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Got my MRI results & have doctor appt tomorrow


MightyMouse
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Hi Everyone,

my neuro's office called today to tell me that I have two herniated discs as per my MRI--but they still can't see me until mid December. They want me to go see my family doctor in the interim to make me more comfortable with some pain meds that actually WORK. I got an appointment with my gp for tomorrow at 2. I've been pretty cranky from the pain so I'm hoping she can do something!

talk to you all later, Nina

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Thanks Ladies :)

Asside from surgery, I'm thinking they might suggest physical therapy with a trial of traction. Also, there are cervical injections of steroids & lidocaine, which I've had in the past--they usually suggest that if PT doesn't relieve the symptoms.

I'm trying not to be bummed out about having 2 more bad discs--I've played this game before and didn't like it very much! (2 c-spine surgeries on the same site).

At least my gut pain backed off finally. Hoping my gp has some good meds to offer up tomorrow. Thanks for thinking nice thoughts for me :) Nina

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Nina,

I sure hope you can get on a pain med that works for you! At least now you know exactly what is causing the pain. You have every right to be cranky especially since you are always such a trooper. You have had a lot to deal with as of late. Anyway I will keep positive thoughts going for you and say a prayer that you will get relief SOON!!!!!

Beverly

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hello miss cranky,

hope you get un-cranky soon! :) you know, those drugs :)...i personally like my speed. he-he.

ugh though on the herniated disks....good grief! sometimes i wonder why we humans ever decided to walk on two legs instead of four! we would all be a lot better off with our backs!

sorry, this isn't funny, but it needed a little humor...that is my coping strategy.

let us know if you get some good drugs. :)

emily

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Nina,

I'm sorry to hear about your herniated discs. Hope you'll get something good for the pain. My PT does some kind of traction on my neck every week (since about 6 weeks now) and I do find that a relief. Hope you don't need the injections. I've had them in my lower back after coccyx surgery; they helped at first but I needed them sooner and sooner till after about 16 I had a very bad reaction in which I couldn't move for hours and had a lot of pain. Hope you REALLY don't need all of this. Wish you a painless week (or more :) ),

Corina

Oh and Emily what you said about human beings on 2 legs is exactly what my neuro said, it's not only better for the back, but also it would be a lot better for bp!!!

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Guest Julia59

Nina,

I'm so sorry to hear that. I asked about your results today on the other post you had. I should have looked down a little further in the postings----dingy me----- :)

Wow--two more herniated disks. If i'm not mistaken---you have EDS too---right?

I have been reading some interesting posts on the WACMA web site for chiari patients---and I assume there are many on that site with cervical spine issues---mainly upper cervical spine---but lower cervical spine is also a problem. There are many patients with chiari/cervical spine instability---and upper cervical spine--cranial problems who also have EDS. Now some doctors are doing a EDS workup before cervical spine or chiari surgeries.

Neurosurgeons must use great caution when dealing with EDS patients during those types of surgery because it may cause further instability.

There is going to be a study on patients with EDS and chiari---and Dr. Milhorat and Dr. Bolognese are showing interest in this area of research. The EDS was officially diagnosed by Dr. Bolognese in my case. Due to the EDS and my cervical/cranial instability/chiari he is concerned about cranial settling--AKA (my skull is dropping slowly). NOT A GOOD THING. My traction is positive---showing that this is a possible reality. Now I will be in an aspin thoracic/cervical vest for the next fase of testing.

I have read a couple of interesting abstracts on EDS/chiari related issues. The research is just beginning. Cranial settling usually only happens to people with severe rheumatoid artheritis (spelling?) in their older years. But apparently it happens to some EDS patients. The traction actually made me more unstable---even though it did help my symptoms for a short time while in traction and after traction. That is why the traction was done only for a short while. I feel like a bobble head-----------------sounds kind of funny---but really isn't.

You will definately be in my thoughts and prayers. Keep us posted.

Julie :0)

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Guest Julia59

Drs. Milhorat and Bolognese have exclusive use of Color Doppler Ultrasonography for obtaining intraoperative measurements of CSF volume and CSF flow dynamics that can indicate if a Chiari decompression surgery is successful. No one else in the world has this tool for Chiari surgery. Also Drs. Milhorat and Bolognese discovered the association of Chiari-1 Malformation and Ehlers-Danlos Syndrome, a significant comorbidity that requires alteration in the surgical protocol to prevent serious and dangerous consequences. There is no Chiari-EDS medical literature available yet, since Drs. Milhorat and Bolognese are

writing the first paper about it with cooperation from the CDCs in Atlanta, GA.

Here's part of a brief article that I read. I am still researching more information on this subject.

