Request for Surgery Outcomes with Dr Forrest (Columbus OH)

General
1

Hi Everyone,

I recently saw Dr Forrest in Columbus OH. He was very personable, and professional, (his personality and demeanour are a solid 10) and seems knowledgeable about ES.

He wanted to try botox in my neck and shoulder prior to making a decision about surgery. My styloids are 5.7cm on the left, and 4.6 on the right. My symptoms have been orthostatic imbalance, palpitations, episodes of arrhythmia, intense muscle spasms in my neck and shoulder, difficulty swallowing, circulation issues- particularly when laying down, hoarseness, etc. The pain has been manageable for the most part- until the botox. The botox has calmed my trapezius down, but has left my neck feeling more vulnerable to movement. I have constant pain now, in my neck and head.

His thoughts about trying botox were that my ES symptoms might be magnified by the muscle problems I have. (I have a history of whiplash, as well as ES) He hoped that by calming down the muscle, the nerve issues would improve. It doesn't appear that this has worked, and now surgery is definitely on the table.

I have heard on this site that Dr Forrest has done multiple ES surgeries- upward of 30. I intended to determine the accuracy of that at my appt, but got focused on the treatment (botox) being offered and didn't confirm that. I'm wondering if there is anyone on this site who can report about their surgery experience with Dr Forrest? I got the impression from him that the surgery is quite simple, and I should recover easily. He doesn't intend to take the whole styloid- but to leave about 2 cms. He would take part of the hyoid- reattach the ligament so the styloid no longer has anything to attach itself to, and then take most of the elongated styloid as well. I'm only having the left side done for now.

Can anyone tell me how they are doing post-op with ES surgery done by Dr Forrest? And if you had surgery with him, did he do this particular procedure on you? (removing some of the hyoid as well)

I am concerned about leaving any of the styloid, based on discussions on this site. Dr Forrest disagrees with the theory that the whole styloid has to go, based on the fact that everyone else in the population has styloids, and they are fine. He believes the strap that is created by the ligament attaching itself to the styloid is the real issue. If others have had this surgery done by Dr Forrest and feel it was successful, it would help me in making a firm decision.

Due to my orthostatic imbalance and resulting history of health problems at elevation, I am hesitant to travel out west, making an appt with Dr Samji impossible at this point. His approach seems to be one that is working for all of his patients, so if elevation wasn't a factor, I would also want to consult with him.

I appreciate any thoughts/comments you may have for me!

Again, my impressions of Dr Forrest have been extremely positive- I just want to do everything I can to not have to have more than one surgery for this problem.

Thanks everyone~
Ang

2

You need to always go with what you feel comfortable with. At least you tried an alternative botox treatment. You can always ask Dr. Forrest for patient references in terms of this treatment and speak to them if it is ok'd through both parties. Remember you have to be your own health advocate. If he has done 30 successful surgeries, there should not be a problem with you getting information on the outcome of some of his patients. Sorry I couldn't give you the information you requested I just wanted to share my thoughts with you. Good luck on whatever healthcare decision you make in the future. I am sure it will be the right one.

Viperbone

3

Wow I wondered about the botox for a treatment, too...but I wasn't sure which muscles they could use it on in the neck.

I like the idea of removing the whole styloid. I know in my pix that jugular compression is located right up near the base of the styloid..not lower, so I'm not sure the strap is a more likely possibility. I think some people might just have a more narrow skull that makes the styloids a bigger deal as they 'clamp down' a little on the neck structures than if they were nice and widely set on a wider skull. I would guess that most people have a pretty standard neck circumferencefor men/women, but if you have a narrow skull, then...seems like that might more easily cause problems (and maybe even a thick neck would?). Maybe the normal population just has a nicer 'fit' with the skull and neck, and why they can have styloids without problems. Who knows.

I wish you could see Dr Samji, too...but I like your doc, just maybe not the part about leaving the whole thing there. That's just based on reading how people have had to go back and get the rest of it removed.... Which would suck.

4

Thanks for your responses, Viperbone and Tee.

VB, I agree with your thoughts on moving ahead once I feel comfortable. I'm almost there with this doctor- but want to resolve my last concern about how much of the styloid he will take. I'm not sure how to go about finding the results of his other surgeries, given privacy concerns. I live in Canada, and that's a really tough thing to find out here- maybe its different there. I'll have to look into that.

As for botox, I'm glad I tried it for two reasons. One is to be able to report back to other ES patients about how it turned out- and the other is to know for sure that surgery is the path for me. I have to say, its surprising how much worse my symptoms are since I had it though.

