Newly Diagnosed

[SophiasMommy0603]

Hi all! So I was newly diagnosed with basilar invagination and a 3mm chiari malformation about a month ago. My symptoms started about 4 months ago with extreme dizziness, horrible occipital headaches; occasional numbness and tingling in my arms and hands, shortness of breath, etc. Now it's progressed to the point where I'm having extreme muscle weakness and fatigue as well as joint pain. I can hardly get off the couch. I was seen at TCI and they recommend 3 months of traction and a cervical collar but I'm only a few weeks in and it's not helping and I'm getting worse. I may opt to just skip the traction therapy and just do the surgery. My quality of life is practically zero as I'm not able to do anything. I'm a mother of a 2 year old little girl and I feel like a horrible mom for not being able to do anything with her. I'm looking to her second and third opinions before going the decompression/fusion route, but the problem is getting an appointment anytime soon. It all seems to take months to get an appointment with Henderson, Rosner, Menezes, Heffez and Oro. In the mean time the shortness of breath is getting progressively worse along with the muscle weakness. When I went to TCI they didn't run any tests for a syrinx but with my muscle weakness and constant need to urinate it is a huge concern of mine and Dr Rekate said I would only have a syrinx in my cervical spine, which I didn't based on the MRI. But after doing research I've read that syrinx can develop in the lumbar and thoracic spine as well. Does anyone have any info on that?? Also for anyone who had the fusion/decompression surgery- who did your surgery and what were your experiences? How was the recovery, do you still have symptoms, and if so which ones? How is your range of motion after the fusion? Sorry this was so long. Thanks for all your help!

-An overwhelmed 24 year old mom,
Maria

[selmaS]

  Well as I said I was emailing Dr B at TCI and he was not my Dr and he was responding the same day for me.....and I had the same with Dr Insinga....both very caring people.

U have to have trust in ur Dr and be comfortable that they are the right one for u to give u the best care, if u do not feel that way then u need to look elsewhere or try to contact one of the other Drs.....

I agree, this dealing with out medical issues and the Drs can be very frustrating and over whelming.

[SophiasMommy0603]

I wish there was a guide book for this sort of thing! Noone can really tell you when your body has had too much and needs an intervention. I know that basilar invagination can cause sudden death in up to 10% of people who have it due to cardiac arrest or respiratory issues and that totally freaks me out! And not being able to reach your doctor to address your concern is very frustrating. I've spoken to people who have other chiari specialists who are able to email their doctors and get a response usually the same; if not the next day and I don't have that with Dr R. I don't feel I get the support that I need and he doesn't address my concerns that I have with having this life altering condition.

[selmaS]

  July seems to be the one month there are no surgeries either so I am thinking most of the Drs all take off this month,.....I know there is a Chiari conference at the end of the month so they would need to be off for that as well.....

Only u know how serious ur symptoms are....I know u have breathing issues, but I do not know medically how bad they are, I had breathing issues and at age 7 went for my tonsils and adenoids to be removed, I did not get my Chiari DX until I was 48....long time to have breathing issues that were not resolved by that surgery,....but they were not life threatening....

If u feel u r having a severe issue go to the ER.

[SophiasMommy0603]

Hey Selma, Dr R is on vaca and I can't get in to see him until the 18th, the chest pain and shortness of breath are very uncomfortable.. I've read that those symptoms generally indicate it's time for surgery because it can be life threatening.. Do you know if it's life threatening enough that I can't wait until the 18th to be seen?

[selmaS]

  In regards to breathing issues, here is a link to Dr Oro's list of symptoms from Chiari.....please read all of them and see breathing issues is on the list.

http://chiaricare.com/Chiari-1-Malformation/Symptoms.aspx

[frankie_rush]

Hello Maria,

I am sorry it took a day to write it cause of work interuptions.  I have BI and Chiara, was Dx'd in May 2012.  If you read my journal don't get scared of what happened to me happens to less than 5% and it was some of my doing also.  I will go through each of your questions separately.  I have had the decompression and fusion surgery.  I also had two herniated disc.  So instead of two rods I have four rods in my neck.  

1.  Dr. Troy Payner, did my surgery at IU Health, Indiana University Hospital, Indianapolis, IN

2. My syrinx was from C2 – C7 and the Herniation was 12mm.  I also have tethered cord.  Yes, a syrinx can be in the lumbar and thoracic of your spine.

