Medical Care at a dead end

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Medical Care at a dead end

Postby petsmom » Sat Jun 23, 2007 6:53 pm

My neurologist has admitted that we are running out of options for me. I kinda knew that but at least he is being honest. Saw him Thursday to go over results of recent Lumbar MRI. Let him know my symptoms are a bit worse but might be due to hotter weather, which has been a big factor since '99.

The "cape effect" area has gotten larger, more intense. He has finally accepted that my hand problems are from cervical problems and not carpel tunnel. Did not mention the braces he wanted to try for hands and lower back. Good! Can barely wear a bra let alone mess with braces irritating my hands and body!!

The new Tenncare plans they pushed on everyone recently are a nightmare. Lost what few specialists we did have. Plan is not paying up to its providers. Wondering how long he will accept patients under this Tenncare?? Asked if I felt bad enough to see about surgery option? Strongly advised I would not allow anyone without prior SM experience to cut on me. Would rather slowly cripple than be cut on by just any NS. He agreed and stated that the Tenncare will not pay for a top notch NS.

I finally got my pain meds without a fuss. Now what?? He is putting in for MRIs of neck and thoracic to see what changes since last films done. I am wondering if they denied his request for my braces, didn't really elaborate.

Anyone here with thoracic syrinx that is just living with it, no surgeries?? I realize the prognosis is diff for each and every patient. I do already have a power chair and walker. Landlord just had a new deck put on and space where ramp can be added when needed.

My neuro has just opened a branch office here so won;t have to travel to see again. Big help there. So I guess I just sit this one out and hope for the best. I can deal with the disc problems with help from an awesome chiropractor, neck and lumbar. Already got nerve damage from those but he is keeping the nerves untrapped best he can. His adjustments hold for quite a while unless I do something silly. However there are problems right above the syrinx area that are getting worse. And he does not go near there!!

Any words of wisdom appreciated. Just have to be careful and keep myself as safe as possible.

Dawn, TNgal
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
Posts: 443
Joined: Wed May 23, 2007 9:22 pm
Location: TN.

Postby mac » Sat Jun 23, 2007 9:38 pm

Dawn, how disappointing and frustrating this must be for you! I just can't imagine. But I don't want you to feel hopeless, okay? There is always hope!! Never give up on it, my friend. Lots of folks here praying for you, too.

Sandy has a Thoracic SM and she is "living with it." I know she can give you a lot of tips on how to manage. She has an indomitable spirit, as you know! I like what someone's signature says (sorry I forgot who) but something like "it will all work out in the end, and if it doesn't, it isn't the end." That is a real working way of expressing hope. God has a plan.

I'm glad you stuck by your guns about not allowing just anyone to open up your spinal cord! I think that is a great example of the things we learn here, to stick up for ourselves and for the right thing at the right time.

Tidbit had a shunt surgery and has done well with it. Maybe this NL just doesn't know all the options? You applied to the NIH study, didn't you? If not, that's an option. I know that most surgeons, the experts, are not likely to want to do shunt surgeries, but in some cases, they do and maybe you are a candidate for that.

Let us know if you get the authorization for the MRIs and the outcome. I pray they will not show anything getting worse. It sounds like your NL honors and respects you and that says a lot, and I'm glad he will be closer for you to visit.

I wish I could do something to make it all right...but you know how that is. But just don't give up yet, okay?

big hugs

Postby petsmom » Mon Jun 25, 2007 5:39 pm

Oh bless your heart. You are always such an enouragement. My memory is shot but you and Sandy were on when I first found the board back on '05. I was canninesmomma then.

The medical coverage nightmare in TN has impacted a lot of us with chronic issues. I would not have my coverage back unless approved for SSI. Anything is better than no coverage at all. So yes, I have had to do my research big time and advocate for my care. So tired of the fight at times, having to do my doc's homeowrk for them.

I think that having my pic and that Tenncare article appear in our local paper has some people taking me more serious. Maybe a cooincident. But I had made specific mention of my neurologist and how glad I was I wouldn;t have to change neuros with the new coverage plan.

If I can keep my neck/lumbar from getting worse I can deal with the effects from the syrinx. I will better know when it is the syrinx acting up/causing a symptom..With my whole spine acting up it is hard to discern what is what??

