decompression by Dr. Cetas at OHSU and would recommend you meet with him. Wonderful chairside manner and I felt safe in his care. Sadly, my symptoms did not resolve post op, but I’m only 7 weeks out.


#7

Have you checked to see if you have hydrocephalus on the brain (water on brain)