And Tee, I'm with you on feeling like it makes more sense to take the whole styloid. Every doctor I've mentioned that to though- that is, 2 ENT's and a Neurosurgeon- each feel that its a higher-risk surgery to go up as high as the base of the skull, and shouldn't make any difference in the outcome. That's why I'm hoping to hear from others who have had the style of surgery that Dr Forrest is offering. At this point, I'm feeling like I'll go ahead with this and encourage him to go as high as he feels he can safely go.

I'll keep you posted as things progress! I have to wait for insurance to get worked out before I can book surgery.

Good luck to both of you!

5

Ang-

Not sure on the doctor's treatment decisions, but you are the only other person I have met that called a symptom "orthostatic imbalance". That sounds exactly like me! By that description, do you mean feeling very off balance when trying to stand still?

I have POTS- postural orthostatic tachycardia syndrome, Intracranial Hypertension and a shunt for same placed this summer. It is helping somewhat, but I remain very off balance when standing and sometimes sitting. We didn't discover the jugular compression until after I got the shunt.

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Kitty- I have POTS, which my doctor also referred to as orthostatic imbalance. I have episodes of low blood pressure that can be caused by changing positions. I often feel off balance when this happens- almost like I'm going to black out. I usually get very strong pressure in the back of my head when I stand up, followed by a racing heart and general weakness. When I took the tilt-table test, I discovered this was my blood pressure dropping. Incidentally, my stomach also reacts to these changes, (I get esophageal spasms) making me wonder if this is due to vagus nerve compression.

I have also had a LOT of pressure in my head, at times affecting my vision. I feel and hear my pulse in my ear strongly- pretty much every night. As well, I get a lot of pressure in my neck if I bend over or exert.

I suspect this is all related to ES. I tend to have an almost electrical-feeling ache in my neck when my symptoms hit. I haven't yet found a doctor who seems to want to understand all of this as it relates to ES, other than an internist- who wouldn't be able to do anything to help me.

Hope this answers your question!

7

I have symptoms of POTS (perfectly described by Ang minus the esophageal) as well; I am getting the lumbar puncture to check for ICP...will tell you what they find, if anything. Ang is right; getting a response about those symptoms is ....well, it just gets no response, pretty much--it's other things like the findings on the scans that initiate action, seems like.

8

Well, I feel less alone here! Sorry both of you are describing symptoms I am very familiar with, though. I too can nearly pass out as you describe, Ang.

It is well know that in people like me, with EDS (Ehlers Danlos Syndrome) many of us have POTS due to the laxity of the blood vessels, so I truly did not expect to find others w/o EDS but have POTS.

Tee- I was first officially diagnosed with Intracranial Hypertension last year buy spinal tap, then a couple more taps later on to confirm. Prior to that, I was on medication to lower the pressure, which helped, but only to an extent and it also seemed to not be as effective after a while, so I would stop and start it. Now I have the shunt and it helps, but only so much. I "hope" I can assume that is because both jugulars are still compressed. I have grown collateral veins at my skull base, at the foramen magnum. Guess they aren't up to the job!

Please let us know how the lumbar puncture goes. My highest reading was a pressure in the 30s. Others in the upper 20s.

9

I'll msg you, K

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My doctor here in AZ only removes the whole styloid back to the skull base if it is compressing the IJV. He left 1 cm of mine because it was not compressing the IJV and he also said the same thing your doc said about people having 2cm styloid. He also said he would remove part of my hyoid if it had calcification. Mine did not. I have my left side to do and will get that done after the first of the year. Go with your gut. I did and do not regret it. Now just to get the pain from my TOS under control. I am going to try botox for that this month hopefully.

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Tee, I'm hoping to hear about your ICP test when you have it. I suspect mine is high, too, if symptoms are any indication. Please message me when you have it, if you get a chance!

BigsBug, I hadn't heard of a dr deciding how much styloid to leave being related to IJV compression. That's interesting! In my case, I'm allergic to CT contrast dye, so I'm not sure if I have IJV compression or not. My MRI says the external carotid is up against the tip of both styloids- so I'm guessing from my symptoms and from that comment that there are compression issues. I guess I'll have to trust this doctor to go in and have a look for himself, and decide what to do at the time. I'd be happy to just have the whole thing gone- on both sides- but don't like the fact that so many doctors have said that this comes with increased risk.

It sounds like your AZ doc knows enough to have a confident and logical opinion on when to do which type of surgery. I'm glad you told me his thoughts- I can now ask my doctor if he is removing some of the hyoid due to calcification, or for some other reason.

