Newly disagnosed newbie to syringomyelia

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Newly disagnosed newbie to syringomyelia

Postby sarahlynn » Mon Feb 13, 2012 10:52 pm

Good Evening,

I have been checking out this forum for about 1 month now, among other sites, looking for answers and ideas. My name is Sarah and I am a stay at home mom of a 7 year old daughter and 2 year old son. I have had pain for over a year now, primarily neck pain that would periodically be so intense I would get a headache too. I thought it was from stress. First, I tried a chiropractor. Apparently, that was not the best move from what I have read.

Next, went to my primary care and they sent me to physical therapy and xrays. I did find with exercise, the frequency of the pain decreased. I stopped therapy due to costs and exercised at home. I did sometimes still have intense pain, but not as often. The stress in my life went away and life has been relatively not nearly as stressful. But, the pain still occurs. I finally had the xrays done. Nothing showed up. Thankfully, my RN said go get a MRI.

The results came in, I have a syrinx. I did start researching with a mind of filter what applies to me and what does not. I have had other symptoms I blew off before, but I am realizing probably relate. I have had tingling fingertips and inside of elbows, I get stiff and feel a need to stretch my back often, and I am sometimes struggle with dizziness.

They sent me to a orthopedic doctor. He was ok. He said the spine did not like to be touched. They would monitor me yearly for any changes in the syrinx. And, to use my judgement with activities. If my symptoms seemed to worsen, back off the activity. He sent me for a full MRI of the full back. I have 2 syrinx - cervical and thoracic areas. He also sent me to get a 2nd opinion.

I went today for a 2nd opinion. What an awful experience because of the way he treated me. His beside manner was rough, to say the least. Aside from that issue, he said, I have a bulging disc where the syrinx in my cervical area is, which is pressing on my nerves and causing my pain. He said the syrinx was no big deal, but would have to be monitored.

My husband and I agree, I am NOT on the right path with orthopedics. I told him about this forum and I might be able to find help and get some answers. I am not sure if I need to see a neurologist or neurosurgeon. I live in southern Delaware, within a 2 hour drive of Baltimore, DC, Philly, and Norfolk.

I know I am in the "developmental stages" as my radiology report describes. I know my pain is minimal compared to stories I have read. I am fine with the diagnosis to sit and review yearly for any changes. I just want to find the right doctor that I am comfortable with as a person and as a competent doctor with syringomelia. In the event that I do need more aggressive treatment, which I pray does not come to pass, who should I go to see?

I really appreciate your help!
Sarah
sarahlynn
 
Posts: 6
Joined: Mon Feb 13, 2012 4:55 pm

Re: Newly disagnosed newbie to syringomyelia

Postby reedy » Wed Feb 15, 2012 8:09 am

Hi Sarah,

Welcome to the forum. Sorry to hear of your diagnosis - as you realise it is a serious one. But like you say, you are at an early stage, and frankly, you might not progress (an ironic word for get worse!) much at all, so while you should take your diagnosis seriously, you should also keep living life to its fullest.

On who to see, you might want to find out if the NIH study is still taking patients:
http://patientinfo.ninds.nih.gov/Diseas ... 1&dlevel=2

There are also a number of other good docs around, listed on this website. If you have a good neurologist, they will tell you when to see a neurosurgeon. Treatment for SM is only neurosurgical, but if you can postpone surgery, then do so. Do make sure your neurosurgeon has as much experience with SM as possible.

Stay active but don't follow a 'no pain no gain' philosophy, stay away from chiropracters, avoid impact sports (no bungee jumping or boxing - though I did fairly extreme SCUBA diving for years with a syrinx), read up on the ASAP site (great thread on living with SM/CM), remember that its different for everyone.

Cheers,
reedy
User avatar
reedy
 
Posts: 334
Joined: Fri Nov 02, 2007 11:37 am
Location: London, UK

Re: Newly disagnosed newbie to syringomyelia

Postby gunflint » Wed Feb 15, 2012 10:08 am

I would highly recommend making an appointment with a neurosurgeon that has experience in dealing with SM. I would also contact NIH and see if you qualify for the study. They will need to see your MRI's but if you can get in your treatment expenses are covered. Also see if they can recommend a specialist if you can't get in. Good luck.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Newly disagnosed newbie to syringomyelia

Postby sarahlynn » Thu Feb 16, 2012 10:36 pm

Thank you for both of your responses. I did find one or two doctor's name in the message boards. Not sure if there is a specific area to find the neurosurgeons, or to just look though all the messages on the boards, there area lot of messages. I did contact the study and now I am waiting to hear back.

I will keep in touch with the board and see how this journey progresses.

Sarah
sarahlynn
 
Posts: 6
Joined: Mon Feb 13, 2012 4:55 pm

Re: Newly disagnosed newbie to syringomyelia

Postby robertsmanta » Fri Feb 17, 2012 12:23 pm

Sarah,

Sorry to hear about your rough experience. Going through misdirected medical attempts would be very difficult. I'm new here as well (just found out last week that I have a syrinx). I am in the Norfolk area, but I am in the military and going to be getting my care through that route. My doctor seems to be competent on the issue, and she's referred me to a neurosurgeon. If it turns out that I'm referred out to a civilian neurosurgeon in the area, I will let you know.

How has the adjustment to your daily life been? I've really had an explosion of symptoms over the past month that have started to impact my otherwise active and busy life (father of 3, husband, Army, law school student, athlete). The doctor has told me to refrain from most of the workouts I have enjoyed for years, and I have had to take more sick days in the past month than I have in the past seven years. I go from periods of feeling like it's no big deal and I don't need any sympathy to moments of "what the crap is going on?" anxiety. While my doctor is smart on the issue and I've done a lot of research, I feel awkward telling those close to me. I'm not sure what to expect, so I'm not sure how to relate it to others. I'd like to include an element of managing expectations when I tell others, but I have no idea what those expectations are. Have you experienced similar feelings?

Thanks
robertsmanta
 
Posts: 4
Joined: Fri Feb 17, 2012 11:52 am

Re: Newly disagnosed newbie to syringomyelia

Postby sarahlynn » Sat Feb 18, 2012 10:48 pm

robertsmanta, I sent you a private message.

Sarah
sarahlynn
 
Posts: 6
Joined: Mon Feb 13, 2012 4:55 pm


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 10 guests

cron