3. My range of motion is from side to side, is about a inch away from each shoulder.  From up and down, up goes about 6 inches and can touch chin to chest.  Remember I have 4 rods in my neck.  Do the exercise because it does help.  If I hold the head held down or neck would get a little stiff.

If you got any questions you can contact me and ask away.  I am back at work and drive and I do everything I done before maybe just a little different way.  The only thing I can’t do that I done before is give the grand baby rides on my shoulders or piggy back.

[selmaS]

  I will PM u some info on the Drs u mentioned.....I can see and understand y u want another opinion...but it is strange I was told breathing issues were a Chiari symptom.....hmmmm

Look in ur inbox for info,

[SophiasMommy0603]

Dr R said Chiari doesn't cause breathing issues, but I find that very hard to believe since it started the same time as all my other symptoms. I've been to a pulmonologist and an ENT and they both agree that they can't find anything else to be causing it. I am still doing the traction 2 days a week until I can get into see Dr R on the 18th to discuss a possible surgery. I went to the ER  at north shore LIJ a few days ago since I live close to there and the neuro surgeon on call who works with Dr R occasionally said when it gets this bad it's usually time to consider the surgery sooner rather than later. I'm not so much scared for the decompression but more so for the fusion and all the hardware that has to go in my neck. I want to get other opinions so I'm trying to get appointments with Henderson, Heffez, Rosner and Menezes

[selmaS]

  OIC....well then mayb ur PCP can offer some help in the meantime.....r u still using the traction?

What Did Dr R say regarding the breathing issues?

Were u tested for sleep apnea, since u have breathing issues u may want to do that....most INS cover for in home testing by NovaSom......

My breathing is deff better post op....when I was 7 my parents had my tonsils and adenoids removed bcuz I was/am a mouth breather....I can breathe thru my nose now, but b4 surgery I felt I wasn't getting enuff oxygen.....now the mouth breathing is more bcuz it is a habit, but I find myself breathing thru my nose with no issues.

If u feel Dr R is the place u want to go for treatment then u should continue with the traction and see how u feel it may take time or by it not helping that will give him answers too on how to best approach this.

[SophiasMommy0603]

I'm afraid to involve any of the other doctors because if they say no Dr Rekate may be upset and not want to treat me either. I just want to make sure I get all the answers I'm looking for. My breathing issues are very scary. I definitely would like some relief to that. And the weakness and dizziness are also pretty unbearable. I know surgery wont cure me but I'm hoping it will raise my quality of life. I don't have EDS or TCS from what Dr Rekate said so I'm hoping the surgery will be successful and no further surgeries would be needed...

[selmaS]

  I have had issues all my life, bowel and bladder issues and DX'd with IBS...joint pains....HA's,numbness, vision issues...all of the typical Chiari symptoms....but it was the drop attacks that lead to my DX and surgery. I had several surgeries as a result of the fall....but only one to date for Chiari. I was told I needed a fusion, TC release....but I have put them off as I was doing ok,...not sure if I want to go for another just yet.My issues now are dealing with my TCS and EDS symptoms, no more drop attacks,my breathing is better....and HA's are nothing like I had b4 and the numbness is also better....having other related conditions it is hard to day surgery helped this or that part since many of the symptoms are similar with EDS and TCS.

It seems more and more that go to TCI see Dr R.....not sure y he feels the need to see most of the patients .....I am glad I got in b4 he joined them.

have u tried to e-mail Dr B?, He may be able to persuade Dr R to move u to a Diff dr.....

[SophiasMommy0603]

I requested to see another doctor at TCI but Dr Rekate would have to approve it and he's the head of the institute now so I doubt that will happen. That's why I'm trying to get 2nd and 3rd opinions from other specialists. I do fear that I have a syrinx based on my symptoms and I felt very dismissed from Dr. Rekate. And I know the surgery isn't a quick fix but it seems that it usually gives people some symptoms resolution, if not all. I'm hoping that's the case for me if I opt for the surgery. How many surgeries have you had and what symptoms did you have to start and have now post op?

[selmaS]

  Hi and welcome to the Chiari forum.

I know with BI it is typical to use traction to see how it helps, and it will take time ....but it is needed to see just how it is all affecting u.....

I am not familiar with Dr R at TCI...but I did go there and my NS did testing for  all related conditions....since that is where u already went have u tried to talk to them again, and ask about feeling worse with the traction.

Also keep in mind surgery is not a quick fix or a cure, u will find that Chiari is life altering....

Is it possible to ask to be seen by a Diff NS at TCI?