Help Me Please!!!

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Help Me Please!!!

Postby letmegethemdigits » Tue Sep 20, 2011 3:52 am

Hey there! I am in need of some help! I am not quite sure what to do or where to go from where I am at.

So here is my history:

Starting back at the end of May this year I had a migraine that sent me home from work early. It kept me out of work for 3 more days and I ended up in the hospital on June 3rd because the pain was so bad. They did LP and a CT of the brain. About 8 hours later while relaxing in the hospital bed with my legs elevated all the way they began to feel funny. I immediately lowered them all the way and 15 mins later I couldn't feel or move my legs. When they came in and checked it out I also had no reflexes and no feeling. They had an emergency MRI done of my entire spine. The next morning I could move my legs very little but with extreme amounts of pain. (before this happened I was on my feet 10 hours a day at work). When they came in to tell me what they saw on the MRI they said that there was nothing found, that they saw a spot on the spine but that it was nothing and they see them all the time and its just something that sometimes appears when a MRI is done. They said on June 7th that the believed I had Conversion Disorder. They had a psychologist come in and talk to me and the next day they said that it was conversion disorder and I should follow up with my primary care doctor. I was released from the hospital on June 8th. When I left the hospital I could walk with a walker but it was very painful. Within about 4 days my conditioned severely declined. I was to the point of barely being able to walk even with the walker. To this day despite physical therapy I have only taken 2 steps without a walker, use a walker around the house but for no more than about 15 feet other than that I am in a wheelchair. My legs are in constant pain and are very weak. They are often times very cold, however I can not feel it when they are. I also cannot stand when my legs get cold, they hurt very bad when this happens. I have also had muscle spasms and twitches that seem to be getting worse. My arms and wrists and shoulders also hurt all the time, however, I am not sure if that is because I am in a wheelchair and often times push myself. I have also had a headache since May 30th that has never gone away and 12 migraines since all of this started (I used to have 2-3/year before all of this)
After going from one doctor to the next I was getting very upset with them not doing anything and insisting that this was all in my head and psychological after 3 days, so my mom and I decided that it would be a good idea to request all of my records and images. In doing so I read in the report from the radiologist that I had a syrinx in my cervical spine. It is 8X2.3X2.4mm starting between C-5 and C-6. I decided that it would be a good idea to have a radiologist outside of Kaiser look at my images and it turns out my mom had a co-worker that has a retired radiologist for a father and specialized in brain and spine MRI. He agreed to look at my images first without my records and said that yes it was a syrinx and I should have been told right away about it. I also found that the psychologist who saw me in the hospital said conversion disorder was very unlikely, but when I left the hospital the next day, that was their diagnosis. A psychologist I saw 2 times in the past 7 weeks also said he didn't think it was conversion disorder and I was within reason to get tested further to find anything else that could be going on.
I have yet to see my primary care doctor since the outside radiologist saw my images because she has made it clear she is unwilling to help. The neurologist I saw in the beginning contacted me a few days ago per my request from a referral from the ER after her refused to see me yet again. He admitted that what I was told in the hospital I shouldn't have been told and I should have been informed about the syrinx but that since it is small it is not causing it and to follow up with psychology. I am planning on getting a patient advocate and file a grievance.

So my questions are:

What all should I ask to be done?
In researching SM I have found so many symptoms fit what I am going through, however is it possible that it could be causing what I am going through?
Also before I found out about the syrinx I was seeing a chiropractor (about 15 times) and went to Disneyland and rode just about every roller coaster there, could that have made it worse?

If you have any other tips or suggestions, I am more than open to them!!!!
I live near Sacramento, Ca and have Kaiser, If you have any doctor suggestions, I am also open to that!!

Thank you so very very much!!!!

(sorry it's a little long)
letmegethemdigits
 
Posts: 6
Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca

Re: Help Me Please!!!

Postby birdlover3 » Tue Sep 27, 2011 9:38 am

Poor you.

The only advice I can give you is to find a good neurosurgeon. My neurologist said my 8 mm cm wasn't long enough to cause my problems & that my sm was too small & that I didn't need to see a NS. Thankfully, another doctor sent me to a NS after he looked at my MRI films. The NS said even though my sm is very small it affects my walking. My NS said it's not always the size; it's where it's located & what nerves it's blocking. My walking is better some days. The reflexes in my ankles are gone now too.

