I wish I knew how to give up some days.

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I wish I knew how to give up some days.

Postby KarenAnn » Mon Jun 11, 2012 3:08 pm

Hi I'm new to the boards but really just need to vent after a difficult appointment with my primary. I saw him today for the first time since finding out I have a syrinx from my T3-T11 and after feeling like I haven't been believed by so many doctors for so many years I had really hoped it would be different with my primary. He had seemed like he wanted me to find answers and referred me as needed. However, I started requesting a T-spine MRI back in January and asked multiple doctors, including my primary, all with the same 'we can't justify that' excuse for not ordering it. Finally, I caved and asked my Mayo Gastrointologist to order it for me. After a hassle and a half it was finally ordered by my Mayo Dr through my local primary. So finally after 30 years I feel like I have an answer. I've been doing research and reading lots of personal stories and the symptoms are similiar enough I finally can say yes this is my problem. I've been diagnosed with everything from Fibromyalgia to arthritis and said yeah maybe so but there's more. Always to be told no, that's it. Now my primary says that this syrinx, Schmoles nodes, spurs, and various spinal fluid leaks are probably just incidental findings. What? He wants to start me on an antidepressant because he really thinks that's what's causing my pain. So it sounds like I get my choice of antidepressants. Um thanks but no thanks. This is after the conversation we had about the fact that nothing has worked for my pain to date but not much has really been tried either. He started listing off all these meds one at a time, you've tried blah blah right. Nope. But you tried blah blah? Nope. So finally he decided that since I've tried 4 narcotics, 2 muscle relaxers, and Gabapentin in the last year Ive tried it all and lets try something for depression. Really, the man said I've dealt with the pain this long so what's another month till I get to the neurosurgeon at Mayo. Like I told him it obviously isn't him having to live with the pain because he wouldn't say that so easily. So apparantly because I have been forced my whole life to be strong and keep pushing through the pain I'm supposed to just lay down like a dog and keep doing it because once again, it's in my head according to my doctors.
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Re: I wish I knew how to give up some days.

Postby vframe » Mon Jun 11, 2012 8:58 pm

hello karen, i too am new to this site, actually, this is my very first post, i know how you feel. after reading several other posts, i believe we all can feel your fustrations. i have not had the diagnosis as long as you, but i have had back pain for years, at first, it seemed like it was related to my cycle so my pcp referred me to a gyno who did a procedure that didn't stop the pain, then, i began having acute pain across my shoulders that felt like i was carrying a large load around and began having numbness and tingling in my hands, my pcp finally did an mri and called me in a panic, said i had a "growth" in my spine and referred me to a NS who did more mri's and after that, came in to my exam room and took appx 10 minutes to tell me basically take an aspirin and come back if it gets worse, didn't expain anything to me, just said i had a syrinx and left the room. i went to a different NS who was such a blessing, did more mri's and other tests and told me my syrinx was basically in "no man's land" and he couldn't do anything and besides it was too small. but he referred me to a pain specialist who i have only seen his face twice. once at initial exam and once before he put me to sleep for a neurotomy (after many other tests).
it is so frustrating, but it is so wonderful to have found this website. i have learned more from reading other posts and all. it is amazing how much help this site has been. i wish you well and hope you find relief soon.
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Re: I wish I knew how to give up some days.

Postby June » Tue Jun 12, 2012 12:30 am

KarenAnn and vframe,

Welcome to ASAP. Sorry you need to be here, but glad you found us. What journeys you both have had, and there are many others here who have been through similar difficulties. I hope that you both can find good neurosurgeons who specialize in Chiari and/or syringomyelia so that you can get the treatment that you need.

If you each will post a request for specialists with your location, one of our members who keeps track of these doctors will give you lists of doctors near you who can help you. It is very important to have a doctor who knows about syringomyelia. Not all neurosurgeons are able to help us.

Good luck to you both. Keep us posted about how you are doing.

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Re: I wish I knew how to give up some days.

Postby KarenAnn » Tue Jun 12, 2012 5:50 am

vframe Thank you for your encouraging words. I'm glad you finally found a good NS!

June, Thanks for the warm welcome and I will for sure post about a SM doc in ND but I haven't seen any in all the lists I've looked at. It feels like the end of the rope for me.

My syrinx was actually just found on 5/18/12 and my Mayo doctors want to run a bunch more tests to see exactly what's what. One of my biggest fears at this point is that I just went on Medical Assistance as of June 1st and they will decide, based on my primarys referral whether or not I should get out of state approval. My primary already said he wants me to see the NS in town but that he will try to get me approval through Medical Assistance to go back to Mayo for my appointments the week of July 9th. Three days worth of appointments and tests that are probably all going to have to be cancelled. I feel like all hope is going to disappear if I have to go back to the NS who refused to do the MRI and informed me there was nothing else he could do for me. This was a month ago so I don't see him all of a sudden wanting to do something because of the newest findings. Maybe I'm just being a pessimist but this NS had a serious God complex goin on and I have no doubt he's going to say it was incidental since in his head it wasn't justified to do the MRI in the first place. It's so hard for me to know that I have some of the best doctors in the world available to me, working with me, and believing me and because I had to reduce my hours and couldn't get private insurance anymore I'm being thrown to the dogs. I have no doubt that if I end up not getting to go to Mayo I will get another primary and start all over but I don't know if I have it in me to see it through all the way to Mayo again. God I don't want to start this whole process over again. I've been a patient at Mayo since November and I've got 7 specialists there because of the way this thing has broken my body down. Yesterday when talking to my primary I think he literally only heard NS. I started telling him some of the other appointments and specialists I'm scheduled to see next month and he cut me off and just said oh. I have a feeling he is only going to kinda try to get the approval for a day because he thinks all I'm doing is the NS. I swear these people are trained how to block people out and just nod their head.
T3-T11 syrinx-Symptomatic since age 5-Found @ age 35
12 bulging discs with C4/5,T6/7, & L4/5 causing the most compression
CSF secretions throughout abdomen

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Re: I wish I knew how to give up some days.

Postby phyrehawke » Fri Jun 15, 2012 10:51 am

Time will probably get you to the right doctor and a proper evaluation, but it also requires that you be patient and not give up on yourself. It's also important to ID things you may be doing to make the syrinx symptoms worse (often lifting, pushing, pulling too much weight, overactivity in general) and learn how to live with it. It's not easy but it's worth the effort. There is an old post on the Chiari/SM Discussion side of the Board called Hints/Tips that I'll try to go find and bump up to the top of the message board for you so you can go read it.

Also, General Practitioners are used to dealing with immunizations, pregnant moms, and kids and adults with basic stuff like colds and infections. When they pick up stuff out of their realm they can usually refer it to a specialist or surgeon and it gets fixed. They tend to get overwhelmed by us because SM is neurological, chronic, and rare. They want to help but don't know how. It's not stuff they normally deal with. It might be helpful for your GP to help you find a good neurologist, who are a lot more common than NS's. A good neurologist can evaluate the SM, and monitor it, and order the proper films, and help you with medications, even though they can't do the surgery. They can also help deal with your insurance company, and they will know the local neurosurgeon's much better than your GP would.
That might be a less frustrating way to get you started in the right direction?
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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