Julie :0)

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Nope, no rollerskating...but somehow I feel like I am anyway ;)

Julia, that is kind of freaky about the EDS issues now under investigation. I read what you wrote, but only after I postulated to my GP that the herniations are probably because EDS makes my collagen too "giving" and the discs just moved out of place. I'm also having intermittent numbness on the left side of my jaw and lower lip, left side only. I know that's not from my spine, those are cranial nerve mediated areas. Also, when they did PT with me for the herniation I had a few years ago, it sent me into the tailspin that resulted in my fusion surgery in 2002. Do let me know if you find out more about any studies out of NY or NIH--I'm only a few hours from either.

Thanks everyone for the boost today. My GP is the tops, and she came through with meds for me. I'm so much more comfortable tonight. Sticking with the hard brace, ice and drugs until my appointment with my Neuro on Dec 17. Norflex and Percocet. Ahhhh. I gave my doctor a hug before I left her office. :)

Oh, and I DID remember to ask her for miralax. Took some tonight already, so here's to having some "ignition" of my gi system sometime soon :) despite the Norflex slowing everything down a bit more.

Nina

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Oh, wow Julia, I just realized that you edited your post with the info on EDS...

as I think I've mentioned before, my orthopedic doc thinks my first graft was a failure because of EDS and the healing problems--hence the donor graft didn't integrate (or as he said "non union").

As a happy side note, mirilax is a miracle---oh, sweet relief :):);)

Okay, really, I should go to bed now. But, as some of you may recall, I get very WAKEFUL on percocet. I'll trade that gladly for the pain relief I'm presently experiencing. It's not often I get to watch Jay Leno. G'night :) Nina

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Guest Julia59

Nina,

Jay Leno-------no---David Letterman's the man.--LOL

I knew you mentioned your EDS before---I just wasn't sure. These days my brain is in such a fog. I could have looked back on posts----but I am burned out on reading all the medical information. I have two books to read--Bill Clintons-----and Angels and Demons and I can't focus on eaither one of them. And Bill's book is heavy..........LOL. Reading all the material to educate myself on all this new stuff happening to me is draining my brain.

WEll I must say----you have got more to deal with with these herniated disks added to the mix. Take things one day at a time. I'm glad you have something to relieve the pain. I take tylenol right now as I am afraid to take pain meds because I have such reactions to them. Plus my on going plugged up insides---and you know what pain meds do for that.

I'm back to being plugged up. I rack my brains wondering what did it this time. There is no ryme or reason to this-----------it's just the ANS ---chiari--cervical stenosis--------WHATEVER-------------screwing up our bowels. I ate some nuts over the Thanksgiving holiday---Walnuts! I love all nuts except cashews and those big nuts---whatever they are called. I miss my Molson ale with a side of fresh walnuts----those two just went together. When I eat nuts it usually makes things a mess for me----but sometimes I get away with it.

I sure hope there is someone who can help you with your upper spine. Do let us know what that neurologist has to say about all this. It's absolutely essential to get to the right Doc for help in that area. I don't want to try and sell you on those docs in New York----but I have done much research and have found Dr. Milhorat and Bolognese to be the most suggested Docs in the area of Chiari/cervical spine and chiari related disorders. I am also impressed in their knowledge of EDS. I'm am waiting in anticipation for their new study on this subject. The stability of one's neck is nothing to fool around with, and if EDS affects that, that is something to be taken VERY seriously. That's what these docs do---they take us very seriously.

Miralax did not work for me. I don't know why. Do you have to take it a while for it to help? Dr. Grubb prescribed it a while ago---I think last spring.

Anyway, i'm glad you at least got some relief. Nothing worse then feeling like a bowling ball is in your gut---on top of the mess you are already going through.

Take Care,

And do keep us posted.

Julie :0)

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Julie, do you know that there's a connection between cervical stenosis and slow gut motility? I'm just curious--I haven't been tested yet for the former, and I don't think I need a test for the latter! :) Thanksgiving weekend was brutal for me in that regard, and as you've probably read on another post, I'm wondering about what my own neck pain is doing to the rest of me.

thanks,

m

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Guest Julia59

I know that there can be gut involvement with chiari and cervical spine stenosis as they both affect the autonomic nervous system---and the ANS affects digestion.

stenosis + ANS dysfunction = the slow gut motility

Here are some of the symptoms listed:

SYMPTOMS:

The symptoms of Chiari or spinal cord compression may include:

Headache in the back of the head that may radiate behind the eyes and into the neck and shoulders.

Disordered eye movements, vision changes.

Dizziness, autonomic symptoms (orthostatic intolerance, NMH).

Muscle weakness.

Unsteady gait.

Cold, numbness and tingling in the extremities.

Chronic fatigue.

Tinnitis (ringing, buzzing or watery sounds in the ears).

Sleep apnea.

Speech impairment.

Hearing loss.

Gastrointestinal problems, irritable bowel syndrome, frequent urination.

Lack of gag reflex, difficulty swallowing.

Symptoms are exacerbated by exertion, and especially by leaning the head backward or coughing.

A lot of people that I have seem in the Chiari/spinal stenosis web sites have said they suffer from moderate to severe constipation and other gastrointestinol problems.

Julie :0)

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