I've been told to never use a chiro as it can worsen symptoms. I cannot remember where I've read it, but most people with cm and/or sm should avoid things like roller coasters.
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Re: Help Me Please!!!

Postby letmegethemdigits » Tue Sep 27, 2011 10:29 am

Thank you! Yeah we found out about the syrinx after I had been seeing the chiropractor (no longer seeing him) and took the trip to Disneyland, if we knew I had it I wouldn't have gone. However now I am afraid that it may have made things worse. In the past week my left arm is beginning to feel the way my legs do at times. I have found a NS I want to see however it requires a referral and my NL thinks there is nothing wrong. I have an appointment with a new doctor on Wednesday and we are hoping and praying she will help and believe in me. I will keep my fingers crossed!
letmegethemdigits
 
Posts: 6
Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca

Re: Help Me Please!!!

Postby wendi » Tue Sep 27, 2011 11:51 am

Hello & welcome:

Look for the post Tips for living with SM & CM. There are many things on that post that will help you. There is a search box at the top you can use. I will try and find it and bump it to the top. Also, go to ASAP's main page and request a booklet as there is much info there to be gleaned. You need a cm/sm expert, not just any old NS. Some NS's will also tell you that your syrinx is not causing you symptoms too which is why you need an expert. I don't know of a good one in CA, but there is Dr Oro in Colorado and Dr Ellenbogen in Seattle, both of are great. These experts are few and far between. Unfortunetly, there aren't much surgical choices for sm, like there is with cm, unless it is cm that is causing your sm. You should have a brain MRI to determine that. It is good that you have requested all of your films and such so you have them going forward.

This is a great place to learn and ask questions and we are here to help.

Take care,
Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
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Re: Help Me Please!!!

Postby letmegethemdigits » Tue Sep 27, 2011 12:28 pm

Thank you! Yes I have looked at that post and plan on printing it out. I believe I requested the booklet but I will again just to be sure. The NS I found was the only one I found in CA that lists SM under his specialties. My older sisters boyfriend has 2 younger siblings both with CM and one with SM as well and they saw this NS when they still had Kaiser and liked him. Are both of the NS you suggested with Kaiser? One radiologist I had look at my MRI's specifically looked for CM and said that I didn't have it, but that was based off of my spinal MRI. I will request a brain MRI to be certain. Once again, Thank you. The past few weeks have been very overwhelming and scary, I am trying to deal with it the best I can. Sometimes I just don't know what else to do or what else I can do.
letmegethemdigits
 
Posts: 6
Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca

Re: Help Me Please!!!

Postby wendi » Tue Sep 27, 2011 2:06 pm

I would not know what insurance they take. I would not think so as they are not in CA and I believe that is a CA insurance company. I may be wrong living in PA myself. If you have family that likes this NS, then by all means, give him a go. There is nothing to say you can't get a 2nd or 3rd opionion espicially dealing with this.

Hang in there. And BTW, Breath!!!

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: Help Me Please!!!

Postby reedy » Wed Sep 28, 2011 12:01 pm

Yipes! You've been through the mill. You deserve expert advice. For SM, a world expert is Ulrich Batzdorf at UCLA. He no longer does surgery himself, but runs a top team that does. He is world recognized for his expertise.

Search through this site for posts on SM only. Unfortunately most posters don't write very good thread topics, so its hard (I wish the site were better moderated that way). Find people who's symptoms and approaches are like your own and do a search on the topics they post on. I've been on this site for years now and have commented on a range of doctors for SM only (Heiss, Oro, Iskandar, Batzdorf, etc). Some of the people on this site are particularly knowledgeable as they come from a medical background or have just done a lot of hard focused research and listening over the years.
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Re: Help Me Please!!!

Postby letmegethemdigits » Thu Sep 29, 2011 5:24 pm

Thanks for the info and the help. The appointment with the new PCP yesterday went well. She doesn't think that is conversion disorder and thinks that we definitely need to look further to see what's causing all of my symptoms. She agrees that I need to see a specialist however with Kaiser it's not that easy. She said she is going to call and talk to one today and see what their opinion is. I am happy that she adjusted my pain meds, hopefully this will help. Over the next 2 weeks we will increase my Neurontin to the max dose. Took me off Vicodin and put me on norco every 4 hours. I am hoping that I get in to see the NS within the next month as my left arm seems to be getting worse. Thanks for all the advice and help! It means a lot.
letmegethemdigits
 
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Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca


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