Is your TOS on the same side where you already had surgery? I have TOS symptoms on my left side, and its very annoying, especially when trying to sleep. I am hopeful that its somehow caused by ES and will go away post-op. I'm interested in hearing your experience.

Thanks again for your responses..

Ang

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..and Kitty, I know what you mean about feeling less alone when you know that you're not the only person going through this. Its comforting for sure- but will be even better when doctors start to take note of what we the patients are telling them. I think its no coincidence that so many of us share symptoms. ES can come in different lengths, shapes and can occur on either or both sides. It pushes on one person's jugular, but on another's cranial nerves, throat or carotid artery. It is bound to cause a myriad of symptoms. I hope that one day the list of symptoms for this profoundly misunderstood diagnosis will be more comprehensive, and doctors will recognize what each symptom is telling them, and know when surgery is required.

I live in Canada, and my experience here has been a patience test since day one. (no pun intended) I think that the frustration of dealing with ES is probably universal though. This week I had the added frustration of being told by an ENT that due to government funding restrictions, she couldn't in good conscience recommend me for surgery when there are people dying of cancer because they are waiting for treatment. I have found that there can be more than one battle to conquer with ES. From diagnosis, to understanding your symptoms, to dealing with pain and changing lifestyles, to finding a doctor who understands, to having your surgery paid for- and to hoping you recover after you put yourself through it- its all pretty challenging! I'm glad this site is here so that we can know we're not on our own.

13

Hi Ang, I had the lumbar puncture done, and opening pressure was in the 'high' range. Over 2 times normal reading. I suspect it was probably higher this spring. They do a lab with the collected spinal fluid to check for other stuff, but I doubt I have anything there that will come back. I just had it done a few hours ago, and it wasn't painful...just like one fireant bite and a little pressure in the spine for a short time that I didn't like, but I could stand it for a long time, not painful...just not a nice feeling. I got a nice headache afterward, which is pretty standard for patients.

Mine was done laying on my stomach and they used xray to look where to put the needle, so that was more techy than I expected.

I had a neuro opthamologist check my eyes for papilledema a week or two ago, and I was negative for that. That is usually the least intrusive way they tell if you have high intracranial pressure, but in some cases it won't show it like a lumbar puncture will.

I haven't heard from docs yet...just relaying what I gathered from what I was told today.

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Hi Tee, I'm glad you had the test done- and that it wasn't terribly painful. VERY interesting that more than one ES patient now reports high intra-cranial pressure. I suspect I do as well, although I haven't looked into having it tested. Its certainly another point in the argument for undergoing surgery for ES. I'm not sure how I'd do with the test you described. I find that I can't lay on my stomach anymore without feeling like my head will explode. Twice I've tried it and gotten nose bleeds. Bending over gets me, too.

Was there any pre-test discussion on how high ICP would affect a decision about surgery? Have you heard from your doctor since this test?

I'm wondering if high ICP puts patients at an increase risk for surgery complications? I think I'll ask my doc about that before I go ahead.

Thanks for being in touch- I'm interested to hear what your doc has to say about all of this!

Take care!

15

I BET you have it, then....and I'd put a few bucks on Todd having it, too.

Before my recent improvements, I couldn't lay on my stomach due to that pressure--I'd hear the blood in my head, get pressure in my face and eyes...all of it. I know you have the exact same thing! I get it a little bit now, but it is bad for a minute or two, then subsides and I can stay laying on my stomach after. I used to NOT be able to bend over...at all, either. I would squat to pick stuff up. You are where I was with that-- it was truly impossible because the pressure was way too much, right away. I hated that, and it scared me.

There are still places that do lumbars laying on your side; I was surprised I was on my stomach. I had no idea there was anything but the side way.

I also had a bloody nose--I knew it came with my head pressure. I also had (have) crazy red eye veins and the conjunctiva swells in a blister-like way when I have high pressure. Rarely, now.

The doc's office sked the lumbar just to be SURE that everything was adding up to my jugular problem being clinically relevant to my symptoms. I didn't talk to the doc about it...just the scheduler, so no discussion on a pressure supporting the decision for surgery. I suspected high ICP big time since spring. It's even noted in my doc's notes that I was 'concerned about intracranial pressure'. I remember reading about superior vena cava syndrome, and that it causes intracranial pressure. The two were perfect descriptions of my symptoms (except the superior vena cava seemed to be a minor version of the description. It mentioned prominent veins on the arms and chest, which mysteriously appeared with this whole mess- I believe these are the start of bigger collaterals that are trying to form. They are not even half as bad as they were...again my improvements were across the board).

