Not sure what to think

[AnnieDear]

Hello everyone! I went back for my follow up with the local NL and I'm just not sure I trust him. I really don't believe he knows anything about Chiari or related conditions and I'm pretty bummed. I was so relieved in February when my PCP seemed to be on board with getting me back to a good quality of life. He referred me to who he said was the best local NL, knowledgeable in Chiari, who would get me nerve medication, good phsical therapy with someone familiar with post-decompression and syrinx, and help figuring out the pins & needles, dizziness, nausea, and pain. I had to wait two months to get into the NL. He told me to try Topamax to calm the nervous system and he thought I was having migraines. I didn't really trust him at that point because he didn't reference or even listen to my reference of the herniated discs, numbness/pins/needles, scoliosis, or Chiari at all. I already had a follow-up scheduled with my NS for two days later, so I waited to ask him if he agreed with trying Topamax. He also didn't agree with the migraines, but agreed that the Topamax could help calm the nervous system and was worth a shot. You all also agreed it was worth trying. The NS also said I am a complex case, so he would be interested in working the NL on it (I live about 3 hours away from the NS). So at this point, I was feeling hopeful, finally, that things might be looking up. I started the Topamax and it did seem to alter the headaches a bit for the first couple of weeks.

After about two weeks (up to 75mg per day), it stopped helping and the pain and numbness, pins and needles, and dizziness got worse. I was due for my follow-up with the NL but they called and rescheduled for two and a half weeks later. About a week after that, I could not take it anymore and called the NL to try and be seen. They said he was not in town, so call my PCP. The PCP had me come in and I told him I was concerned that the NL was not doing what he had hoped with the PT and testing; he said that the NL had to start at the bottom and to give him time. He offered me pain medicine and this time I actually accepted, but requested only Tylenol 3 as I do not like taking meds.

I saw the NL on Wednesday and he wanted to up my Topamax and he said my muscles are too tight. That I need to loosen them up and to take 5mg of Flexeril at bedtime. I asked about the other conditions (possible EDS & POTS - what the PCP wanted me tested for, and confirmed Chiari, syrinx, scoliosis, and herniated discs). I also asked about the pins and needles, numbness, tingling, weakness, dizziness, nausea, and pain, He said "If the NS didn't find that how am I supposed to? All I know is you have a headache and that's what I am treating." He also wants me to do stretches several times a day that involve stretching my head by bending my chin all the way to my chest and looking up at the sky all the way back. I thought I should not be doing that??

Point is - he is not interested in anything but migraines it seems. But all of these symptoms cannot be ignored. Or am I the one missing something here? I am just so confused and lost and so tired of fighting this uphill battle with ignorant doctors and so called "specialists" at every bend. I do not want to just take medicine and keep hoping this wil resolve on its own. I have a life - 3 youngish children that need me to guide them still. And I am lost. Everytime I start thinking of this stuff, I get angry and sad and confused and just tired.

Thanks for letting me vent. I am beginning to feel that a lot of my pins and needles and numbness and tingling is probably more a result of the herniated discs because it's left-sided. I just find it odd that the left side of my face is also affected now, too. That started in March and it is just weird, so maybe not my discs? I would still have the surgery again, though, because my left leg holds up pretty well now and I do not have the awful burning feeling anymore. So those are positives. I just wish I could figure out what is still going on and how to deal with it. I do not have the benefit of just not doing daily activities or listening to my body. Maybe one day, but that is not today...

Annie

[selmaS]

  No worries...keep us posted on how u r doing....

Try talking with ur PCP mayb u can get them to do more testing or help u find a Dr that will.

[AnnieDear]

Thanks for the response, Selma.

No, my NS didn't do any testing at all. I had to beg him to even look for TCS (he said it was negative, but not 100% sure). Now that I'm a little more clear-headed about all this, I'm wondering if I've been blind about it all. lol  He only looked at the Chiari and syrinx.

The doctor that gave me the possible EDS and wanted further testing was an ortho for my knee, which was a different doctor than the one that did my scoliosis surgery. So the EDS fell through the cracks. I never even knew about it until last month (?) when I got those medical records. So it went 16 years without seeing the light of day, so to speak. It may have had a role in the hardware needing to be removed.

None of the doctors will do labs for low levels of vitamins and minerals. They all brush it off. However, at the February visit, my PCP did recommended Folic Acid and B12. Then the NL recommended Magnesium. So maybe they were on to something after all...

Thanks for the recommendations :)

[selmaS]

  Hi....go with ur gut...u know how u feel and if u do not trust ur Dr u will not follow his suggestions so it is a waste of time and money....

I strongly believe we have to have a Dr we have faith in....so look around...ask ur NS if he knows of a NL in ur area that he feels knows enuff about Chiari and related conditions to help u.

U said u r trying to rule out EDS, POTS, didn't ur NS test u for these?
And u mentioned possible EDS< is that y u had to have the hardware removed.??? Sorry if u told me already...I just can not remember....

Starting with TOPAMAX to change the  morphology of the headaches u have is what most will start with....

For numbness they should do blood labs to look for low levels of vitamins and minerals like Vit D, B12, magnesium and potassium...

A good rheumatoid Dr should be able to test u for EDS< call and ask them if they treat it...if they ask how to spell it u know they don't.

[AnnieDear]

Ha! In all my ranting & rambling, I forgot the main point. I have headaches (intense pressure in head and eyes, as well as pain), pain in neck and back, pain down left arm, a stretching/pressure/pain in my mid-back, dizziness and nausea, and pins and needles, numbness, tinglinging, & weakness on my left side and my face. I also have difficulty with my jaw (opening very wide) that started end of March. I have Chiari, syrinx throughout entire T-spine, and scoliosis, as well as several herniated and bulging discs in C-spne and L-spine, my C-spine is also straight where it should be curved and curved where it should be straight (lol). I had a spinal fusion of T-spine in 1997 and had to have the hardware removed in 2000. Possible EDS Dx in 1997, also, but did not follow up because I had the fusion the next week.  I had decompression with C-1 laminectomy in 2012.

PCP wanted me tested for EDS, POTS, and TCS, which is why he sent me to the local NL. However, the NL seems only intent on migraines and giving me Topamax (now 100mg) and muscle relaxer. No physical therapy or any other treatment. He also wants me to do stretches several times a day that seem contrary to what I was told I should be doing (chin to chest and looking all the way up, for one).

My question - why I came on here - is do I trust my gut and just not go back to this guy? Or does this seem logical?

Thanks!
Annie

NL is only treating