What to do???

[010710]

I just had a 2nd MRI of my head on 1/21/14. The first one was taken back on 11/11/11. The MRI on 11/11/11 revealed that I was borderline Chiari 1 Malformation which measured at 5-7mm. My symptoms were: Aphasia, Syncope, Weak legs, Low back pain, & headaches.

I am also seeing a physical therapist for what is deemed as an SI joint dysfunction. The therapy is giving me little relief with a very painful recurring pain post each visit. I have had 2 bilateral joint injections (Sept. 25), which took over 1~1/2 months to even feel a tiny bit of relief. My lower back is showing some swelling at the L~ 5 to S2 levels. Day before yesterday, my therapist almost insisted on stopping the P.T. for lack of progression and stated "you need to return to your doctor and make sure he knows of your Chiari problem.

**I had had a CINE Flow Study done which resulted in NORMAL range.**

The second MRI was on 1/21/14 ~ revealing that I now have a 8mm extension below the foramen magnum level. I also have a slight tenting of the cerebellar tonsils. (ANYONE KNOW WHAT TENTING MEANS)?

My doctor states that the MRI is normal. I am unable to do almost everything but breath.

Feel like I'm nuts!! Any good suggestions??

Thank you!
010710

[selmaS]

  Glad ur Drs will be working with u on this.....


Keep us posted on how u r doing : )

[010710]

Hi Selma:

I saw my Orthopedic dr yesterday as well as my pcp. My ortho dr. is sending me to see a NS and has written an order for a cervical & thoracic MRI. I'm waiting for insurance approval. He said although I (me) am adamant that I feel the problem of pain in my lower back is due to Tarlov Cysts, he is more suspecting that the symptoms are from the Chiari Malformation. He did say, however, that the Tarlov Cysts are quite large.
My pcp concurred with the ortho doc and he reassured me that he was not the one who stated that I had significantly improved.  Will post as I receive info.
Thank you for commenting...

[selmaS]

  Good luck to day and I hope u can get the Dr to see otherwise.

[010710]

Dear Selma:

My procedure went well yesterday. I did see my ortho doctor yesterday and he is getting an MRI if the thoracic spine (& I'm not sure if he's including the lumbar spine). He is referring me to a NS in Indianapolis as he felt that I had some generalized weaknesses. He doesn't feel that the MRI's will really turn up anything different from my August 2013 MRI of my spine. I think he is ruling on the safe side. Anyway, I see my PCP today at 2:30pm. He's the one whom I suspect stated that I had improved significantly.. Will keep you posted.
Regards. 010710

[selmaS]

  It still does not seem right to drop ur INS...I pray ur Dr will appeal this decision and clarify ur condition.

[010710]

Traditional Disability Indiana Medicaid.

[selmaS]

  Hi...INS= Insurance

Good Luck !!

[010710]

Thank you Selma.

I'm not sure what you mean by INS. I will be seeing my PCP tomorrow. I have a cystoscopy today at the hospital. So I am sure that I will be out of it the rest of the day. Thank you for your advice. I will take it and let you know what I find out.

Take Care.

[selmaS]

  I am not familiar with INS that cancels after u r doing better, what type of INS do u have?....

Talk with ur PCP and explain how his report on the decrease use of the strong meds was misconstrued to thinking ur overall health was significantly better....I am sure he/she will be more then happy to clarify ur records.

[010710]

Hi Selma:

I've already had a CINE Flow Study and it was normal, but my symptoms say otherwise. With the fact that I have Tarlov Cysts, CM, & SI Joint Dysfunction, I'm feel pretty miserable. Plus, I'm losing my healthcare as on review of my health records, it shows that I have significantly improved. I feel I need to explain why one of my doctors (PCP), who has done nothing but send me to referrals, is helping me (at my insistence), to withdrawal from a benzodiazepine that I have been taking for 26 years. A previous doctor told me I may just need to resign myself to the fact that I may have to be on them for the rest of my life.. I was give this medication years ago after the death of my father and then within 33 days I lost my sister in an auto accident. I suffered PTSD. But I could not find a doctor to help me get off of them. I finally found my current PCP & he has been superior as slowly bringing me off them. But, the only thing I'm upset about is that he stated that I have "IMPROVED SIGNIFICANTLY", but that it is only referring to my coming off of the benzo. So when the insurer's saw this, I guess that they assumed that ALL Body functions were improved.