I have to get the spinal tap labs back (they should be fine), and then hear from the doc. I think the plan is to hammer out an idea with my other docs. He works kind of closely with my neuro docs and my ES ENT. I am going to ask about my 3 suspects for causing this: my cervical spine and how it looks like it could be restricting my spinal canal.....the internal styloid process restricting the jugular......and the possible involvement of neck muscles smashing my vessels/thoracic outlet

I am not sure how increased intracranial pressure would affect surgery, other than maybe more bleeding, but they aren't cutting anything bigger than veins when they remove the styloids, either. I know that certain meds can increase blood pressure, which is something to avoid with high ICP, but I don't know what drugs used in surgery might affect that?

Sorry for the novel!

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Check out discussion entitled "live with it" Terry wickline had surgery with Dr. forrest in 2011. I don't know if she still reads this site and would reply. If you want more info about Dr. Forrest. Click on "all discussions" In the search box, enter " Dr. Forrest" and you can find the discussions in which his name pops up. This might give you some info that others have mentioned about Dr. Forrest. Hope this helps you

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Dear Tee,
I’ve been healing from a C-Spine fusion from C-3 to C-7. It was done from the front but I had 3 cadaver bones that replaced my vertebra! Had that done in June. That was part one! No Surgeon would consider fixing my ES with my neck in such bad shape. I personally think the neck surgery exacerbated the ES! I’m so miserable! I do feel like my head will explode sometimes! I’m still dealing with daily headaches that NEVER go away!! Shoulder muscle pain also constant. I’m in Michigan. Only a few Docs here who haven’t done ES surgery very much so I’m going out of State. Ohio is close! Interested in this Dr. Forest? Don’t know much about him? Will take Emma’s advice. Please keep me in the loop and let me know how things go with this Dr. Forest? Nice meeting you. So sorry under these circumstances!

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I agree that it's related. I had POTS before surgery and it would become most intense after driving (with sharp head turns, which I'm sure caused the styloids to stab my jugular). When I had external surgery, it was found that the styloids were pinning my jugular to my spine.

Post surgery, I haven't had a single episode of POTS. I hope you have the same experience.



Ang said:

Kitty- I have POTS, which my doctor also referred to as orthostatic imbalance. I have episodes of low blood pressure that can be caused by changing positions. I often feel off balance when this happens- almost like I'm going to black out. I usually get very strong pressure in the back of my head when I stand up, followed by a racing heart and general weakness. When I took the tilt-table test, I discovered this was my blood pressure dropping. Incidentally, my stomach also reacts to these changes, (I get esophageal spasms) making me wonder if this is due to vagus nerve compression.

I have also had a LOT of pressure in my head, at times affecting my vision. I feel and hear my pulse in my ear strongly- pretty much every night. As well, I get a lot of pressure in my neck if I bend over or exert.

I suspect this is all related to ES. I tend to have an almost electrical-feeling ache in my neck when my symptoms hit. I haven't yet found a doctor who seems to want to understand all of this as it relates to ES, other than an internist- who wouldn't be able to do anything to help me.

Hope this answers your question!

19

Ang,

Hi, I am considering going to see Dr Forrest as well. Like you, it would be a trip! I have seen other Dr's and they are not feeling comfortable with the stylodectomy despite what is shown on 3D CT and CTA. I have had Botox in the neck and head with no help. When is your surgery scheduled for? I have read the responses, I also have dysautonomia and those symptoms as well. Dizzy, no balance, light headed, such pressure in my head, pain, etc. If you have had surgery by now, how are you doing?

Best,

Eaglerosie (Sharon)

20

I did a little research for you. I noticed that Terry Wickline had surgery wtih Dr. Forrest in 2011 around April or May. Terry reported very good results, but I do not see any further comments from this member in the long term. I just tried to friend Terry and noted that some of us are interested in the results. Of course, if Terry is no longer checking this website, we may not know. I hope we get a response for all of you.

Just a reminder to all members, this is one good reason that we should all stay connected for a decent length of time say a year or two, at least after surgery. We are all so desperately looking for options and it is difficult to assess if the surgery is successful, if the only comments we get are very early on in the recovery. Sometimes, the early phase of the recovery is not significant because damaged nerves can ultimately heal or sometimes being pain free might mean that a nerve is numb and when it awakes the pain comes back. So if you have surgery, please help the rest of us by hanging in with us for awhile in the future.

I also just messaged AmyBlue who had surgery with Dr. Forrest in August. She was happy after surgery. I am hoping she is still checking out the site. I asked her to comment for us.