Got a call today and MRIs set for the 28th and see him to discuss the 9th of June. His office staff is right on the mark for scheduling. etc. Well run office. His med asst. is also a sweetie and that really is a plus. She did the evoked potentials test on legs signal to brain and found nerve damage both legs, same nerve bundle. I already knew it!!! But the documentation of this helps keep SSI happy!!

As I said I still have Faith so I'm miles ahead of anyone who doesn't know about that concept.

Dawn, Tngal (think there is another Dawn on board??)
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
Posts: 443
Joined: Wed May 23, 2007 9:22 pm
Location: TN.

Postby heaven » Mon Jun 25, 2007 5:55 pm

Yes, it's me the "other Dawn". To avoid confusion I won't sign as myself, lol. Besides, you always give great answers and I don't won't to still your praises. I have a thoraic and cervical syrinx (amongst other things). I can't offer anything positive though. My doc also said we have reached the end of ideas for me. He wasn't nasty about it though, just spoke the truth.

As far as living with it, yeah you can, I don't dispute that. But, the quality of life sucks. It's hard not to complain when you really have something to complain about! Sorry to her about your insurance situation. I was approved for SSI years ago. I sure you will be to. Many blessings to you and yours.

Postby petsmom » Mon Jun 25, 2007 6:41 pm

Well, thank you there MS. Dawn. Some day I am inspired with my replies and some days it's not happening and I just lurk.

Yes, did get the SSI which is why I was able to get back my coverage. Went without any from 8/05 until SSI approved 7/06, that was rough going.

My syrinx is narrow according to what NIH told me back when sent films to them, but did not mean it was not causing multiple symptoms. Actually it was worse years back when I think it really formed--such burning in spine!!!

Nice to meet ya finally,

Dawn, TNgal
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
Posts: 443
Joined: Wed May 23, 2007 9:22 pm
Location: TN.

Postby Sandy » Mon Jun 25, 2007 9:16 pm

Hi Dawn,

I have a thoracic syrinx. And I'm having a lot of pain in the lumbar region now too. I'm waiting for Ken to have his scopes done (July 2nd) and then depending on the outcome I will be scheduling an appt. with my doctor, too. I need new full spine MRI's. And I dread it.

I have no options either. Just pain meds. Sucks. But that's better than having a botched surgery and having to have several more I suppose, if we can look at the bright side.

I had my first wheelchair experience out of the house a week ago today when I went with him to the V.A. Hospital for an appt. (150 miles) Boy did I booger myself up learning the hard way that I have zilch, zero, no upper body strength at all. Still can't ride in the car again yet.

Hang in there, I am. We must preserve to persevere. Not overdo it I tell myself whenever I have enough energy to do anything, that is. See silver linings whereever we can. You, my dear, are very much one of my silver linings.

I am probably looking at a power chair in the very near future myself. I'm also very glad, btw that you won't have to travel to see your doctor. See? A silver lining right there!

Chin up, friend. Chin up. We'll just lean on each other here all we need to. SM has taken just about everything from me good in my life that it can, and I know that new good things have to come or some of the old restored somehow.

sending a gentle hug your way,

DDD - cervical
B12 deficient

But I can still smile. And I can still write to our soldiers who are overseas. I hope you can smile, too. :D
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Postby SMLady » Tue Jun 26, 2007 11:21 am

Hi. I have a thorasic syrinx too and am just living with it for now. They keep my pain under control with pain meds, and I have a radiofrequency denervation done every year, which helps tremendously. They aren't going to do anything else until it gets to be at least 6mm. It's 5mm right now. It's a real pain (no pun intended), but at least I have the pain meds to help me make it through each day.

Take care.
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Postby gncrzy3 » Wed Jun 27, 2007 2:25 am

I have a syrinx that runs from my c3-4 ( they can not agree) to my L-1.
they keep telling me that shunting is not an option unless it moves more tward my brain,, and that is a difficult procedure,, ( this was confirmed by differant dr's.. Pittsburgh, cleveland clinic,,, and most recently at georgetown university hospital in washington D.C. But When I was referred to washington... they FINALLY gave me the reason for my syrinx,, I also have basilar invagination.. and according to them.. that is the reason for my syrinx. They control my pain with meds as best as possible,,and I have several large areas in my arms that are numb.. and intractible pain in my shoulders. But with any luck.. I was told that there was a possibility that the operation to correct the basilar invagination MAY actally shrink the size of my syrinx ( CROSSING MY FINGERS!!)
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