Hi! New Member, same old story...ish LOL

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Hi! New Member, same old story...ish LOL

Postby Silverwolf73 » Tue Jun 19, 2007 12:14 pm

Good afternoon!

I'd like to take a minute (or two, or three) to introduce myself and share my story. To save a bit of time, you can refer to mac's post...I'm the author.

http://asap.org/forum/viewtopic.php?p=2 ... ight=#2816

I guess I can enlighten you on the "issues down the road" statement. I continue to have downbeat nystagmus, minor gait disturbance, mild tinnitis, and vertigo. This is residual from the Chiari and has not changed since the surgery.

From then until now, I've developed visual disturbances that my neurosurgeon and opthalmologist can't explain. There is "no good reason" for them, but here they are...

Sixth nerve palsy-when I look either right or left of midline, the eye muscles try to force my eyes back to center, resulting in jerky, patternless movements that cause instant eyestrain headaches.

Photophobia-cannot tolerate well-lit areas. I wear sunglasses outside (except on cloudy days or at night) and in business buildings (flourescent lights are the worst.).

Visual Snow-This is hard to explain. You know what a TV with static looks like, mostly white with black flecks? Reverse that so it's mostly black with white flecks. That's what I see when I close my eyes. When I open them, this "net" is superimposed over what I'm trying to look at. It's not really white, per se, but more like pinkish green. Like when you look at a lightbulb and then look away...the imprint changes color depending on the background it's on.

Put these in combination with the downbeat nystagmus and fourth nerve palsy (misaligned eyes that cause double vision) and I'm just a mess. To my knowledge, there is no condition or syndrome that covers all this. It's just a combination of very complex ocular issues, and not one of them can be fixed entirely.

Okay, the visual stuff is hard to live with, but I was adapting pretty well (short of not being able to find a job. I'm a stay at home mom that just got denied disability for the second time...).

BUT...about two months ago, things started to go downhill fast. I discovered a bloody discharge during a breast self-exam. Cytology showed abnormal cells, so a ductal dissection was scheduled.

HOWEVER...between the preop exam and the procedure, I developed some new symptoms...numb hands, stiff muscles (all over upon waking, fingers all day), muscle fatigue with minor exertion, bladder problems (incontinence with sneezing, urgency, inability to fully empty), and bowel issues (urgency, constipation). This was enough to make the anesthesiologist take pause until we found the cause. I had a full spinal MRI that showed low lying cerebellar tonsils, mild spondylotic ridge formation in c4-c6, mild thoracic dextroscoliosis, and mild lumbar facet arthritis. The anesthesiologist still wasn't satisfied, so he called my NS and spoke with him personally. They decided to do the procedure with sedation and local anesthetics. This was done yesterday, and I get the biopsy results Thursday or Friday.

Now...about my symptoms...now that I got the dissection out of the way, I can concentrate on my new issues (providing it's not malignant). Since my NS said I need to see my neurologist about them, I'm basically starting over. I'm not going to mess around this time. If there's any humanly possible way, I'm going to New York to TCI. I've done quite a bit of research, and I'm thinking my problems are either being caused by an overagressive craniectomy or I have an OTFT (occult tethered cord).

So, for now, I'm once again in a holding pattern. I'm a veteran in some ways, and a newbie in others. I'm sure I'll get help and support from you guys, and I'll give it when I'm able.

God Bless you ALL!

Renee in Ohio

October, 2003-Suboccipital craniectomy, laminectomy of c1 and c2
Continuing visual disturbances
New onset of neurological symptoms
Waiting for Breast Cancer biopsy results
Trying to get to TCI
Praying to God every day
Living life in the meantime... :wink:
Last edited by Silverwolf73 on Tue Jun 19, 2007 9:23 pm, edited 1 time in total.

Postby Gracie Rose » Tue Jun 19, 2007 1:19 pm


You sure are dealing with a lot!! I have had many of your symptoms and some of them Dr. B told me they just don't know why they are present and don't know why they can disappear after surgery.

I am a TCI patient, and there are ways to get you there. Have you heard of Wishes and Rainbows? It's a foundation of sorts that helps those with your issues. There is help out there. TCI does more "re-do's" than first time surgeries so you'd be in good hands there.