The ortho doctor I am seeing has only seen me twice before sending me to physical therapy, which I have done for 5 weeks before I have to stop due to the increased pain in my back. I see him again on 1/27/14. That same day, I am have my 3rd cystoscopy in one year as I was diagnosed with interstitial cystitis (weeping & shedding of the protective lining of the bladder). It in itself is a pretty painful condition. I had a bilateral SI joint injection back in Sept. 2013. My ortho doctor wanted to take the conservative approach using physical therapy first b/c I have osteopenia and anymore cortisone injection could weaken my bones.

I never ever thought that I would be in this situation, not even one year ago, but here I am. What can I do. I feel so abandoned. BTW....my Tarlov Cysts measure 2.3cm on one side & 2.5cm on the other. OUCH!!!

[selmaS]

  Hi...I am not up on Tarlov cysts as I have not been DX'd with them and the info is best from one with first hand knowledge...

I will mention I do have a friend that had surgery on one and is doing much better as a result. But as hevew8s mentioned not all need to have surgery on the cysts...just as not all with Chiari need decompression surgery...

The CSF flow study or CINE MRI is what u need to look at next....rule out ALL related conditions as it will affect how u feel and heal should u be a surgical candidate.

[hevnw8s]

I am part of several Tarlov Cyst forums. Everyone with this nasty disease will tell you NOT to do physical therapy. Any stretching, twisting, lifting or pounding will cause them to flare...and when they do it's not pretty. Dr. F may tell you wait a year after surgery and see how you feel. Do only what your body will allow.

If you want to PM (private mail) me, I can give you some insight to the process. I have spent several years fighting doctors to get one of the only treatments available for TC's.

It's hard having both CM, Syringo and TC disease. The symptoms intertwine so getting relief is near impossible.

[010710]

Hello there:

Thank you for your input into my situation. I am so baffled. My problem is beyond this.....I am on traditional Medicaid. I just got notice from them stating that they are terminating me at the end of February as my pcp stated that I have significantly improved. He stated that this MRI is normal.

If you have any other information, please forward to me. Did Dr. Feigenbaum say not to have physical therapy?

Thanks again.

[hevnw8s]

I also have Chiari 6 mm and Tarlov Cysts. I actually just had surgery on my cysts as they were very symptomatic and causing pain. It's very difficult to have both diseases since they both can share symptoms. You may want to check with Dr. Feigenbaum in Dallas (check his website) for the Tarlov Cysts. He is one of two doctors in the US that deals with them.

You should never have physical therapy with Tarlov Cysts as that will only cause them to flare-up and cause lots of pain.

Good luck

[010710]

Hello Selma:

No other tests have been ordered. I do however, have two fairly prominent Tarlov Cysts at the same levels I mentioned before. The NS's state that they do not want to mess with them as they are asymptomatic.

What do you think?

[010710]

Hello there:

hank you so much for your input. The cine flow study I had done showed no obstruction, but the symptoms are horrendous and multiple. Do you think that they will wink an eye at those symptoms?

[The_beat_goes_on]

Hi,

All of my MRIs measured my herniation differently.  Different radiologists measure them differently and any Chiari NS worth his salt will never even look at the report ... instead they will just want to disc to judge for themselves, and even then, try not to focus on the millimeters, but on the blockage and your symptoms.  

[selmaS]

  Hi and welcome to the Chiari forum.

Sorry I have not heard that term in regards to the cerebral tonsils....but will see what I can find out.

Have u had other MRI's of the spine, thoracic, lumbar in addition to the cervical and brain MRI's...this would be to rule out Syringomyelia, disk issues and tethered cord.