You sure do sound like a tethered cord patient. I had the same issues and they are gone now. I also had the decompression and fusion as our family has EDS. You are fortunate to have that anesthesiologist on your side.

I too am a stay at home Mom which brings on a whole set of emotional issues. You are welcome to email me and complain!!!!

Our family will keep you in our prayers with the multiple symptoms and situations you are coping with.

Lisa in WA
Gracie Rose
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Joined: Wed May 30, 2007 1:02 am

Postby WeeLassie » Tue Jun 19, 2007 7:10 pm

Renee - I read this post of yours from CCI which was reprinted here via Mac.


Then I read your current post above and I have to say I am thoroughly confused. Are you saying the decompression surgery was a success and these other multiple symptoms you have listed above are not directly related to the CM or the decompression? There is an incredible difference between the two posts and I have to admit that I just don't get it. :?
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Postby Silverwolf73 » Tue Jun 19, 2007 9:19 pm

I'm sorry for the confusion...

The first post (from CCI) was strictly about the decompression surgery I had in 2003. It was considered successful, and my symptoms were greatly improved. I just wanted to share MY experience on the operating table for anyone that's decided to have the surgery, but have no idea what to expect. I just put what I felt into words.

This recent set of symptoms, both neurological and visual disturbances, have yet to be explained. Hence, the need for a trip to TCI. My neurosurgeon has passed me back to a neurologist because "There's nothing more that I can do with surgery; there's nothing to fix." I'm starting my neurological journey once again.This is what I meant by "issues down the road".

Was the decompression successful? Yes.
Would I do it again? In a heartbeat. But at TCI rather than locally.
Are the symptoms I'm faced with now related to the decompression surgery? Probably not.
More than likely, they are caused by a tethered cord, judging by my symptoms. There is a possibility that too much skull was removed, but I doubt that would have waited this long to become apparant. I don't know; I'm not a doctor.

All in all, I had a good experience with surgery. I'm just having more symptoms that haven't been nailed down yet. I'm sorry this seemed confusing to you.


Renee in Ohio

breast surgery

Postby razzle51 » Wed Jun 20, 2007 7:26 am

I read that you had breast surgery yesterday and you are doing well . Take care
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby hayla2 » Wed Jun 20, 2007 7:51 am

Lordy, Renee! You don't need any more. I will definitely pray for you. Hang in there. Melissa
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Joined: Wed May 16, 2007 6:37 pm

Biopsy Results

Postby Silverwolf73 » Wed Jun 27, 2007 8:00 pm

Well, I got the results of the biopsy. The specimen was forwarded to the Mayo clinic, so that's why it's taken so long. They're still running tests to see exactly what it is. They've got it narrowed down to one of two types of pre-invasive cancer. This means it's not cancer yet, but if it is not removed completely, it will probably become malignant. I'm being referred to the Breast Cancer Center at the Cleveland Clinic so my Chiari-related anesthesia issues can be handled appropriately during surgery.
Once this is taken care of, and I'm fully recovered (which could be a while), I will once again try to make my way to TCI. One day, one challenge, one blessing at a time.


Postby mac » Wed Jun 27, 2007 8:57 pm

Renee, I'm glad you came on over here!! I didn't see your post til now. I get confused on this new board we have and don't know what I've read and what I haven't! And I don't have the eye issues you have!

Well, enough exclamation marks. I'm glad WL asked the question b/c I was confused, too, but now it makes sense. I'm glad you don't have full blown breast cancer, that at least is some good news. But sorry you have to have the surgery to remove the lump. Are you talking lumpectomy or mastectomy? I hope the former...

I was just diagnosed with a pre cancerous condition as well (precondition to multiple myeloma.)...my situation will require monitoring and possibly upcoming bone marrow biopsy. I know perhaps a little bit of what you are feeling...it's good news on the one hand, but it's tough news on the other. The good thing is that your specimen went to such good experts and you are in good hands. Keep us posted on how things go, okay??

Sure glad you are here! You have a lot to offer and another fresh perspective. Welcome to the club no one wants to belong to! :lol:


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